Connect with dd (David)
 Email: daviddenborough@dulwichcentre.com.au

Power to Our Journeys
Learn more about the Power to Our Journeys group 
 https://dulwichcentre.com.au/wp-content/uploads/2021/12/Power-to-Our-Journeys-by-Brigitte-Sue-Mim-and-Veronika-1.pdf

Explore the Dulwich Centre
The home of narrative therapy + so many great resources
 www.dulwichcentre.com.au

Free course: What is narrative practice?
Curious about narrative therapy? Take a look at this free introduction course:
 https://dulwichcentre.com.au/courses/what-is-narrative-practice-a-free-course/

“Sneaky Poo” + understanding tricky thoughts
Looking at externalisation 
 https://dulwichcentre.com.au/in-our-own-wayshttps://dulwichcentre.com.au/beating-sneaky-poo-2.pdf

Stories from around the world
Including the CARE Counsellors of Malawi + the “Bundle of Sticks”
 https://dulwichcentre.com.au/in-our-own-ways

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

 Incredible artwork @sharleencu_art

 Shout out to Amplify for welcoming us into their recording studio

EPISODE TRANSCRIPT – Power To Our Journeys

[00:00:00] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:13] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:31] David: Sometimes when I’m in stressful situations and the voices are playing up, having the sticks next to me is really significant. They make me think of the people of Malawi overcoming enormous obstacles in their battles with HIV aids and they give me courage to keep going.

They remind me that when you’re up against something very big, then it’s important to take things just one step at a time. They reconnect me to the importance of every little thing, how every small stick is important, because it’s together we are strong.

[00:01:10] Lucy: I’m Lucy

[00:01:10] Rachel: And I’m Rachel and we’re the hosts of the Extremely Human podcast.

[00:01:14] Lucy: Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria, or moments that feel completely unreal.

[00:01:26] Rachel: On Extremely Human, we hear from people who’ve been there and share what they’ve learnt along the way. Together we ask, how can we meet the full range of human experience with kindness and compassion?

What is narrative therapy and how did it begin? We’re joined by David Denborough, who shares the history of narrative practices, the difference they can make in people’s lives and the story of a beautiful group called Power to Our Journeys.

[00:02:06] Lucy: Today we are still in Adelaide. We’re doing a few episodes in Adelaide and today we are joined by David: Denborough, who is actually Paul Denborough’s brother, who we had on an earlier episode. This is the episode  is: Is this really radical? Check it out if you haven’t. We now have his wonderful brother, David Denborough, also known as dd. Welcome and thank you for joining us.

[00:02:28] David: It’s very nice to be here. I enjoyed the episode with Paul very much when it came out some time ago, and I’m very glad you’re here in Adelaide. So what a treat to be able to chat with you both.

[00:02:38] Rachel: We usually start with a pretty standard open question. Can you tell us about something ordinary recently that you found beautiful?

[00:02:46] David: Well, I can, because I’ve heard that question asked of others and it’s a beautiful question. So I was thinking about this and when I was thinking about it, I happened to be actually doing it. So it’s a little bit quirky, but sort of started in Covid. I would take a cricket ball and just go by myself to the cricket nets. I don’t know what you know about cricket, but most people, when they practice, they do with other people. And it’s quite unusual to see someone running in particular if they’re a bit grown up, running in and bowling a ball to no one at the other end of the net.

But believe it or not, this is something I find quite beautiful because it’s exercise. It’s quite meditative in between the exertion, you get to just look up at the tops of the trees. And then when it’s not so cool, the oval is quite near the ocean. So if I’ve got all hot and I can just wander down to the ocean and plunge into the chilly but refreshing waters and I will not be the same afterwards as I was beforehand.

[00:03:48] Lucy: So do you do a bit of solo bowling and then a dip in the ocean? Do you combine the two?

[00:03:53] David: I do if it’s. If it’s hot enough.

[00:03:55] Lucy: That’s amazing. That’s brilliant

[00:03:56] Rachel: So before we launch into what we’re here to talk with you about today, David, how about you tell us about yourself a little bit about who you are and certainly.

[00:04:05] David: Sure. I’ve listened to other episodes of your podcast and people are profound, generous in relation to sharing their experiences of life. One of the many things I treasure about your podcast.

So, yeah, well, you know, I’m a brother, so I’m a brother to Paul, but also to two sisters, Kate and Liz, all of whom live in Naarm in Melbourne. So I moved to Adelaide because of the ideas, because of narrative ideas and the community here. We’d grown up actually in Melbourne, and I should say because people who know Paul might be listening. Paul was going to be an AFL star and he was great at AFL, but he had to move to Canberra because of my asthma and my dad’s asthma. Anyway, slight diversion.

So I moved because I was searching for ways of making sense of this crazy world. And so I was searching for any hopeful approaches about different ways of being men, reducing men’s violence against women and children. And Dulwich Centre, where I work now, had produced a newsletter about men’s ways of being.

And it was men and women working together in gender partnership.

These days, it’d be people of many genders working together in relation to these issues. Anyway, I’d been working in prisons and also in schools trying to prevent men’s violence and searching for these ideas. And the most xciting ideas that I came across anywhere in English speaking literature, because I was really searching, were from Adelaide and I was a real snob from the eastern states. You’ve probably, you know, moved past these dominant ideas from the eastern states. I didn’t know there was a such thing as eastern state dominance. But once you get to Adelaide, you realise, actually…

[00:05:56] Rachel:  Is there something about the context of central southern Australia as opposed to eastern states that you think allowed for Dulwich Centre to emerge? Or the, you know, is there something specific about the culture or the difference of not being an eastern state?

[00:06:14] David: That’s a good question.

I’m not sure I’m the best person to answer it, but there are a lot of very generative things do happen in Adelaide and certainly I think anywhere that’s not the mainstream is where I think the most exciting ideas are. And that would be a narrative therapy ethos also. So, I don’t know, some people would say so, some people would say it’s a place where different meridians even cross. There’s a place south of Adelaide that’s a very significant place, if you believe in those realms.

Beautiful place. But I think also it’s been partnerships that have taken place here that have really made the difference and they can happen anywhere. But it’s been long term partnerships, both with folks experienced extreme states that we’ll talk about earlier, and partnerships with children and families, but then also partnerships with First Nations Australians Aunty Barb Wingard and Tim Agius and others.

But I like your question. There is something certainly local and local relationships that have made things possible here that I’m drawn to.

[00:07:30] Lucy: Narrative therapy. A lot of people don’t know what it is. Rachel and I share the same enthusiasm that you have for narrative therapy, but for people who don’t know what it’s about. Can you just tell us a little bit about narrative therapy?

[00:07:44] David: Well, I know I’m the guest and I should be answering that question, but I do have a sense, having listened to your podcast, including the recent episode with Hayley where you were actually talking about stories, power and reclaiming identity, that the two of you actually have a pretty, yes, strong sense or some ideas. First, I was wondering if I could turn that question back. I will answer, but can I ask you first, perhaps either of you, about what’s of interest to you or your connection to narrative practice and this podcast, before I jump in.

[00:08:18] Lucy: It is interesting because I’ve had to describe the training I’ve done to people and it’s hard to summarize because there’s not Much that I can compare it to, but I like the idea.

I think someone wrote the book Telling stories that make us in ways that empower us or make us stronger.

[00:08:34] David: Telling our stories in ways that make us stronger.

[00:08:36] Lucy: Yes.

[00:08:36] David: The book by Aunty Barb, who I just mentioned, and Jane Lester.

[00:08:39] Lucy: Yeah. And that, to me, like, summarises it. Like, we tell ourselves stories all the time, but why wouldn’t we choose the ones that empower us, make us be better humans in this world? And I think when I did the training, it’s just such a. It’s so respectful and compassionate. And I was saying to Rach before, like, there was lots that was happening in working in mental health systems that was really disheartening. And hearing about narrative therapy has made me feel really hopeful about working in that space again. So, yeah, I’m super excited by it. I know very little, though.

[00:09:16] David: I recognize your description. So. Yeah, yeah, yeah, it’s nice to hear.

[00:09:21] Rachel: Mm. Yeah. I think, you know, language shapes reality and how we.

How we speak about things defines our experience. And that could be good, and that can not be good. And so, you know, using storytelling to redefine and retell and reshape realities can mean that we can find ourselves out of situations and emerge differently in a way that I think is healing and identity reforming.

So that’s how I think about it. And, you know, I’m just looking at the book here in front of us called Language Matters, and it, you know, it all kind of talks about how we. How we speak about things and when we speak about things and who hears those words helps shape our experiences or reshape our experiences in the world.

[00:10:16] David: Well, it’s nice of me not to have to go first.

I appreciate your descriptions and I don’t know, in terms of narrative therapy, and usually I say narrative therapy and community work or even narrative practice, because it did emerge from family therapy and working in the therapy realms, but much, much broader than that now. And maybe I’d also say that even back before it had a name, because the name only came about in, like, 1990, but the ways of working had been in formation quite a bit of time before that and really emerged, I think, from social movements, not absolutely directly, but, you know, before my time in the late 1960s, both the protest movement trying to question Australian involvement and American involvement in the Vietnam War was trying to change Australia.

And then the women’s liberation movement and issues of gender was changing Australia.

And some of the key people involved in the development of narrative therapy here in Adelaide, Michael White And Cheryl White, and then later their collaboration with David Epston from New Zealand.

They were part of these social movements.

They came to look at the mental health system and the degradations of that system in the 70s and 80s and the disrespect and only professionals being able to define and determine the future of people who came from often working class backgrounds like Michael White came from. And Cheryl White was from the country and obviously joined with others. But they wanted to take on the mental health system. I mean, that was why narrative therapy exists. It was to.

One of the things was they decided early on, obviously critique was going to be crucial.

And in the early days you couldn’t talk about one’s personal experience because as soon as you did, your critique was completely disqualified. And what’s wonderful about your podcast and discovery college, and that’s not true anymore.

[00:12:27] Lucy: Yeah.

[00:12:29] David: So critique was going to be crucial, but what they also thought is actually alternative practices were going to need to be credited. You’re going to have to show them actually you can do other things other than disrespectful, top down, coercive, professionalized responses. There are other possibilities. So they determined to join with others and just search and create an experiment. And it was a time when experimenting happened less now. There wasn’t evidence based, you must do it this way. It was like no one knows what they’re doing, so let’s create something.

And they’d have Friday afternoon discussions and people would share hopeful work and then they’d start a publishing house because no one would publish this different way of working anyway. That part of what is. When you say what is narrative therapy? That’s part of it. It’s a history of people being determined to contribute to different ways of responding to social harm and people in distress. So that’s one of the things that I think is good to know about what is narrative therapy?

[00:13:33] Lucy: Yeah, it’s good to understand the history. Could we maybe say a little bit about how narrative therapy is helpful for people who are in extreme states?

[00:13:42] David: Well, I reckon I’m not necessarily the best person to answer that question, but I can talk a bit about how actually people who have experienced extreme states have made contributions to the development of narrative therapy from the beginning and their embracing of certain ideas and collaborating particularly with Michael White. Well, narrative therapy wouldn’t exist without their contributions in many ways. So there were two groups that narrative therapy sort of started with. One was with children and there was creative ways of responding to kids experiencing debilitating fears or having really tough experiences of life. And that’s partly where externalizing conversations came from and creative ways of kids drawing their fears and then educating them, putting them in boxes and creating the Fear Busting and Monster Taming association of Australia and New Zealand. Anyway, all these creative different ways happened. But the other group was people who’d spent a lot of time within psychiatry then were seeing Michael White often, like they tried everything else. And people would say, you may as well go and see Michael White. Like those folks who’d had real strife and other approaches hadn’t fitted. And together they explored what would sustain them in addressing what they were going through. Some of the externalizing was helpful, but so were like the documents. And I’ve got a little thing written by one of the early folks talking about what these documents meant. So maybe I’ll just say a tiny bit about documents in narrative therapy and then say how some of the folks in extreme states found them helpful. Would that work?

[00:15:17] Lucy: Sbsolutely.

[00:15:19] David: So There were like three breakthroughs in the. This is in the 1980s, even before it was known as narrative therapy. One was externalizing the person’s not the problem. The problem is the problem. Assisting people like you do to honor people’s own ways of naming problems. It’s up to the person themselves to name their experience in their own words and terms. So that was one sort of breakthrough, because that was a bit unheard of early on. There was another breakthrough that was about grief, actually. And again, back in the 1980s, the prevailing idea was that if someone was really, really struggling with grief, that they needed assistance to further let go, to further say goodbye to those folks.

It was a pervasive, normative idea within psychotherapies. When Michael was meeting with people who were really struggling with prolonged grief, he realized they tried so hard to say goodbye for so long, and actually it was making it worse sometimes.

And so there was a paper called Saying hello Again. Saying hello Again, Conversations. And what became Remembering Conversations was a real breakthrough. And the third was something that I’ve also heard you talk about on the podcast was about different sorts of documentation that rather than these files created by other people’s versions of your life, usually every negative, the worst things that have happened in your entire life being recorded forever in a way you had no control over.

Still pervasive now, isn’t it? Which, tragically

[00:16:51] Rachel: I think there’s an increasing respect of the authorship, like, you know, trying to make sure we do that in the most respectful way, but we’re still authoring people’s lives.

[00:17:02] David: So back in the 80s, Michael wouldn’t read people’s files. He would say, that’s not how he would get to know the person, but he would occasionally weigh them because they would weigh so much. He would use it as a way of honoring the strength that the person must have been having to be able to endure this weight of file.

And then they would create a counter document which was in that person’s own words and was about what they care about in life and what had helped them to endure whatever it was that was going on. And then this would get slipped into the existing file. So at least there’d be one honoring document. And for people in extreme states, although that language wouldn’t have been used a wonderful language, but sometimes these documents were very, very precious because when they were being faced with a tumultuous time, they would be able to turn to these documents and reread their version of life and their authority. I’ve brought various examples I can share later. But that’s just one of the things that folks in extreme states did say from the earliest of times, that being able to represent their own lives, what they care about, what they wanted to be able to remember when other forces might try and disavow them of them and to carry them literally with them and have other audiences know this about their lives. And that’s just. Yeah, one. One realm.

[00:18:36] Lucy: I really like how you’ve flipped the question on its head. Rather than what can narrative therapy do for people in extreme states? It’s. They did so much to build that practice.

[00:18:48] David: They really did.

[00:18:49] Lucy: And that’s pretty unique and special.

[00:18:53] David: I would agree with you. And it’s an acknowledgement and isn’t always made. But narrative therapy wouldn’t exist without the children’s contributions. There’s a book I did bring. I said, bit strange to do show and tell on the podcast. So it’s tell and tell. But I brought a book that’s called.

It’s my favorite book in narrative practice. It’s by Cheryl White, and it’s called a memory book. For the field of narrative practice, there’s one chapter that’s on children’s contributions. So those children who are living with terrible fears, they made profound contributions to externalizing practice that otherwise narrative ideas wouldn’t exist.

[00:19:29] Rachel: I wonder if you can say something more about externalizing or the externalization process and because I wonder what our listeners might be thinking or what that means or how that supports people’s process.

[00:19:43] David: Well, it’s one of a number of sort of cornerstones of narrative practice. It’s a politics and an ethics as well as a practice. And it’s really trying to assist people to find their own names for whatever it is that’s knocking them off their perch, and then to, once their own naming has been found, to start looking at, you know, the times when whatever it is is causing the most difficulty. What’s it doing unpacking the influence of these problems, but at the same time elevating the skill and insider knowledge of the person. And it can be externalizing many different sorts of things. There was a document I came across on expectations. That was what the externalizing was. I realized that actually it was other people’s expectations of what a good life would look like that would constantly be tripping up this person. So thinking about, okay, well, let’s really talk about expectations and how they work in your life, and what are the different ways of resisting these and what are the times when they’re less powerful and what’s going on there? Externalizing is a way of both naming, but creating these pathways to different storylines. What’s your experience in relation to externalizing

[00:20:58] Rachel: while you’ve been talking? I just had this sudden memory of watching a video many, many years ago of Michael White in a meeting with a family where he was talking about the child’s toileting problems, and they started to talk about Mr. Sneaky Poo. And it was, you know, this was a problem that was not speakable before for this family and for this young boy. And it. It became playful.

It became something they could all talk about in a way that. That was very freeing. And it allowed the young boy to start to bring his own expertise about the problem into the situation. And for me, as a practitioner, that was pretty life altering, really. Like, it really shifted my ideas or was the start of shifting some ideas. And I think the other thing that this practice has brought is collectivity. You know, it sort of creates these movements of people who join together to share their expertise and their knowledge. And that’s really beautiful about it, too. It’s about bringing people together and creating.

Creating movements.

[00:22:10] David: Could not agree with you more and say, with the kids, again, I mentioned, and a kid who was experiencing himself as fearful and scared to go to school, having nightmares once he had a chance to talk about what the fears, how the fears were affecting his life, it wasn’t him as the fearful boy. It was these fears. And once he drew them.

And Michael White could also say, wow, well, they look absolutely terrifying. I’m not surprised they’re keeping you awake at night. Do you think they’re keeping other people awake? What about the neighbors? And so then they investigate whether the names anyway. And then once it’s in the realm of the person’s own naming, then as you say they can, there’s a chance to come up with their own ideas about how to address this. So this little kid had ideas and it was to educate the fierce. He thought that’s what they needed and put them in a box. He said it would be cruel to keep them in the box all the time, just overnight. So he’d let them out again in the morning.

And why I’m telling this story is it links to the collectivity. Because then he started going back into his school and asking, are there any other kids who would any of you also having trouble with the fears? Yeah, and of course, yeah, these are difficulties of life that other people experience also. And then he would say, don’t worry if you draw your fears and you give them to me, I’ll take them home, I’ll put them in my box, I’ll educate them and I’ll bring them back the next morning.

And he became, yes, the president of the Fear Busting and Monster Taming Association. So these collectives, these collectives can form and whether that’s children or whether it’s people experiencing extreme states or what back in the early 90s was, you know, folks wanting to meet who were hearing hostile voices of schizophrenia and trying to come together too, share ways of dealing with this. The term schizophrenia wasn’t resonant, it wasn’t the naming that most of the folks wanted to describe their experiences, but to have a place, a non shaming place to actually talk about what on earth they were experiencing and trying to find language for things that are extremely difficult to find language for. And that’s, yeah, that’s all part of this realm of externalizing.

[00:24:26] Rachel: Do you think that the Hearing Voices movement is a narrative practice?

[00:24:31] David: Well, I wouldn’t say it’s a narrative practice because it has its own history. But I think it’s absolutely fan-bloody-tastic. And those histories overlap because yeah, Hearing Voices movement as you know, when it started in the late 80s at the same time Michael was meeting with folks hearing voices here. When the first Hearing Voices group that I know of in Australia started in the early 90s, the Power to Our Journeys group, there was, you know, correspondence with the hearing Voices movements, folks. And I think the hearing Voices movement is a. Yeah, just a most wonderful movement. I don’t think it’s up to me to say if it’s a narrative movement because they may well not say so. But I would say that narrative practitioners and the field of narrative practice just cheers, cheers on the Hearing Voices, movement. Gusto.

[00:25:20] Lucy: Many people might not know who Michael White is. He obviously did a lot of wonderful and unique work, but it almost sounds like he’s created his own discipline. Like what did he identify as a therapist or.

[00:25:33] David: So narrative therapy really came in the therapy room, really came about through a friendship between two people. So it was Michael White and David Epston in New Zealand. They were social workers by training and it was very unusual, and to this day is very unusual, that a field within the mental health realm was created by social workers, not psychologists, psychiatrists. But from the beginning they were very clear that this was being co created with the families and the people they were meeting with. David Epson was also an anthropologist before he was a social worker. So in an anthropological, particularly when anthropology was challenged very much by indigenous peoples to say why don’t you stop studying us and instead study yourselves to work out why you’re so interested in studying us. That political turn in anthropology and then Cheryl White and also Ann Epston and other feminist practitioners were absolutely crucial in trying to say what could be a way of working that wasn’t mother blaming, like externalizing can also be seen as a history of feminist influence. To be able to name what problems are in families that aren’t. Every single problem was being blamed on others.

So yes, it is unusual to create a field, it was a collective effort, but it did come from Australia and New Zealand, which was also very unusual because every other dominant psychological understanding had come from the northern hemisphere. And there was a time in family therapy when folks decided, well, let’s stop having keynote speakers from the Northern hemisphere. Let’s try and work out what’s a way of working that could fit here. More recently, First Nation’s influence has also been really, really crucial. So yeah, so Michael White, but he was also, you know, he’s from a working class neighborhood in Adelaide, never got another degree, believed that universities were gatekeepers of knowledge and who would want to turn to universities for further know how that the knowledge would come from the margins. He’s no longer alive.

David Epston’s still teaching things online from New Zealand and they had this great collaboration where they’d be able to share their, you know, not just things that were going well, but things that weren’t going well and they’d be able to share and look at each other’s work. And David Epston would say, I don’t think you were doing that last time. What’s changed and just to generate new ideas, they didn’t want to give it a name. So I thought then it would potentially some people think now narrative therapy is this, but actually it’s a field that has always changed and is always changing.

[00:28:16] Rachel: So, you know, on Extremely Human, we often talk about compassionate and human-centred ways of responding to distress.

In a previous conversation with us, you were telling us about the Power to Our Journeys group and how that feels like a beautiful example of this.

Would you mind telling us a bit more about that group and how it works and how it came about?

[00:28:37] David: Far from minding, I’d be very happy to tell you. And I appreciate the chance to speak about some of these histories because actually I think there’s so much for me to still learn from them and I’m interested in putting together, putting them more out in the world in some way. And this conversation with you can be part of that. If anyone’s listening would like to know more or participate in further discussions about these, it would be great. So Power to Our Journeys I have a little quote here which is from the Power of Our Journeys group. Power to Our Journeys is a support group for people who struggle through their lives hearing voices.

It’s an empowering group, enabling our stories and our insider knowledges to be heard and recognized. We’ve developed close and respectful friendships that help us through hard times. Each step we take together is about our survival, but these also have to do with justice because there is so much injustice around issues in the mental health field that needs to be addressed. We also pick daisies, fly kites, eat chocolates and sponsor dolphins.

[00:29:39] Lucy: So wholesome,

[00:29:42] David: so thought best to have them describe them in their own words. And there are a number of articles and documents that we can put links in the show notes to. And the reason why I’m very happy to speak about them is that they were, apart from being, as far as I know, the first group for folks hearing voices in Australia, which I think is significant in itself. They were just fan-bloody-tastic and I don’t think to this day I’ve ever experienced conversations with their degree of kindness and care of each other, knowing that the slightest cruelty or judgment could be fuel to patriarchal and hostile voices that were sometimes tormenting the group members. But I also am excited to share a talk about it because it was there were like three things that were going on at once. And I first came to Dulwich Centre, I think in 1993, I learned about the narrative therapy, what was happening in the therapy Room and loved it. Stayed up all night taking notes while other people in the youth refuge were snoring. Anyway, what was actually happening in counseling and therapy, I loved it. I was also introduced to the community projects, and they. I loved them just as much.

And one of them was what was called the Alternative Community Mental Health Project. It was small, it was modest. Everything, like, conveyed my excitement. But at the same time, Dulwich Centre is just a small place. And so none of these were grand. This was a small group of people who wanted to try and think, what could an alternative collective response be for folks who had mostly recently come out of psychiatric hospitals or had had a lot of time in and out of psychiatric hospitals. And so there was this group of community members and they needed to try and employ some people. Didn’t have any funds, so it’s completely unfunded. They sold T shirts to raise funds. The project members, the criteria was that they had had to have previously displayed a commitment to social justice. So these were who was going to be employed in the project. That was what was important. Not their professional degree, not there anything else to show a previous commitment.

And so Michael White would meet with some of the folks who had experience of extreme states in counseling. But it wasn’t enough. Just a conversation every so often wasn’t going to be enough when folks are also trying to create a new life in community. So they also brought people together in this group, the Power to Our Journeys group, where they could create collective documents that we’ll talk about a bit later, perhaps. And even that wasn’t enough. Having a group wasn’t quite enough because for the rest of the time, when you’re not in the group, you’re still trying to live life.

So these project members who had the commitment to social justice, they would, you know, visit folks and just go out for walks on the beach or have a cup of coffee or, you know, do everyday acts of living together, but be in company.

And it wasn’t just company because there was also this shared understanding that this was also a political project, that these folks had often been subjected to some pretty terrible experiences, that the voices that they. The hostile voices that they were experiencing were often quite abusive, patriarchal voices.

And so these steps that people were taking, this walk on the beach, yes, it was a walk on the beach, but actually it was also an achievement. It was also an achievement that we’re doing this. And it’s also. They’re going to talk about that next time in the group together. So it’s linked to the collective, and the collective will be celebrating that, but also getting ideas from each other. So they’re also contributing to each other’s lives.

And it was this interweaving between the therapy, the group and this community project. I just think it’s a really significant story to be known. Not that it was, you know, solved all problems. There were struggles, but I think it was marvelous. And that’s one of the projects that I first learned about when I first came. And it was also, you know, there was a commitment that the police would never be called or, you know, that they had had to do things in ways that were going to be outside the systems. And that required 24 hour other options to be calling and all the sorts of things that you’re very well aware of in terms of alternative responses and some great initiatives now happening in different parts. But this was in the early 90s.

[00:34:23] Rachel: I have a question which may not make it into the cut, but you know, introducing alternative practices is challenging in a very strong dominant mainstream system. What was it like at the time in trying to introduce alternative practices into the community?

[00:34:45] David: Well, this was completely outside mainstream services. So that’s what made it a possibility. Also might be seen as a risk now or whatever. But Michael had been working within psychiatry.

And then at a time Cheryl said, you’re either going to have to choose to continue to be so frustrated or you’re going to have to choose to stay in relationship with me and come out and create something independent. So that’s why Dulwich Centre then formed outside mainstream mental health services. So difficult side is absolutely no funding. So everything had to be being generated to create this alternative response. But it wasn’t as if people had to be convinced for this alternative community project to happen right outside, which made it also possible. What was exciting about this project to me is that it was an independent small initiative trying to just imagine what a different sort of approach could look like. The other thing that was significant was the Power To Our Journeys group, as you were saying, was also about collective possibilities. They’d also create these collective documents which I think you had a had a peek at some of the collective documents.

[00:36:00] Lucy: I did get a chance to have a look at some of the documents about power to our journeys group. And it actually made me teary just reading the way they spoke about the group and like the word respect comes to mind for each other and the way Michael treated them as equal. And there was a playfulness about it as well. They’re trailblazers, really quite progressive for 1990s.

[00:36:24] David: They were, they were trailblazers and one member, sue, who’s no longer alive. Sue had been very active in the theatre, but she’d also been a feminist activist. And a number of the group had strong feminist politics. A number of the group were lesbian, and their politic also was really influential in its history. And so this is from Sue’s words. We all come to the project with different perspectives on the politics of analyzing and dealing with the hostile voices. But I think I can safely say that we have a common bond. We all find it really useful to say that we’re united together against the injustice of the Voices they’re particularly talking about. They’re obviously also positive voices and friendly voices, but they’re talking about the hostile voices here. For myself, I found it almost like a watershed, a revelation, to view the voices and deal with the voices as a political campaign.

This is just my personal view, which is informed by my past experience as a political activist. But I believe each one of us is a political activist in our own way, because we each stand up to the injustice of the voices. Used to say, she used to be a political activist out in the world. Now she’s a political activist in her own mind to try to counter the patriarchy of the Voices. For me, anyway, the bad voices are patriarchal. They oppress me. They want to keep my life limited. I feel like I run a political campaign against the injustice of the Voices on a day by day, hour by hour, minute by minute basis, with the goal being to get back my life or to have a life. I think that the political nature of the work is worth acknowledging.

So, yeah, there was the respect, there was the joy, there was the support of the dolphins and there was shared politics.

[00:38:09] Lucy: Yeah. Where do the dolphins come into it?

[00:38:12] David: There are dolphins in here, in Adelaide. I think at that time it’s possible to sponsor dolphins to try and then, you know, be caring about the life of these particular dolphins. Some environmental care going on, too. And I remember one of the other rituals that happened with the files, these terribly degrading files. One member had been through a workers compensation scenario and there’d be all these horrible files. So when it all got completed, they had a big ritual, huge file burning bonfire. I burnt my rehab file. It was a great thing to do. And then they planted all these other trees and had alternative environmental action. So there were all these rituals and there was this interweaving of personal support with collective action, as you mentioned before, is what I think was one other thing so significant about these realms.

[00:39:11] Rachel: Were there other reflections of people who were part of the project that you would share who you know, that sort of reflect what it meant to be part of the group.

[00:39:21] David: Well, this is someone saying, better what I said before, I think this is from another community member. The times we, meaning times they spent with the community support workers spend together are not just nice times.

They’re times of very well thought out work. Work that involves reclaiming our lives from the voices. Our times together often involve conversations that expose the tactics of the voices and highlight how we are resisting them. We also share times that physically challenge the voices. For example, the voices constantly demand that I don’t go outside, that I stay inside. To successfully do the opposite is therefore a powerful event.

Together we may go for a walk on the beach. It’s a walk on the beach in the knowledge that we’re acting in solidarity. It’s not just like two people getting together and going for a walk, Even though that’s what all the people looking on would see. It’s different because we have a joint analysis of the situation and of how our actions together are contributing to changing my relationship with the voices and with life.

The time shared together are like little treasures to hang hope onto and to build upon. There’s one other story. Can I tell one other story about what the collective made possible?

[00:40:29] Lucy: Please.

[00:40:30] David: What was quite powerful was when the Power To Our Journeys group made a contribution to other people having tough times, but in very different realms. And the most powerful example of this, and it was mutual, was that there was a group in Malawi, this is also in the 90s, who were trying to face the devastation of HIV AIDS. And they’d also learned about externalizing, but they had taken into more a collective theatre way of doing things. So they had a person play the role of aids. This was sort of in village meetings, and they would ask aides like, you know, why do you like Africa so much? Why have you come into our lives? What are your hopes? And they managed to talk about, you know, profoundly difficult things, but in a theatrical way. And then they’d have another character called Care, who’s representing community action. And the villagers would ask, how are you going to support us and what are you going to do? And this character would pass around a stick to the group, and she would say, you know, can you break this stick? And people would break it. And then she’d pass around a collection of sticks woven in twine and say, you know, a bundle of sticks and say, could you break this? They’d try to break it on their heads or on their Feet or do this. And they couldn’t. They couldn’t break it. And then they’d all speak in chichewa, the local language saying, oh, stick on its own is easily broken, but a bundle will not break.

And a little video was made of this that Michael then shared back with the Power To Our Journeys group. And the Power To Our Journeys group loved this, and they wanted to send gifts to Malawi. So that didn’t have many things to share, but they had a T shirt that said Power To Our Journeys, and it had a picture of Mount Kilimanjaro, which was their symbol because they said that getting your life back from hostile voices of schizophrenia was like, you needed to make all the preparations you need to make to climb a mountain. You need to have a team you need to make. So this metaphor was significant.

Anyway, they sent the T shirts and they sent the Power to Our Journeys song over to Malawi. And the people in Malawi were so touched about this that they sent the bundle of sticks. Oh, so. And I have this most beautiful quote about what the having the bundle of sticks back in Australia meant. So this is what sue said, because then whichever member of the group was struggling the most would be given this bundle of sticks. So this is what Sue said.

Sometimes when I’m in stressful situations and the voices are playing up, having the sticks next to me is really significant.

They make me think of the people of Malawi overcoming enormous obstacles in their battles with HIV aids. And they give me courage to keep going.

I get strength from them and they shrink things so that they become more manageable. They remind me that when you’re up against something very big, then it’s important to take things just one step at a time. They reconnect me to the importance of every little thing, how every small stick is important because it’s together we are strong.

For me, these sticks are a powerful survival tool to carry around in my backpack. They’re powerful for the spirit. When the voices are having a go at me, or life’s kind of getting tough, having these treasures is so tangible. I can put my hand on them and hold them or literally carry them around for a day in my backpack. When things get a bit scary, I can just open up the backpack and say, oh, there they are.

I’ve taken these steps, sticks and the sarong to many places where I’ve been full of fear, where I’ve known I could be overwhelmed with fear. I might be at a course or something. And when the voices are having a go at me, I open up my backpack, stick my hand in there and just grab the sticks or just look at them and they remind me that I am who I am.

That might not seem to make sense, but they give me courage and they remind me of my connection with people.

Doctors or workshop leaders or teachers or whoever it is I’m having to deal with at the time may not know anything about me. Just having the sticks is like a secret. It’s a secret connection to this group, Power To Our Journeys Group, the Community Mental Health Project, and the people in Malawi. It changes my perspective on things.

[00:44:45] Lucy: Absolutely love that.

[00:44:46] David: I just. I love it when these different groups of different experience, both profound hardships, are making contributions to each other. And I think we could be doing a lot more of that because they’ve

[00:44:57] Lucy: all people who can hear voices. They’ve united together against their voices, and over the other side of the world, they’ve united together against aids. And then they’ve both helped each other. You wouldn’t think voice hearers and people with, you know, could have that powerful contribution to each other’s lives, but that’s incredible.

[00:45:20] David: Just a sort of sorts of possible exchanges across different worlds, I think. Yeah, there’s lots more that can happen with that, I reckon.

[00:45:28] Rachel: Well, it’s been a really lovely conversation, dd. Thank you so much. And I realize we’re coming to the end now. Is there anything that you think might have been lost or you want to revisit and hope carries forward from the Power To Our Journeys project?

[00:45:44] David: Well, there are probably lots of different ones, but there is one quirky element that always I just feel is very touching that really isn’t talked about very much these days. So maybe I can mention that it was about it, about invisible friends. Actually, you know, while the things I was talking about before in the Power To Our Journeys group were people’s efforts to try to diminish the effects of the hostile voices. There’s, of course, people also experiences of beautiful, friendly voices. Quite early on, apparently Cheryl said to Michael, why don’t you ask people about their invisible friends, like in childhood? And I’ve brought in this little book just for this moment, in case I could talk about invisible friends. So maybe I’ll just read this. This is in Michael’s words, and it says, “well, in this culture, certain points, children get talked out of their relationship with invisible friends. This is considered developmentally appropriate. However, I do keep in mind that there are many cultures in which a person’s relationship with the equivalent of invisible friends is preserved and in which their ongoing contributions to the person’s life is acknowledged. In my with people who are harassed by the hostile voices of schizophrenia, I sometimes learn of a childhood relationship with an invisible friend.

I can then ask these people questions about what these invisible friends meant to them, about how these invisible friends contributed to their lives in ways that were sustaining, about the circumstances of the loss of this relationship and so on. I can also ask people about what they think it was that they brought to the invisible friend’s life and to speculate about what the separation meant to the invisible friend. Isn’t that lovely? We can then explore the possibilities for a reunion and talk about how such a reunion might be empowering to both parties. And then we can put together plans for the reunion. I’ve attended many such reunions and I found them to be very moving and warming occasions.”

So I don’t know, just when you asked about things that you know, they’re not. I don’t think I’ve heard about invisible friend reunions enough and what.

[00:47:44] Rachel: I’ve never heard of them.

[00:47:45] David: So what our world could be like if there were more of these.

[00:47:49] Lucy: This is the most creative practice. I just love it. It’s so gorgeous.

[00:47:54] David: It’s also just a non-normative possibilities for life, isn’t it? Which is best for all of us. And that’s again what folks who’ve lived through and survived extreme states, often another thing, have to offer the broader culture to challenge all the normative assumptions of culture and life and how that can make life a lot better for living for everybody.

[00:48:14] Lucy: I think that’s a beautiful way to end. But before we do completely finish the chat, we’ve got one final question. Can you tell us either a story or a time of an act of care, big or small, that’s really stayed with you.

[00:48:31] David: So I’ve got two. Is that all right? Can I?

Lucy: Please.

One relates to my older sister, so Liz, who has early onset dementia and lives in a supported care accommodation. And when I last went to visit, I was going on the day where the music therapist was going to be attending because my sister is very musical person and her musical identity carries forward in ways that other aspects of our identity are harder for her to carry forth. So she’s a pianist and piano teacher. And anyway, when I turned up to the place and was met at the door by Liz and also by Rebecca, one of the support workers there, and the act of care was that Rebecca initiated the singing of “I’m on top of the world looking down on creation”, which is a song that has a history in my family, the song that my dad used to Sing, you know, whenever we got to the top of even a small bump, let alone a hill.

And it’s just a song that represents care and love and kindness and Rebecca knew that and then Liz joined in that song. So I was met at the door with this song which was just the most beautiful act of care, both from Liz, but also led by Rebecca.

[00:49:55] Lucy: So amazing. The power of music, hey?

[00:49:59] David: Power of music and just regrading and everything beautiful about it. Yeah, I loved it. And the second act of care that I want to mention was your question because what a lovely act of care to finish your podcast on. Can you tell us about an act of care, big or small? And they just conveyed the congruence of all your ethic and politic that is this podcast and is the Discovery College. So yeah, I wanted to thank you for that.

[00:50:29] Lucy: Appreciate that it’s been so joyful speaking with you. I think you’ve reminded me when we’re working with people or if we find ourselves in an extreme state or distress ourselves like not. Not to forget play and creativity and the joys that can still be within that. It’s really inspired me again. So thank you so much for bringing that Anya joyful playful energy. What a treat.

[00:50:52] David: Thank you for the chance to talk about these histories and also the present and for playing the Power To Our Journey song. So I guess folks will hear that it’s got its joyful moments and its sad moments and sung by you, I believe. Well sung by a whole, whole crew I think if that’s the. I’ll make sure that’s the record the version that you send.

It’s a version where some of the Power To Our Journeys group are there and some of the members of the community mental health team and it’s a bit of a rough and ready version, but that’s the best types. Yeah, I think it evokes a bit of the. Bit of the ethos of it all too. So yeah, thanks. Thanks very much for the invitation and yes, if anyone wants to be in touch after they’ve waited through the long show notes, then I’ll put my email there. And I am keen and partly spurred on by your interest to make more available some of these histories and link them to the present. So I will hopefully be working on that and if anyone listening is interested in being involved in any way, please, yes, get in touch.

[00:51:55] Song: A journey of a thousand miles begins with one step.

We’re coming together now. We’re talking about respect.

It shouldn’t be too much to ask, to listen and to learn. To fill the libraries with strategies that work and there is power to our journeys, there is hope in this room, voices to be heard and stories to be told.  There is power to our journeys, there is hope in this room, voices to be heard and stories to be told.

What could this be that we planted here today?

What could this be that we’re watering so carefully?

Could they be friendships Something so sacred yet so simple could they be friendships to sail.

There is power to our journeys. There is hope in this room voices to be heard and stories to be told There is power to our journeys There is hope in this room Voice to be heard and so stories to be told as we tell our stories we remember friends on similar journeys we take their hands and join them in rage and join them in sorrow and join them in hopefulness .There is power to our journeys. There is hope in this room, voices to be heard and stories to be told There is power to our journeys. There is hope in this room, voices to be heard and stories to be told. Well, we’re trying to get it together but together we have it all we’re trying to get it together but together we have it all we’re silently boiling over we’re silently boiling over well, we’re silently boiling over well, we’re silently boiling over! There is power to our journeys, there is hope in this room, voices to be heard and stories to be told. There is power to our journeys, there is hope in this room, voices to be heard and stories to be told. There is power to our journeys.

[00:55:11] Rachel: discovery college acknowledges that the views shared in this podcast reflect personal experiences and are not a substitute for professional mental health advice. They do not represent the views of Alfred Health.

[00:55:23] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website: discovery.college.

Learn more about Ngangkari: https://www.npywc.org.au/what-we-do/ngangkari-traditional-healers/

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

 Incredible artwork @sharleencu_art

 Shout out to Amplify for welcoming us into their recording studio

EPISODE TRANSCRIPT – Healing through connection

[00:00:00] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:13] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Shibs: I saw a Ngangkari, which is an Aboriginal traditional healer. When you talk about healing, that is healing on steroids. These are things that aren’t utilized and knowing how much of an impact it’s had on my life, when you also are drawing on the strength of connection with your culture as well, there’s something really beautiful and magical that happens. And I hope to see a day where there’s a medium ground where we can come into those spaces and have access to both. Traditional healing has a place and it needs to be, you know, respected and really upheld in that space as well.

[00:01:11] Lucy: I’m Lucy.

[00:01:12] Rachel: And I’m Rachel and we’re the hosts of the Extremely Human podcast.

[00:01:16] Lucy: Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria, or moments that feel completely unreal.

[00:01:28] Rachel: On Extremely Human, we hear from people who’ve been there and share what they’ve learned along the way. Together, we ask, how can we meet the full range of human experience with kindness and compassion?

[00:01:41] Lucy: In this episode, we sit down with Shibs, a proud Wulgurukaba, Gunggandji Woman, Lived Experience worker, and passionate advocate for proactive changes for Aboriginal and Torres Strait Islander peoples accessing mental health services. With warmth and honesty, she shares her journey of navigating identity, living with chronic pain, and the healing that comes from reconnecting with culture and traditional practices.

[00:02:08] Rachel: Welcome, Shibs. Thank you to our Extremely Human podcast. We’re really great to have you here today.

[00:02:13] Shibs:  Yes, thank you. I feel really grateful to have this opportunity.

[00:02:17] Rachel: Would you mind starting off by telling us a little bit about yourself?

[00:02:20] Shibs:  So I’m Shibs. I’m a proud Wulgurukaba, Gunggandji woman from Far North Queensland. I have very strong kinship ties to Kalkadoon, Mitakoodi and Koa. My family is massive on my Aboriginal side, so feel like we cover the whole state of Queensland.

Rachel : Wow

[00:02:38] Lucy: We’re everywhere.

[00:02:40] Shibs:  Yeah. And what about myself? I am a music lover. I think it’s always been a really healing thing for me. So I have music synesthesia, so I feel like it’s always been an escape for me.

[00:02:52] Lucy: Wait, so did you say music? Synesthesia? Yeah. What is that?

[00:02:55] Rachel: Yeah, I haven’t heard of that.

[00:02:56] Shibs:  For me, it’s so. It can look very different for different people. So synesthesia can come in all shapes and forms, but for me specifically, when I hear music, it’s like I see color and textures, and it’s just like I feel it really intensely. So it’s quite often I’ll get like. Like, kind of tingles all through my body. Like, really intense songs. I think the people around me probably are impacted the most because when I find a song that hits the right brain tickles.

I will listen to it over and over again for the dopamine hit.

[00:03:28] Lucy: That’s so cool.

[00:03:29] Shibs:  Yeah, but I think it’s. It’s also.

It’s kind of the escape of, like, sometimes you need the music, sometimes you need the lyrics.

[00:03:37] Lucy: Yeah.

[00:03:37] Shibs:  I feel like it’s been such a gift to me, and I’m really. It’s such a beautiful space to sit in just to, like, absorb music and see it in a different light.

[00:03:46] Lucy: It’s like 4D.

[00:03:47] Shibs:  Yeah, it literally is. And sometimes it’s just like, blowing my mind. So I would wonder why I got so overwhelmed and I’d start crying. Listen. Listening to music or just like, it was like this immense amount of euphoria. And I thought that’s just how everyone experienced listening to music. Yeah.

[00:04:05] Lucy: Right. You got a special ability, though. Yeah.

[00:04:08] Shibs:  Feels like a superpower sometimes. Yeah.

[00:04:11] Rachel: Such a good example of how we all experience things so differently. We never know what the other’s experience is like.

[00:04:17] Shibs:  Yeah. And I guess it’s not things that you necessarily sit down and talk about either, so. Yeah. So that’s, I guess, an interesting fact about me. I have a menace of a dog, Kevin Bacon, who just keeps you on your toes.

[00:04:32] Lucy: Kevin Bacon. Wow. On the last episode, we had Basil the sheep. Yeah, they’re up. They’re both up there.

[00:04:42] Shibs:  Yes. I have him and he definitely keeps me and my husband on our toes. And. Yeah. Have an incredible husband who in March, I would have been married to for five years. Wow.

[00:04:54] Rachel: Congratulations.

[00:04:55] Shibs:  Yeah, so that’s. You know, I think it’s like they. They are both such a big part of my life. I am a lived experience worker, and I also work in the academia space utilizing my lived experience.

And I think that drives so much of my passion and has really shaped who I am as a person.

And I think that’s really contributed to. To my healing journey. I feel like now work is such a big part of my life. But I guess the beautiful thing about it is that so much of the work I do doesn’t actually feel like work. It just feels like these really big passion projects.

[00:05:29] Lucy: That’s ideal, isn’t it?

[00:05:30] Shibs:  Yes.

[00:05:31] Lucy: So good.

[00:05:32] Shibs:  Definitely doesn’t work like that all the time.

[00:05:34] Lucy: No,

[00:05:36] Shibs:  for the most part. For the most part.

[00:05:39] Lucy: Before we hear a little bit more about your work and your perspective and your lived experience, we have an opening question for everyone.

[00:05:48] Shibs:  Yes.

[00:05:48] Lucy: Which is, what’s something ordinary that’s felt beautiful to you recently?

[00:05:54] Shibs: Yeah. So I was driving to work the other day, and I have a really close relationship with my nephew. And so he’s 11 years old and he often calls us quite a lot when we’re on. When he’s on school holidays. And he called me and it was just like this really such an insignificant moment, but he was just like, you know, what are you doing today? And he’s like, oh, how’s work been? And what have you been up to the last, like, the last week? And I. I met him, you know, he was 10 minutes Earthside. So it was just like watching him just evolve as this person and develop his own conscious. But the empathy and just the curiosity he carries, and it’s like every time I speak to him, my heart just swells up. And it was just like this beautiful moment of him showing genuine interest in what I’m doing as a person. And just like, he’s seen some of the spaces I work in, so it was like he can picture what. Where I’m going to, and he’s actually really interested. And it’s like he kind of brags about it to his friends.

So it was just such a wholesome moment of just like, oh, my gosh, you’re really this human growing into, like, this pre teen, but there’s still this. This immense amount of curiosity and care and love and genuine interest. So you always worry when kids start to grow that they’re just like. Especially when you’re an auntie of like, oh, I don’t want to you. I know I’m too cool for you now. So it’s like we’re still in that phase. So I just like, like to really absorb those moments every single time.

[00:07:27] Rachel: Oh, my goodness, I love that story. You know, why don’t you, Lucy? I have a. I have a nephew as well. And that auntie relationship is such a beautiful one, you know, and watching the. The human that emerges, it’s beautiful. Thank you for sharing that with us.

[00:07:42] Shibs: Thank you.

All right.

[00:07:44] Rachel: Well, shall we jump in?

[00:07:45] Shibs: Absolutely. Let’s go for it. Head first.

[00:07:47] Rachel: Okay. I’m really curious if you could tell us a little bit about your own journey and the experience that you feel have shaped how you understand distress and healing.

[00:07:58] Shibs: Yeah. So it’s definitely been a chaotic journey for me. I grew up in a very small country town up in far North Queensland, and I’ve always struggled with my identity.

Being an Aboriginal person, it wasn’t something that was ever hidden from me or not talked about. It was definitely something that was always at the forefront. And growing up with my dad, he was a single dad to two, two daughters, my mum was very much absent in our life.

So I guess that was a core connection to our Aboriginality. And so I think growing up essentially in a white family, there was so much that I didn’t understand.

I couldn’t make sense of the town that I lived in. It did have quite a large Aboriginal community. And also being lighter skinned, I think it was the struggle of identity, being that the community around me were darker skinned. So it was like coming in at a get go. I always felt like I didn’t belong. And it was just like that feeling of being too black or to be white in kind of these white spaces, but then also feeling too white to be black in those spaces as well. So, you know, there was a lot of racism that was very normal and it was normalized. It was.

I don’t even think it’s like I really heard the word racism growing up. So when I would refer to myself talking about my aboriginality, because I did talk about, it wasn’t something that I completely denied, but it was, I would refer to myself as a half caste and that was just a normal term that we all used. And for me it was describing, I guess in my mind the narrative that I was told was that being black is bad.

So for me, kind of saying that I was half caste was very much kind of acknowledging that, yes, I have this part of me, but it’s not all of me. I also have this white side. And so I think there was very much in my mind this split between white and black. And I was kind of just in the middle, not knowing how to, how to make meaning and sense of that. There was a lot of shame, guilt, embarrassment.

And I think you just, you saw all this racism happening around you.

You saw these slurs being said. And so it was like then me becoming, it was like getting ahead of the comments that were going to be said to you. So it was like making jokes myself. And you know, I now recognize it as a lot of internalized racism that then became outwardly racist, which I think, you know, is something I still have to work through. But it was kind of that whole laughing about it. So I think growing up in that situation definitely shaped who I was as a kid. I think I was. I had a lot of very big emotions that weren’t necessarily acknowledged. I think growing up in my family setting, it felt like chaos in my head, but. But outwardly it was just like I was this happy, go lucky, really bubbly person that didn’t necessarily show the emotions that I was feeling because I felt like I couldn’t. But it was like my friends never saw me cry until I was pretty much like we were like teenagers going into adulthood. I think it was just having. When I would show emotions, they were just kind of shut down very quickly.

[00:11:23] Lucy: Your friends or your emotions?

[00:11:25] Shibs: I think my family mostly it was just like. I think there were.

I guess I kind of came into a really naive. Because you don’t know the environment you’re growing up in until you kind of get to an older age and you’re reflecting on those experiences. So for me it just felt like this normal childhood. And I think reflecting back now, it was a really dysfunctional family being that I had two older brothers and an older sister that I didn’t grow up with.

Also not growing up without my mother. I think that really was a significant part of my journey. Not having kind of that strong cultural connection which was kind of accessed through my mother. That was a big missing part for me as well. So it was just like having it. For me, it was like normal. Not having a mother and normal for me not having relationships with my siblings. And obviously growing up in a community where, you know, people had mothers and they had, you know, families that were together and parents that were together. All of those things really shaped who I was. I think there was a lot of really positive things, I guess having big emotions, a way of me releasing that was through creativity. So I used to write a lot of poetry. I played a lot of instruments. Singing for me has always been a really therapeutic thing. So leaning into those things kind of helped me manage the distress and that I. That I felt through most of that. And I think it wasn’t until I was moving into my teenage years and that was when I guess I started self harming and that was where I was starting to recognize or trying to find an escape to let these emotions out. Like I read some of the poetry I used to write and I was like, she was going through it.

She, she, you know, accurately describes how she was feeling. But I think it was just something that wasn’t spoken about. I think as I moved into adulthood, it was just realizing all of these things and coming to the realization, okay, some of these experiences weren’t normal. There were a lot of traumatic events that did happen in our family that I think that was where the whole shutting down emotions of not being able to feel those things as they happened. And I guess as an example of that, when I was, I think I was 13, my sister OD’d after a night out with friends. Kind of having that conversation and getting told that that had happened, it was just like I always felt I didn’t have a right to feel upset at those things happening. So it was just like, it was kind of like, okay, it happened, but we’re moving on now. We’re not, we’re not acknowledging it or kind of unpacking that. And I think it was all those little kind of micro traumas that just kept building up and not being able to acknowledge them. When I look at my adulthood moving into early adulthood, it was just realizing that, oh, yeah, not having a mother, like, not having my biological mother in my life actually really impacted me, you know, due to some physical violence that was happening. And you think when you’re 13, you know it all. No, you don’t.

You look back and you’re just like, what were you thinking? Yeah. And you just think, you know, everything.

[00:14:42] Lucy: Yeah. Yeah. I don’t even know if that ever ends.

[00:14:44] Shibs: Yeah. Do we?

No, I think, yeah. You look back in your 20s and you’re just like, you had no idea. Like.

[00:14:53] Rachel: But I guess we do underestimate how much 13 year old can know.

[00:14:56] Shibs: Yeah.

[00:14:57] Rachel: You know, like, they don’t really have their perspective. Heard often.

[00:15:01] Shibs: Yeah. I mean, I functioned for, well, I wouldn’t say maybe function, but, you know, I was out of home for six, three months. I saw a family counselor during that time. That was the only time that my mental health or my distress was ever acknowledged. Growing up, I think it was just not having the education or tools or knowing what the tools were. You didn’t go to hospital for, for being unwell, mentally. You went to the hospital if you’re physically sick or you had a broken bone. It was a small country town. There wasn’t accessible services. Kind of coming into adulthood and then realizing all of those things, I was just like, what is, what is going on?

[00:15:42] Lucy: Yeah. What is it like being older now and looking back on your childhood and how you grew up and sort of making a sense of that now because it sort of sounds like you didn’t have the resources at the time, but you may be looking back on it with a different lens and more knowledge of what maybe happened for you.

[00:16:03] Shibs: Yeah. There’s so much that I reflect on now and I think in a way, even though some of those times are some of, like the hardest moments of my life, I actually wouldn’t change a thing. I think every single experience has led me to where I am right now. And I’m so, so proud of the person I am now. Like, I think going on a healing journey isn’t. They don’t tell you that it’s messy and it’s chaotic and it is just. It’s not fun at all.

[00:16:36] Lucy: Yeah. It’s not glamorous.

[00:16:37] Shibs: No, it’s. It’s not all diamonds and glitter. And so I think looking back now, I wouldn’t change a thing that’s happened. I think it’s, you know, being able to be in the lived experience workforce and do the work that I do.

So much of my experiences, to know it’s. It was kind of like a full circle moment. Stepping into that space of my story has meaning. And it wasn’t all for nothing because I can walk alongside people and speak to those things or validate someone’s experience of, like, I’ve been there, I know what that’s like. But it gets better. Yeah. I moved up to Cairns once I had finished high school. It was kind of like gaining this independence back and kind of discovering who I was again. I had no idea.

And it was.

It wasn’t until I moved to Melbourne that I actually started acknowledging what was happening for me. And I actually started realizing, like, oh, there’s the supports available and there’s help available.

My life took a major drastic turn and I was experiencing significant pain in my legs that I had been since I was a child.

And I got diagnosed with Chronic Exertional Compartment Syndrome. That’s where, like, the muscle lining around your legs don’t expand enough. And so, like, it kind of like the pressure builds up in your legs. What ended up happening, because I kept going to doctors about it because I was like, it’s not normal for your legs to go numb after you walk and to feel like all these burning pains and just significant discomfort after walking. I’m like, this is not normal. I finally found my GP that I still see now who actually took me seriously. But by that point, the pressure got so high in my Legs that I ended up with hernias that came out and essentially they were hitting the nerves and the nerve that it hit went. Goes from your toes all the way up to your hips.

[00:18:34] Rachel: Wow.

[00:18:35] Shibs: So I think for me, I was at that point I was experiencing a lot of anxiety.

And I think one of the things they often teach you when you, when you go and see a psychologist is mindfulness and finding those moments. So for me, walking was how I managed my anxiety. And so I guess I was walking so much that that’s actually what kind of escalated my legs.

And then it was like kind of being told, you can’t do that anymore. Again, naive. I was just like, I need to fix this problem. Okay, you need to have surgery.

As terrifying as it was, I got a 10 grand loan out, had the surgery three weeks later, found out that it had failed because the surgeon hadn’t made the incisions in the right parts of my legs, hadn’t addressed the nerve issues.

After a very long journey of that and essentially being gaslit by the medical field, the surgeon essentially sending me to get nerve testing done and being told, oh, have you ever seen a psychologist? And I said, yes, I have. And he’s like, maybe you need to see a psychiatrist. You know, essentially saying that the pain I was experiencing was all in my head.

So that was, I think that was the first time the healthcare system showed me. I was coming in thinking, you come into these spaces with a problem, they’re there to help you, and that’s what they do. And it’s like, how didn’t they believe me? Why didn’t they believe me? Then I was diagnosed, eventually diagnosed with complex regional pain syndrome.

So essentially, your nervous system just goes into overdrive and you feel everything really intensely. So things like the wind, having a shower were extremely painful for me.

My partner getting into bed would send me absolutely bawling. I’d be crying my eyes out because I was in so much pain.

I thought at one point I was going to end up in a wheelchair, like having to use crutches to get everywhere.

So I thought I knew what kind of depression was and what anxiety was prior to that. And I felt like, you know, when you deal with chronic pain, that just rang a whole new level. You know, I thought I knew what feeling suicidal was like, but having to, you know, my partner having to hide my medication because I was just begging him to let me take it all because I was like, I. You just don’t want me to die because you don’t want to suffer. But I can’t see a lot at the end of this tunnel. I can’t. I can’t see how this suffering, you know, that’s kind of just being selfish on your part, not actually allowing space for me to just be like, I can’t actually do this anymore. And so I think that’s. That’s really where my healing journey started.

I saw a pain psychologist. The pain psychologist, I guess, really helped me put into perspective of, you know, your central nervous system. It was changing the language, how you viewed yourself, how you viewed what was actually happening to you, understanding the biology of what was physically happening in your body. And then I met my physio, who was just like, you know, simple things like breathing.

And it was just. That was when I started reframing what.

What my experiences were. So I wasn’t trying to get better. I wasn’t trying to recover. I was actually trying to heal. Rather than telling myself, I want this pain to stop. I can’t deal with this. It was.

I’m trying to calm my central nervous system down because right now it is running in overdrive and your body is in survival mode and you need to breathe through that. I eventually got into a place where my pain was under control. I was able to come off all my medications.

I was able to find a surgeon and have a second surgery done. You know, CRPS isn’t something that goes away. You essentially have it for life, but you can go into remission, which thankfully, I am now. Yeah, having a second surgery really gave a part of my life back. It’s not always perfect. I’ll still always have issues, but I think for overall, that was definitely like, kind of adding a physical element into it just completely changed the game for me. And, you know, that was without acknowledging my cultural identity at all.

[00:22:57] Lucy:  Shibs, you talked about how important it was in recovering from that physical pain and how that was sort of the beginning of your healing journey. At what point did you start to reflect or go into some of the things that had happened to you growing up?

[00:23:20] Shibs: What a great question.

I think there was a moment right before COVID hit, and it was kind of just like it was happening. I think everyone was just in a state of shock of like, what does our new life mean? What does this mean for us?

And I. It was the start of Reconciliation Week. And so that was before the Aboriginal flag was permanently up on the Westgate Bridge. And so I worked in Port Melbourne, so I had to drive over the bridge every day. And so the Aboriginal flag was flying and I was driving home from work and I’d seen the flag from our workplace and I tried to take a picture of it because one of my good friends, her partner was Aboriginal. And so I hadn’t really going through everything with my legs. I hadn’t really, like, acknowledged any of that kind of identity stuff. And so I was driving over the west gate and it was like the sun was setting and it was just. I have a picture and I have a timestamp of the moment my identity crisis hit.

And it was just of this flag of the Aboriginal flag flying, and it was like the sun was setting and it was like, you’re driving over this bridge. And I was just. It’s such a beautiful photo and it’s, like, tied to such a, like, weird, funny motion. But I’m also like, that’s. That’s now, like, something that I’m really proud of. And I went home and I went to. I sent the photo to my friend to give to her partner. I just looked at this photo and I. I sat there and cried for hours. And I was like, who am I? I don’t know who I am.

Like, I look at this flag and I know that’s a part of who I am, but I’m not proud of it. I want to be proud of it. Should I be proud of it? And obviously, you know, when you’re going through significant lockdowns and being taken away from the whole society you’re in, that was very much. Gave you time to think. And just to go back a little bit before that, a couple of months prior to that, I mentioned that I didn’t grow up with two of my older brothers. So my second eldest brother, I got a phone call to say that he had hung himself. I think no one, Nothing prepares you for that phone call. Nothing sets you up to be like, oh, yeah, cool. This is. This is happening. And at that point, when we received that phone call, we didn’t know if he was going to live. I’d been told at one point he’d passed away. And so it was just like all of these things come flooding in of, like, why didn’t I have a relationship with him? I never grew up with him. There was this massive amount of regret. And, like, you sit there and it just. Everything goes through your head in these. In these instant moments of, like, could I have done something different if I’d been a part of his life? Would that have made a difference? So when I was going over and I looked at that photo, I think that was also the Emotions that were coming up is that I almost lost a sibling. You know, thankfully he made it through. There was another attempt a couple of days after that as well. And looking at those things, it was just how, okay, what do I need to do? Because I think that was a big motivation of like, I’m now living in this cycle of all these little things happening in my life and I can now kind of fear, you know, learning, I guess about my physical health. It was learning how like little things like stress impact your body and you know, when you feel big emotions or you’re really upset, how much that actually impacts the physical aspect of how you’re coexisting in the world. And so, you know, recognizing that, it was just like, I actually need to do something. I can’t keep living in this cycle of my body, my central nervous system going into overdrive, living in this survival mode state. You know, what do I do to connect to my culture? I want to feel like, you know, will that bring me closer to my siblings? Will, you know, is will that have an impact on their well being? And you know, it’s.

I don’t want to live in a state where I’m feeling like I’m going to lose someone or every time I get a phone call, it’s something traumatic that’s happened.

Obviously Covid everything shut down. So it was like I was looking at, you know, where do I go to connect with my culture? And I was really lucky. The friend that I said that I sent the photo to, he, he was like, I think you should talk to my sister. When I spoke to her for the first time, we spoke for five hours on the phone, really.

And it was the first time I had ever felt validated, I’d ever felt heard, I’d ever actually realized that what I had experienced growing up and what I was feeling now was actually a re other people had felt that it was a normal experience.

Little did I know that that was then connecting it to like the intergenerational trauma and you know, that all flows on from colonization. So when I actually kind of had that realization, it was just like, holy, like what am I doing with my life? The government was releasing funding for cert fours and so I did a cert for mental health. I never went into it thinking, oh yeah, there’s a career out of this. Or I was like, I actually need to understand the chaos that is happening in my family.

I need to understand what’s happening to myself.

Maybe if I do this course, I will actually have a better way to Manage it. Knowing that, you know, when I was dealing with my physical health, how much, like, accessing services or supports and understanding that actually helped me reframe things for myself.

And so it was through the. Yeah. Doing the Cert 4, everything started clicking for me. And it was realizing that, oh. Oh, yeah, yeah, you, you are experiencing some deep intergenerational trauma. There’s a lot of trauma in your family. There’s a lot of dysfunction.

And finding out about lived experience, work. And I was just like, this. What? And I guess in some way it was like, you mean you can get paid for what you’ve been doing for free your whole life? Like, I kind of felt like at some points, I was very much the mediator when. When events and things would happen. That was another massive part of, like, you know what? There’s an actual role that you can play and you can share your story.

And then knowing. Reflecting back on the conversation I had with my friend’s sister. Yeah, it was like, I know how much that helped me. And that was the first point of, like, you can acknowledge your cultural identity. And so I wrote a cover letter and applied for a job.

And I was like, as a proud Aboriginal woman, and I put that on my cover letter. I was absolutely terrified.

But I realized also, going through the experience with my brother, that I.

I felt like I’d been. I’d gotten to a point where I was at least healed enough to give back, and I was in a position to give back. And so I was like, if I can come into the system and even just impact one person’s life, then this would all be. This wouldn’t be for nothing. And so it was coming in with the intent of, like, I actually genuinely want to build my own cultural identity, but I also want to help other people. Knowing now, recognizing that that’s actually a very common experience, that people often feel disconnected, that they often feel a lack of connection.

And so, yeah, I came in with the intent that I wanted to work with other Aboriginal and Torres Strait Islander people. I wanted to work with Mob, and I really wanted to hold that space.

[00:30:46] Lucy: Before you mentioned the. When you were driving across the bridge with the flag, and you weren’t proud of that identity, so. But then by the time you’d applied for the job, you were a proud Aboriginal woman. What changed? Like, how did you get from one place to the other?

[00:31:04] Shibs: I think it’s that whole, like, fake it till you make it.

You know, I was trying to embody what I wanted to be, and so I couldn’t say I necessarily wholly felt that in every cell of my body, as I do now. I think it was like, you know, telling yourself a narrative, and it’s like, no, that’s actually who I want to be. I really actually do want to work with mob. I want to stop seeing what’s happened to my family and my siblings and myself. I want to stop seeing that happen, and I feel like I’m in a position to actually do that. And. Yeah, so I think it was just, like, not necessarily that I wholly believed it, but I was like, you know, at some level, I am proud of this now because I. I also know that the experiences I’ve gone through have actually happened to a lot of other mob growing up. So I think that was the. The validation of in. That gave me a little bit of hope.

[00:32:00] Rachel: I keep hearing the word becoming.

[00:32:02] Shibs: Yeah.

[00:32:03] Rachel: You know, becoming a proud Aboriginal woman. Like, you know, maybe we’re always becoming who we are.

[00:32:09] Lucy: Yeah.

[00:32:10] Rachel: Like, maybe we’re never there.

[00:32:12] Shibs: Oh, 100. I don’t think you’re ever just, like, you know, that everything is ever evolving. Everything is changing and growing. Yeah. I look back three, even three, four years ago, and I’m just like, who was. Who was that person?

Like, I. I have a tattoo, like, of an Aboriginal flag and a love heart. And, you know, the. When I got that done two years ago, even that was like, a reflecting moment of, like, a couple of years ago, you wouldn’t have even thought that you’d have this on you. And now, like, the pride that you feel to, like, actually show that and, you know, not have any kind of embarrassment or guilt or anything, and to be like, this is. This is a part of who I am. This is my identity. Like, I am so proud to represent that flag.

[00:32:59] Lucy: You’re definitely not faking it anymore. When I saw your keynote on decolonising mental health, like, I was crying because I could just feel your passion.

[00:33:09] Shibs: Yeah. Like, I think it’s. I think it’s also the journey of. To get to that point of, like, it was not easy. It was. You know, I didn’t grow up around my culture. I was very much disconnected from it. I had this awakening moment of, like, you know, having a connection to my mum and not having that meant that I felt like I couldn’t have a connection to my culture.

So I think that was. That was something that I felt, but I just didn’t recognize. And so once I did recognize that, it was like, you can actually have a connection to your culture without having that connection, and you can rebuild that for what it is. And so down here, finding my community and really reconnecting through that. And I think it was through coming into my role at the hospital and connecting with other mob and then again being validated of like, we’re all experiencing this, we all experience imposter syndrome. Especially when you’re lighter skinned, like, you’re constantly feeling like you have to live up to this standard of like, I am an Aboriginal, I’m, I’m real. Like, you have society saying you need a confirmation of Aboriginality. You have people saying, oh, but you’re not black, or you’re this, you’re this fake black fellow because your skin isn’t dark enough, or you have to kind of work ten times harder to, to prove yourself that, you know, and it’s just like our culture is not our trauma. But yet this society tells you this, this story of like, you’ve brought it upon yourself. This is your own kind of fault. So that kind of all ties into it as well.

[00:34:37] Rachel: Shibs, I’ve just got to say, I’m just finding this conversation so incredible. So thank you so much for sharing your words with us.

I heard you speak before about decolonization and decolonising mental health services.

Can you say what that means to you?

[00:34:56] Shibs: I think working in the system now, having seen the impacts, having a really good understanding of intergenerational trauma, when you look at all of the systems that we work on, they’re very colonial, they’re very westernised. When I look at the system, I’m just like, there are so many harms happening to our people.

When you kind of open the door and you realize what’s actually happening, when you look at the statistics, when you look at the experiences, you know, when I reflect on the experiences I had, realizing that the amount of our community that are impacted by these things is, is significantly disproportionate to other communities. And so when you start looking at like, well, what are the things in place to support, you know, working through these things? And you look at mental health and you just like, people feel big emotions, they feel distress, they don’t know, they don’t know the word healing. You know, you’re told it is about recovery, you have to get better from something. But if you’ve experienced significant trauma in your life, how can you actually, you can’t recover from that. You have to heal through it. You have to learn how to hold space for that. And systems don’t acknowledge trauma.

They say trauma informed, but they don’t acknowledge it.

And so I think decolonising it, it can happen and look so differently. I think everyone has a responsibility, but what they do is they bring in identified roles and they kind of put the load back on Aboriginal and Torres Strait Islander people that that’s. You’re there to create that safety. And we’ve, we’ve ticked the box to say that we’re working towards this when realistically, you’re actually just adding more load because there’s no accountability tied to that.

And so I think, you know, having unpacked the word, even decolonising the last 12 months, and I think, you know, looking at the work of like, Chelsea Watego and looking at the community I surround myself with, that’s. That’s the end goal. I feel like it’s. We’re all aiming to eliminate racism. And how do you eliminate racism when it’s so deeply ingrained in these systems and the bias that comes through? So when I look at it, it’s. Sometimes it’s as simple as changing the language we’re using.

Sometimes it’s actually about changing processes. A lot of mob come into services and they’re never asked about their culture. Knowing how significant my cultural identity is to me, I can’t imagine now coming into a service and then having to deny such a big part of who I am and what my life is. So I can’t imagine when you’re. If you’re experiencing significant imposter syndrome, if you’re disconnected and then having a whole other part of you that you maybe have a yearning for, like I did, completely disregarded. Decolonising is actually one about acknowledging the harms that have happened, that are happening.

And it’s stepping into accountability that we can probably never move back to the way things were before colonization happened. But we do have to keep making a conscious effort of taking accountability, of acknowledging things when they’re happening and figuring out ways and working with community as well, like self determination. Like, I feel like so much of our knowledge from our elders, our leaders in our communities, there is so much wisdom that is just not acknowledged, not taken seriously, and it’s a big step forward. I feel like engaging with our communities. We have the answers of how to connect. You know, there’s. There’s 65,000 years worth of knowledge and wisdom and history that was strong in culture. And I think there’s so many of us that still try to carry that legacy on that, you know, despite everything and in spite of everything, it will not deter us from moving forward and fighting for the things that we’re passionate about. And if you won’t acknowledge it, we will keep calling it out. You can say it’s political, it’s not. The government and society has made it political because there was, you know, policies in place and, and laws in place to harm and create harm. Because colonization is still happening. Whether people like to acknowledge that or not, it is still happening. You know, you look at the stolen generations, we have some of the highest rates of child removal now. So it’s still happening. It just looks different, it’s labeled differently. You have a government that is happy to close their eyes or maybe turn their heads away from the reality of that and the impacts that is happening. So, you know, I feel like at some level the traumas are still happening, but. But I do. I do see a change in how we are responding to it.

[00:39:53] Rachel: You do?

[00:39:54] Shibs: Yeah. I think you have to. You have to see, even if it seems like the most insignificant small things, you have to hold on to that because that is what gives you hope. That is what gets you out of bed. Some days when you’re just like, I can’t go on social media because it’s just filled with racism. So you have to hold on to those little things. You have to draw on the strength of your community around you. Those connections are what keep you going.

[00:40:23] Lucy: What are the little things that give you hope?

[00:40:27] Shibs: I think it’s when you have allies really show up and, and not just show up for the good things. When it gets hard, when they show up in those times and moments when it’s genuine, you know, no one’s perfect. We’re. We’re all human, we’re all going to make mistakes. But when they show up and it’s things like watching someone actually have the opportunity to access mainstream services and not have a traumatizing experience or being able to connect with them and walk alongside them while they go through that and give them hope.

I think sometimes it’s like you don’t realize the impact you can have, or sometimes it’s just you may not feel strong within yourself, but being a strength for someone else. So I know the community I have around me. I have an incredible amount of staunch titters that also all work in mental health or in health care. And I think because we all experience those same barriers where, you know, we’re often banging our heads back in the wall, but coming together, being able to discuss that, but also drive each other of like, we’ve got this, we’re coming in numbers, we’re growing, we’re bringing people into this.

We’re nots shying away from it, even though it is extremely exhausting and hard at times. And so I think it’s like drawing back into those. It’s having enough supports around you that you’re not having to necessarily lean on one always. But it’s. You have multiple around you that if you know someone is, is feeling that exhaustion or that burnout or that colonial load, that there’s other spaces that can really lift you up.

[00:42:08] Rachel: Could you say something about or any advice you might have for those working in mainstream services how to approach conversations about culture?

[00:42:19] Shibs: I think it’s coming with humility.

[00:42:21] Rachel: Okay.

[00:42:22] Shibs: Humility, I think is the biggest thing of you don’t have to know all everything.

But I think it’s coming with curiosity. It’s coming in with, yeah, the humility of that you don’t know everything.

Especially with the power imbalances that happen. If you’re a clinician and you’re, and you’re supporting a consumer or a patient or whatever you want to label it as, there’s a power imbalance that comes with that. So it’s kind of like, especially if you are unwell or your well being is heavily impacted that yeah, there’s this, this power struggle of you have to go fix someone or you have to help someone or you know, you kind of hold that power of what their treatment’s like and how they interact with the service. So I think it’s taking that humility of like this person actually has a lot of knowledge and experience that you know, can actually provide a lot of insight and a lot of strength in that. And I am forever, forever grateful that so many of the people that I get to walk alongside actually give me so much back as well. And that, that’s another driving thing is that, you know, when we’re, when we’re working with community is it is again. Yeah, that two way that learning and giving and teaching and, and showing. So it’s not coming in necessarily with that I’m here to fix you or support you. And I think sometimes that can get lost in the system. And when you’re working in the system and recognizing that people who sometimes create harm are also victims in the system, they’ve been told a narrative, they’re working under these frameworks that don’t necessarily support wellbeing but rather recovery. And you have a symptom, we need to fix it. So let’s put these labels on it and you know, we’re going to fix you, tick you off and out you go. So just bringing back the humanity at the end of the day, we’re all just humans trying to exist in a world that, you know, maybe there’s. There’s some pretty terrible things happening right now, and we all just need to actually realize that’s. That’s what, who we are at the end of the day, when we’re not a discipline, we’re not a. We’re not a title, we’re just humans trying to exist and make sense of our worlds. And I think even just coming from a very human level, you can learn so much. And, you know, asking about culture can be a terrifying thing.

But I think it’s like you’re going to make mistakes along the way, whether you like to acknowledge that or not. I make mistakes all the time. You know, we’re not. None of us are perfect. So it’s just coming in with the, with the acceptance of that. But also that curiosity of like, who is this person?

You know, what does it mean to actually work and walk alongside them?

[00:44:57] Rachel: That’s a great answer. Thank you.

[00:44:59] Lucy: Shibs from the mob you talk with, what are they saying that they need more of from services, culture and community?

[00:45:09] Shibs: I think the hard thing is, is that there’s such a long way to go that it’s obviously very individualized. It’s very. It needs to. It needs to be individualized, actually. So sometimes because people have accessed a lot of services from a young age, they like, they feel like there’s no other options. So for them it’s like actually receiving proper care or, you know, sometimes it’s needing a diagnosis. Sometime for people, it’s about, I need something to describe the experience or I need, I need to put a label to something because I need to make sense of it. For some people, it’s just recognizing that there is a lot of harm. So when you. I even look in the comparison of when you look at young mob that we support, you know, and looking at my own journey as well, like, there was a lack of understanding, there wasn’t, there wasn’t words to put to the experience.

And so I think a lot of it is just trying to understand, you know, they’re navigating really difficult things as well as all the other external things happening in their life as well. So sometimes they don’t know what they want. And it’s also, they maybe have a lack of connection. And I think that’s the thing that’s probably the core of everyone is that connection, Connection for Aboriginal and Torres Strait Islander people is so, so important. You know, when we’re looking at connection to country, connection to community, connection to our spirituality. We’re really, you know, we’re spiritual human beings. There’s a lot that all kind of interconnects connection to our family and kin. And when you, when you’ve grown up in chaotic environments or dysfunction or the significant traumas or intergenerational trauma, there’s a lot of disconnect. I think especially with, with young mob, it’s finding meaning within that or just finding connection.

And you know, whether or not that is with culture, whether or not that is with community, it’s drawing on the strengths that they need to keep them going, and it’s having all of those supports. And so sometimes the, when they’re accessing services, sometimes that’s just the gateway for us to connect with them, for then to link them in and have that connection. And it’s really about meeting the person where they’re at. Sometimes they’re not ready to kind of unpack that whole cultural identity. I for one know how messy that was for me. And you know, how even now sometimes I still struggle with that. So, you know, it’s really just being guided by them. And when you look at the older generation, when they access services, there’s a big mistrust. There’s, there’s, there’s, you know, they’ve watched loved ones go in and never come out. They’ve been impacted by the policies and, and laws that have been implemented in this country. So it’s really hard. You know, sometimes it is about just creating a sense of safety for them, of being like, we’re here, we’re in your corner, or explaining to the service of you can’t expect a person to come in and just be totally chill or like, there’s this back history to this. You know, I work in a hospital. I’m in there every day. I recently went to, I had to have a surgery on my chin, which is really random. The moment I got told I had to go into hospital, my body physically had a reaction straight away and it was going back into survival mode of like, can I identify? Is it safe to identify? I am very well aware of how the healthcare system works. This was after, you know, some events that happen in community, around racism. I was going in even though I, I couldn’t realistically tell myself it’s going to be okay because I actually knew from the people that I support, from the things that I’ve seen and witnessed as a worker that you actually can’t, you can’t say that that’s not going to happen.

So you know, for someone who is very well aware of it and you know, has worked really hard on, on establishing that for myself, even that moment of getting told I needed to go into hospital, it was just like the generations of trauma coming out of, and I had no control over it. Even now I would never go willingly go into like an emergency department if I was significantly distressed or I would never go because it’s not a safe space and I don’t think I’d ever feel safe doing that. So I can’t imagine how terrifying it is for some people coming in already at a baseline, being significantly distressed at the thought of even having to come in, let alone everything else that is happening for a person. So you definitely see some varied experiences. But overall, I think where we can build on that and where we can change that narrative is through connection.

[00:49:54] Rachel: I really appreciate the comments about connection. It’s such an important aspect of human well being, isn’t it? Is there a strong role of connection in traditional healing practices?

[00:50:07] Shibs: Absolutely. I think it’s, you know, that’s, that’s where so much of traditional healing I think is even again based on, is about connection. I saw a Ngangkari, which is an aboriginal traditional healer. They’re usually in the kind of central desert area and kind of the top of South Australia.

And I think seeing her for the first time completely, completely changed my life. It was, was such a.

Yeah. When you talk about healing, that is, I feel like healing on steroids.

It was just walking in, not knowing what to expect, but also feeling like you’re walking into a big warm hug and just instantly feeling comfortable. It was just like this. I’m exactly, I need to be here. I’m like exactly where I need to be.

And so she’s a blood healer and she explains the process to you and going through that. It was, you realize very quickly you can’t hide anything.

You can’t hide anything. And she sees things in your body that, like there was things that she spoke about to me that she saw that I had never told anyone in my life.

And so it was just kind of like, I still struggle to talk about it now. It’s just such a overwhelming.

You come out with a sense of calm. And so it was so funny because she said to me, like, she kind of taps into your energy. As, as she said, I just had this kind of chaos happening in my head and it was just like these constant thoughts. And she was like, I realized the moment you walked in your, into the door, you was you.

I was like, okay, yeah, Yep, guilty.

But walking out of there, she pulled a lot of things from my heart space and it felt like having a weight on my chest, but I actually didn’t know that it was there. And so when I sat up and it was finished, it was like when I took a big breath in, it was like I was only breathing at 50% capacity before that.

But I didn’t actually recognize that that was what was happening. When I talk about my legs, like, the amount of relief I felt, it was, you know, as I said, you go up and down. So I was currently back on some heavy medication to deal with my pain at that point.

And I. I’m now med free and I’ve been med free for going on 16 months. So.

[00:52:39] Lucy: That’s incredible.

[00:52:40] Shibs: Yeah. And it’s just like people don’t realise how powerful, you know, these aren’t just some made up voodoo things. Like, these are actually genuine. It’s genuine knowledge and practices that have been going on for thousands of years. It’s not just something that you learn. It’s when you look at, look at Ngangkari’s, they’re healers, that it’s passed down the bloodline and down family. So when I walked out of there, there were so many things happening for me. I felt an immense amount of calm, just, just this immense amount of, you know, being exactly where I needed to be. And that all of the things I’d been through in this healing journey, it all lit up until this very moment. And she said, you don’t come to me until you’re ready.

And you don’t necessarily know that you’re ready. And so I’ve now had a couple of sessions when I. When you work in such heavy spaces, sometimes your body absorbs all these kind of micro traumas and all these, all these little things in your body. And now I can recognize when my body has too much of that. And it’s kind of like when I go and see her, it’s kind of like this, this cleanse of like, you know, I’ve absorbed all of these things from people.

So now it’s time she kind of does that healing on me to let me release it. My husband also saw her and so there was a big connection for me and him as well because she could see us in each, like in each other. I came home and I tried to explain it to him, and then it was like my body just needed to release and I just cried my eyes out for hours. But it wasn’t like this, this painful, traumatic thing.

Even though these, there were Some things that came up throughout the session, it was also just. It was safe. It was such a safe space to sit in that it wasn’t overwhelming. It wasn’t. Oh, no. Like, yeah, I’m. I’m so. Like, there’s such many heavy emotions. It was just like. Like, I’m in a safe space, and this being brought up isn’t actually hurting or bringing anything up for me. It’s just being held and it’s being released. And so when I was crying, it was just like a mix of, like, just absolute, pure joy, happiness, like, sadness. It was just all of these emotions combined into one. I had all these people coming up to me after it being, like, what happened to you? Like, really, you just. You’re different.

Like, you look different, you act different. Like. And I truly believe, because me and my husband saw her, you know, she was preparing us because then we. We lost Mitch’s dad a couple of months later.

I think she was preparing us.

I think it was just, like.Just instilled this amount of, like, strength within us that I don’t think we would have gone through that and come out of it as strong as we did. And I think even just the bond between me and my husband grew so intensely, and it was like, you know, you’re going through these really hard, painful moments in your life that, you know, the. The overwhelming amount of grief that we felt through that, but the amount of strength that we were able to draw on from each other. And so it was like, even just reflecting on that whole year, it was just like. Like, we had some of the most painful things happen in our lives.

We also. I also lost my soul dog, like, a couple of months after Mitch’s dad. So it was like going through both of those, like, significant, really heavy grief, but it was still one of the best years of our lives.

You often. Sometimes when those things happen, you can really let them drown you, you know, and going and seeing her again and her being able to pick up all of that in our bodies, and, you know, obviously you do hold some grief, but to watch how we kind of transformed that, and it was just like, the strength that we were. We came from that. So, you know, Absolutely. It changed my life. It changes my life every time I see her being also this. This cultural element that we also touch on in my sessions as well. But I think it’s like these. These are things that aren’t utilised, and knowing how much of an impact it’s had on my life, people don’t understand the power of those things. And when you also are drawing on the strength of connection with your culture as well, there’s something really beautiful and magical that happens, that doesn’t. Systems refuse to see, refuse to acknowledge.

And I hope to see a day where there’s a medium ground where we can come into those spaces and have access to both. Recognizing that, you know, Western medicine does play a part in some things, but also the traditional healing has a place and it needs to be respected and really upheld in that space as well. Connection and healing and, you know, it’s, it’s all interwoven. It’s, I think in, when you look at, in Western ways, it’s. They very much separate the two.

[00:57:39] Lucy: Shibs, It’s been absolutely incredible speaking with you today. I’m learning so much and it’s been an absolute joy. You have such. You radiate warmth and our last guest we had on recommended that you come on the podcast. “You have to get Shibs on” and I now see why.

We have one closing question for everyone. Can you tell us about an act of care, big or small, that’s really stayed with you?

[00:58:06] Shibs: So thinking about an act of care, look, I think it’s looking at the small things. Sometimes the small things are the big things. So when I go to work and I have some of the most wholesome, complex conversations, when someone shows up in the space, sometimes in their most vulnerable points of their life, and they still give you a hundred percent of who they are, even if they feel like it’s not the best version of themselves.

And I think it’s sometimes not realizing the impact that you can have on their life as well. So there’s so much that I, I come back and I, you know, I’m driving home from work and I’m on the phone to my husband, and it’s just like my heart is just, just overwhelmed by the amount of joy and happiness and just wholesomeness that I feel of being able to connect with other people like that and to hold that space and to also be able to show up authentically as myself. I think, you know, the, the compassion that people I work with or walk alongside, the compassion that they hold for me as a human, it’s hard to sometimes have self love and all of those things, but to be able to hold that for someone else and to have someone hold that for you and, you know, when you look at lift, experience, work, mutuality, that’s such a big thing. So, you know, to have that and to know that that is your job is, you know, it’s, it’s not a, a big act or small act of care that I give. I think it’s the what I receive from that and that every single person I cross paths with, I take a little bit bit of, of their story or who they are into that. So I feel like, you know, they, it’s.

I think it’s just that, that transference of connection as well, really, that’s, that’s what it really is. And so I feel grateful every single day being able to do that.

[00:59:56] Lucy: I really love that. And I can see that warm radiance radiating out of you, like just going back to the memories of that happening in the. It’s really beautiful to hear about. And it also reminds me that we’re not as individuals. We think, as you said, we all take parts of each other and become part of one another. So thank you for reminding us.

[01:00:20] Shibs: No, thank you.

[01:00:22] Rachel: I think I’ve said this a few times, Shibs, but this conversation has been so incredible.

[01:00:27] Rachel: It’s altered me in ways that I’m really grateful for.

[01:00:33] Shibs: Oh, thank you. I think it’s like such a beautiful experience to even sit in this space with you both. And, you know, it’s. I think I’ve. Sometimes when you talk about it out loud, you learn things about yourself as well. So again, it’s, it’s never just a giving thing. There’s a lot I take from it as well. So thank you for giving me that space to do that.

[01:00:53] Lucy: You’re so welcome. Thank you.

[01:01:05] Rachel: discovery college acknowledges that the views shared in this podcast reflect personal experiences and are not a substitute for professional mental health advice. They do not represent the views of Alfred Health.

[01:01:17] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website: discovery.college.

Follow The Not Broken Project:
Website: https://www.adelaide.edu.au/robinson-research-institute/critical-and-ethical-mental-health/not-broken-project
LinkedIn: https://www.linkedin.com/company/the-not-broken-project/posts/?feedView=all

Check out Johann Hari’s book, Lost Connections: https://thelostconnections.com/

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

 Incredible artwork @sharleencu_art

 Shout out to Amplify for welcoming us into their recording studio

EPISODE TRANSCRIPT- Not Broken

[00:00:00] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:13] Rachel: Discovery College acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:31] Jon: We’ve been talking for years about people being broken hearted. Nobody wanted to give you heart medicine for your broken heart, but they do want to give you brain medicine for your broken brain. The danger is that people think that because we’re saying your feeling of great distress shouldn’t be dealt with medically, that we’re not respecting the distress, we’re not taking it seriously enough. That’s not the case at all. We know how horrible people can feel. They get to the point of wanting to end their lives. It’s not necessarily, or even most often a medical problem.

[00:01:11] Lucy: I’m Lucy.

[00:01:12] Rachel: And I’m Rachel and we’re the hosts of the Extremely Human podcast.

[00:01:16] Lucy: Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria, or moments that feel completely unreal.

[00:01:28] Rachel: On Extremely Human, we hear from people who’ve been there and share what they’ve learned along the way. Together, we ask, how can we meet the full range of human experience with kindness and compassion?

In this episode, we speak with critical psychiatrist Jon Jureidini about what it really means to be not broken. We explore why psychiatry often looks for simple solutions to complicated problems, how diagnosis can both help and harm, and what it looks like to support someone through tough times instead of shutting those feelings down.

This episode is a reminder that not every heart experience is a medical problem, and it doesn’t mean we’re broken.

[00:02:23] Lucy: Welcome back to Extremely Human. We’re here in Adelaide with Jon Jureidini, who’s actually been requested to be on the podcast. Did you know that, Jon?

[00:02:33] Jon: No, I didn’t.

[00:02:34] Rachel: Special request of listeners.

[00:02:36] Lucy: So, Jon, we have a starting question for all our guests. The question is, what’s something ordinary that’s felt beautiful to you recently?

[00:02:45] Jon: I guess last night, sitting outside eating with family and friends and magpies who used to inhabit our back garden hadn’t been seen for some weeks or months. And they reappeared. Five of them reappeared last night and were flying. And then a bin chicken came into the garden and there was the kind of territorial battle between the magpies and the bin chicken. And we.

[00:03:15] Lucy: Oh, really?

[00:03:16] Jon: We had to chase the bin chicken with a soccer ball to get rid of it so the magpies could have first use of the garden.

[00:03:23] Lucy: I’m beginning to feel sorry for bin chickens. They’ve got a bad reputation.

[00:03:26] Jon: They have.

[00:03:27] Lucy: No one likes them.

[00:03:28] Jon: Rehabilitate bin chickens. These are task for you.

[00:03:32] Rachel: Maybe we can start by getting you to tell us a little bit about yourself.

[00:03:35] Jon: Okay. So I’m a psychiatrist, critical psychiatrist. I’m very uncomfortable with a lot of what happens in psychiatry. My main contribution has been holding to account the misrepresentation of research that’s led to an overly positive view about medication, particularly antidepressants in children, adolescents, which is my area.

My starting position in life is always to be a bit critical and skeptical about things.

And so there’s plenty to be critical and skeptical about. The literature and evidence base for prescribing in young people. And so that’s kind of captured by attention.

And the frustrating thing is that you can present evidence which really clearly refutes the mainstream view about prescribing and it has little or no impact on practice.

[00:04:33] Lucy: I was interested to know what it’s like to be critical of your own discipline.

[00:04:39] Jon: It’s interesting. There are a lot of people who like within the profession who like at least some of what I say, but they not very public about that.

[00:04:52] Lucy: Yeah.

[00:04:52] Jon: So they’ll tell me one on one.

Great that you do that.

[00:04:56] Lucy: Yeah.

[00:04:56] Jon: But very few people speak out publicly in support of the position that we adopt.

So that can be a bit disappointing. I’ve never had any overt attacks on me. But you feel like you’ve sometimes excluded professional opportunities or things like that that don’t come your way because people don’t much like your perspective on things.

[00:05:20] Lucy: What is it that they don’t like particularly?

[00:05:23] Jon: Well, it’s a. I mean if. If you take what I and others say about some of the problems with the way psychiatry is practiced, that’s a substantial cognitive and emotional dissonance for somebody who’s practicing in that way.

[00:05:39] Rachel: Yeah.

[00:05:39] Jon: And the kinds of things that we’re criticizing are relatively straightforward.

Like to implement like medicating somebody or hospitalizing somebody or putting them under treatment orders. That’s all you feel really that you’re doing something.

And to say take a step back. It’s more complicated than that. The harms are more than you might have realized, the benefits are less than you’ve been told.

That’s not very comfortable.

[00:06:13] Rachel: The Extremely Human podcast is about how we think about and respond to people experiencing altered or extreme States, how does that show up in your work with young people?

[00:06:24] Jon: The most common presentation to emergency acute services in young people relates to suicidal actions or thinking that scares people, often including the person themselves.

What tends to be the response to that, quite often mandated by the services that people work for, is a risk based response.

And even though there’s clear scientific evidence to show that risk appraisal tools don’t work, we’re still, people working in the public sector are still obliged to use them.

And so rather than thinking of a suicide attempt or people expressing a wish to end their lives, rather than that being taken as a communication that the person is overwhelmed and needs some scaffolding and support and understanding, it’s a signal to prevent that person from killing themselves. And young people. I’ve had more than one young person say to me, look, there was no problem about me trusting that that doctor didn’t want me to kill myself, but I didn’t feel at all that was anything about me, it was about them looking bad if I went out and killed myself. So it’s. So it, it kind of robs the interaction of what’s potentially healing about it, which is that a vulnerable person comes at a time of crisis. When we know at times of crisis we’re more susceptible to change and to reflection and so on. If the crisis is not so overwhelming that we simply can’t think so there’s an opportunity that just with what might seem to us to be a relatively simple, compassionate, humane response to somebody, we can make a real difference to them. But instead we’re too busy ticking boxes and making diagnoses and doing all kinds of things that the system demands of us. But it’s not what patients are asking for.

[00:08:36] Rachel: You feel like that’s system driven as well as fear driven?

[00:08:39] Jon: Yeah, well, the two things are the fear pervades the system and the system responds to reduced risk, risk to, to risk of reputational damage and risk of.

I mean, I’m not suggesting that it’s completely cynical and that people don’t care about the young people who are coming to them, but the priority is how, how is it going to look for our service?

We know that helping people is inevitably a risky business. Like they come to you at a time of risk.

It’s not reasonable to expect that you’re going to end the interaction with them, with everybody feeling that now life is completely safe and can progress without any complications.

And often the question that you need to ask is, we need to ask ourselves is what’s the least worst option here? Like you know, it’d be great if we could have the best option, but usually it’s not available too often in health systems.

The least worst option, default, is the risk averse option. I don’t think that’s right. But, but also we can’t expect junior unsupported staff to be taking good risks. Yeah, you can only take good risks if you’re working in a safe work environment where you’re getting support. There’s an opportunity for reflection. You can share responsibility with other people and make a decision that none of you are very comfortable about. But it feels like what is most likely to be helpful to the young person.

[00:10:22] Rachel: You started talking about suicide concerns. How different or similar are other presentations that young people present with and what they need from services?

[00:10:32] Jon: People presenting after something bad’s happened in their life, they’ve been assaulted or been in some kind of accident, or they’re ill in some way, that’s scary for them.

I think we do a better job with those kinds of presentations. I mean, the same concerns exist around being too ready to make a diagnosis, being too ready to prescribe medication or some kind of manualized therapy. But I think it is more of a less of a systemic impediment to being able to do work in those situations. You know, the sorting process, the triaging process is problematic because you’re doing that on the basis of what pattern is the person presenting with. So is this an ADHD pattern or a depression pattern or a psychosis pattern?

And that these are final common pathways for very diverse sets of circumstances that lead a person to run out of resources to deal with things in what we might regard as a constructive, positive way. And so they’ve fallen back on some kind of coping mechanism that causes them and other people trouble. That’s what we’re seeing in mental health. We’re seeing people who’s, who are making their best attempt at coping with circumstances, whether it’s through suicidal behavior or disruptive behavior or whatever.

If we sort them according to the pattern of disruptive coping that’s evolved, we’re not really understanding them. Two people presenting with what might be classical, like, you know, completely out of the textbook pattern of a major depressive episode, and then a third person presenting with what’s out of the diagnostic manual, an ADHD case.

But actually the two depressive cases have got virtually nothing in common. And one of them has a very similar story to the person who’s now being labeled with adhd. So if you just sort them according to their diagnostic labels, you’re Going to miss the most important part of the story.

[00:12:53] Lucy: Jon, I’ve heard you speak about developmental breakdown in relation to extreme states. It’s the first time I’ve heard that concept. When I did a quick Google search, not much came came up. So I was wondering if you could explain that and how it relates to extreme states?

[00:13:10] Jon: Yeah. The principle is that perhaps particularly in adolescence, we cope with our life circumstances. We develop coping patterns and coping styles that might serve us well. So to give a concrete example, we might have a child who’s growing up in a family where there’s a lot of parental conflict and the child develops a kind of pacifying role in that family. So they get good at distracting one or other parent when they’re worried that the level of hostility is becoming scary.

And so that kind of more or less works. The family reaches a homeostasis where life goes on. People are able to get on with their daily activities without too much impairment. And from inside and outside, it looks like, and is, I guess, a reasonably functional family.

But then as the young person gets to adolescence, frequently there’s not necessarily consciously, but there’s a kind of reflection and a recalibration about what they want to be. And maybe the young person realizes that they don’t want to be the peacemaker in the family, that the cost of that in terms of emotional constriction is not working for them.

And so they begin to experiment, and that. That conjures up the idea that they made a deliberate decision to do that. But they kind of, you know, it evolves that they start to engage in some kind of disruptive behavior that they, you know, might, instead of pacifying, tell one of their parents to off or, you know, respond in an aggressive manner. And that might evolve into something that looks like a clinical presentation. The person becomes moody and withdrawn and doesn’t want to sit with the family, goes to their room, starts to miss school.

What is very easily interpreted as a diagnosis, as a medical problem, and looks to even a reasonably careful observer like a deterioration in functioning.

But actually it’s progress, it’s development, it’s. The person is opening themselves up to a much more, much broader emotional repertoire.

And it’s clumsy and awkward and unpleasant for them and unpleasant for other people. And so it can easily be interpreted as sickness. If what you do is intervene at that point to dampen down those new emotions, either with drugs or other means, then you can see that that developmental breakdown gets suppressed. What instead is needed is scaffolding to allow the young person to go through the experience and come out the other side of it. That scaffolding, it’s different from just being totally permissive and saying, okay, I know you’re going through a difficult time. Just do what you like, you know, swear at me, leave your stuff all over the house, drink, use drugs. Like, I know you’re going through something difficult, just do it. It’s not that there still need to be the ordinary family responses to behaviour that’s dangerous or unacceptable or whatever, but you’re not trying to make the pain go away at all cost.

We don’t want our kids to be in pain, but we also don’t want to numb them so much that they can’t feel pain, but can’t feel anything else. And that developmental breakdown is not kind of trivial. It might end up being, you know, quite severe drug use problems or worrying, dangerous suicidal behavior or something that looks like psychosis. It’s understandable that people panic in the face of that and do things that suppress it. It really takes a lot of effort and experience and wisdom to be able to discern which of these out there emotional and behavioral characteristics need to be respected or not. Not stomped on.

[00:17:21] Lucy: Yeah, that makes a lot of sense. Now that you’ve explained it in that way, we are very quick to shut down natural developments. Is that. Is that true for all young people in your perspective?

[00:17:31] Jon: No, it’s not. I’m not saying that every time an adolescent gets into a situation of distress that that’s a positive developmental event. One of the things that is a bit of a clue that it might be developmental is when you see this happen in people who have had what appears to be relatively good adjustment up to that point. And, and there’s been a significant change.

And so that, on average, I think, is more likely to be one of those developmental breakdowns than somebody who’s been troubled all their life and, you know, things have just got worse during adolescence. Kind of helps me to sort it a bit.

[00:18:11] Lucy: Yeah. Thank you for bringing that idea to this podcast.

[00:18:15] Rachel: Jon, you’ve mentioned a few times concerns about rapid or reactive diagnosis.

Is there a role for diagnosis in your mind?

Where or when it can be helpful?

[00:18:27] Jon: So diagnosis, the kind of literal meaning of it, refers to distinguishing between different explanations.

And so you diagnose somebody with appendicitis, you’re really saying that they don’t have Crohn’s disease or, you know, what might be the alternative explanations for what’s going on. And it has to be from. For diagnosis to be meaningful, it has to be explanatory that is, as soon as you say somebody’s got appendicitis, you know that that is something that’s caused by some kind of infective or inflammatory process in the appendix. And. And so that then steers the response to that.

So unless a diagnosis is serving those purposes, from the point of view of the person applying the diagnosis, it’s not going to be valuable. If I diagnose somebody with depression, given that antidepressants are, if they’re not completely useless drugs, they’re almost useless drugs. When you balance benefits and harms, given that I don’t have something that I can give that treats depression, what I’ve got some. I can give something that numbs feelings, but not something that treats depression, then there’s no value from me as a doctor making a diagnosis of depression. However, for the patient, having the label of depression might be something that’s helpful to them. It might be, you know, okay, so we’ve now got a name for what I’m experiencing.

I’m not a unique person here. Lots of people go through this experience.

People who have this label find these things helpful, like these interventions helpful.

So there can be benefits to the patient from having a diagnosis, but as with any label, there are also harms from it. So there’s a loss of agency that goes with attributing difficulties to some kind of process that you have no control over. There’s the risks of getting stereotyped treatments for a condition that don’t actually work or aren’t actually helpful. There are always harms and benefits. But if, for example, I can make a diagnosis, that matters. So one of the few times that this has happened to me was a young person who was engaging in a bizarre set of behaviors. They were eating everything that was available to them, whether it was, you know, appropriate to eat or not. They were very sexually disinhibited. And then they’d fall asleep and sleep for 16 hours, and then they get up and the cycle would start again. That was referred as a psychiatric problem because that’s what it seemed to be, these bizarre behaviors. But might this person be psychotic or have some kind of dissociative disorder? It turns out there’s a rare neurological condition called Kleine Levin syndrome, and that’s what this young person had. And so they didn’t have a psychiatric problem at all. They had a neurological problem. So in that case, making a diagnosis was really important because it. Even though it’s a bit of a mystery what causes Klein Levin syndrome, at least we knew that this was something that is a brain related condition that didn’t, didn’t belong in the, in the mental health sphere. I guess another more common example would be somebody with a presentation of depression. But if you know that the person’s had glandular fever, you know that a certain percentage of people who have glandular fever for several months afterwards will be, have a kind of post viral set of symptoms that might include depression. So it’s not that diagnosis shouldn’t be practiced, but we need to recognize the limitations of it. And most of our psychiatric diagnoses are descriptions pretending to be explanation. So depression, most of us know what you mean when you’re talking about depression as a shorthand description. It’s not a bad one, but it doesn’t explain anything. And so then we reverse engineer explanations like the idea that there’s a chemical imbalance, which there isn’t. But most, most people in your audience will, if they don’t now, will at some time in their life have believed that depression is caused by a chemical imbalance.

[00:22:44] Rachel: Yeah, it really is a common belief still operating in community.

I meet parents all the time that believe that it’s a chemical imbalance that’s behind their young person’s distress or difficulties in life.

[00:22:57] Jon: And doctors are still talking about it and some of them in with the idea that they don’t. They might not actually believe it, but they think it’s a useful trope to pass on to people to give them a rationale for understanding their condition and the treatment that’s going to be offered.

[00:23:15] Rachel: So it’s an acceptable lie? Yeah, because it might be helpful.

[00:23:19] Jon: Yeah.

[00:23:25] Lucy: So in a previous chat, Jon, you spoke about the importance of helping people make meaning of their experience.

What does that look like in practice?

[00:23:36] Jon: So if I have family come in and say we think our daughter’s got adhd, I’m not going to kind of dispute that up front.

We’ll talk a little bit more about what makes you think that. But first I’d like to get to know something about you and your family.

And so I try to get a bit of a feel for, you know, what social determinants might be in play, what kind of interpersonal issues are going on.

And what I’m aiming to do is to understand the most common explanation for troublesome symptoms, behaviors, thoughts, is that there’s some kind of avoidant function.

The person is doing something to avoid something else. And by the time we get to see people often what, what they’re doing to avoid it is causing much more problems than if they hadn’t avoided in the first place.

[00:24:38] Lucy: But can you give an example of that?

[00:24:40] Jon: Okay, so this is a, an example in an educational setting. Young person who is very bright but has problems with receptive language, so has trouble making sense of complex verbal instruction. So if you say do X, they have no problem. But if you say Do X, then do Y, and if A, then do B, even though they’ve got the cognitive ability to make sense of all of that, they struggle with that. Okay, so imagine a young person for whom that’s the case. And they’re used to being one of the smartest kids in the class. And they get a lot of personal gratification out of being clever. But they have these situations where the teacher says something that everybody else seems to understand and it’s incomprehensible to them or confuses them and they feel stupid and that’s the last thing they want to feel. So that’s a really uncomfortable feeling. It’s quite arousing in a negative way for them to feel stupid. And so they start to. And without any planning. But they, it evolves that they play the clown whenever the teacher’s giving lengthy instructions to the class.

And behaviors like that have a tendency to generalize that you play the clown in that particular circumstance. And it kind of works in a way.

It doesn’t get rid of bad feelings of arousal, but it gets rid of the worst of it. You’re not getting back to a comfortable state, but you’re substituting a very unpleasant state of over arousal to a less unpleasant and sometimes even rewarding state of overarousal because other kids laugh at you playing the clown. And so that gets reinforced. That becomes a pattern of behavior. Nobody’s ever really recognized the link between those two things. And so the kid is presented as being inattentive and overactive. But actually there’s nothing wrong with their attentional skills or their ability to sit still.

But the need to avoid feeling stupid overrides those skills. What looks like what we would call dysregulated or unregulated behaviour actually is regulating behaviour. This is their best attempt to keep themselves together in those circumstances. So if we don’t, if we make meaning of that, if we can understand that the kid has problems with receptive language very quickly, all those problems disappear. Even if the child themselves doesn’t develop any understanding of, the teacher gets it. If the teacher happens to notice that and formulates what’s going on and starts now to give clear, simple instructions to this boy and make sure that he never gets confused by them. Then the problem goes away. So that’s a kind of non, you know, it’s not very emotionally laden version of what’s. What happens when you make meaning. And the meaning might be grief, it might be violence in the family, it could be any number of things. But what you’re looking for is some kind of meaningful explanation of why the person’s distressed. But it’s not necessarily going to be very proximal to the behaviors. You often have to do quite a bit of work of going back to find out what the antecedents might have been.

[00:28:03] Lucy: You might see that more clearly than they might see that at some points. How do you get them on that journey?

[00:28:10] Jon: Well, I think the way in which you explore it is with curiosity and in an interactive, relational way.

So you’re discovering it as they’re discovering it. And the ideal situation, which maybe happens once every, you know, five years or something, is that somebody says, oh my God, I never recognized that. Wasn’t that stupid of me. Like, I should have seen that all along. Everybody’s hugging each other and crying and, you know, like you bottle that and get you through the next five years.

Yeah.

[00:28:45] Rachel: Can you tell us a little bit about what you’ve learned from the people you work with about how they understand their own extreme states?

[00:28:53] Jon: Well, I guess the most common thing is that when you come to see people, they’re frightened by their extreme states.

One very simple thing we can do is to validate the experience. Like once you know enough about, you don’t have to know very much. You don’t have to have a complete understanding of what’s going on. You don’t have to have made meaning of it all. But just to be able to understand a little bit about why the person might be in that extreme state and to recognize it as a meaningful response. Not something that’s been visited on them out of the blue, but something that is a reaction to something. And that idea that we can de pathologize if you like. A lot of our medical labels. If we replace disorder with reaction, if we talked about attention deficit hyperactivity reaction, then we’d be inviting people to think, what’s it a reaction to? Rather than a disorder, which is something that, you know, state you’ve got into and nobody knows how you got there, but we better get try and get you out of that state. Whereas if it’s a reaction. Well, there are two broad categories of responses you need to have once you identify what it’s a reaction to, is it Something that needs to be changed, like family violence?

Or is it something that can’t be changed? Something that’s already happened, like a bereavement that that has been undervalued or not. The distress caused by the. By the bereavement of the child has been underestimated. And so it needs to be respected in an appropriate moratorium. So I talked about scaffolding before. One thing we provide for young people at times of distress is, you know, a sense of safety and making sure that they’re still sleeping and eating and getting them to do things that they don’t really want to do because we know that it’s good for them. But there’s also the idea of a moratorium, which is making space for people just to experience, just to comfort them.

It’s very much like people be familiar with the idea of circle of security, where you provide both a safe haven, which is a place of comfort and acceptance, and a safe base which is a launching pad to get back out into the world and re engage with things. And so what we’re trying to do when we’ve got somebody in an extreme state is provide them with the comfort that they need in order to feel loved and accepted and validated, but also to begin the process of gently pushing them back out into doing the things that they need to do to get better. Somebody might say to me, I need to get rid of my depression so I can go back to school. And I say, sorry, it doesn’t work like that. We need to get you back to school and you’re still going to feel depressed, but we’ll get on top of the depression eventually. But if you don’t go back to school, we’re not going to get there.

[00:31:50] Rachel: Why do you think that these ideas are so unacceptable to mainstream psychiatry?

[00:31:56] Jon: Well, because it’s complicated and difficult and it requires a lot of reflection and you have to make yourself a bit vulnerable in order to do it. So it’s attractive to look for simple solutions to complicated problems. I often think about it as the syphilis solution. So there are a lot of people in psychiatric hospitals with the effects of syphilis, and lots of different medical and psychiatric presentations were all caused by syphilis. And once it was recognized that syphilis was causing that, we just had to give people penicillin and the whole problem went away. People in psychiatry are looking for the next syphilis. The next thing that we can find, one pill or one treatment or one response that’s going to make a whole pile of People healthy who were very sick beforehand. And there’s much more. That’s where all the money goes. That’s what all the medical research is. Money is spent on. It’s looking for the next opportunity to. To crack it and to take a step back and say, we’re not going to crack it. Life’s much more complicated than that.

People’s distress is always best understood on an interpersonal level rather than at the level of the individual. There’s brain damage. Like our brains are damaged by things that happen to us.

But we’re not going to find the cure for that by identifying the damage in the brain and then treating it. We’re going to find the cure for it by identifying the damage in the social network and interpersonal relationships. And as much as possible, healing that, or if not helping the person to come to the level of acceptance enables them to survive that. What stands in the way of our capacity to be therapeutic is that it’s hard work.

[00:33:46] Lucy: I was wondering if you hear from many people that they want to be working in the way that you’ve described and slowing down the pace of how they work with people, but the culture in which they find themselves in, in their workplace doesn’t support that. Do you. Do you hear that at all?

[00:34:02] Jon: Absolutely. In the. I mean, I.

When I’m supervising senior child psychiatry trainees, that’s one of the most common things that I get from them, is that they see a direction that they want to go with the family and the algorithms for the service prevent them from following that pathway with independent clinicians. The time pressure, the financial pressures, you know, it is. Even if you’ve got the strongest principles. Yeah.

Financial pressures are always going to play. Have an effect on us. We all know that some people are cynical about it, but there are many good people who are doing things for financial reasons.

[00:34:46] Rachel: Yeah. We’re also serving a community that is seeking instant responses and instant. Certain explanations and solutions.

[00:34:53] Jon: And too many of them are coming to us for that. We could provide a much better service if less people were asking us for stuff.

But the whole mental health discourse is about convincing more and more people that they need to see people like us.

[00:35:10] Lucy: How do we even change that? Like, it seems like such a broader issue. I don’t even. That’s a giant question.

[00:35:17] Jon: Well, I mean, I guess Not Broken, that’s what Not Broken is about. Because many of us involved in not broken have completely failed to have any impact through academic debate.

We’ve failed to have any impact through government lobbying. And so we think, well, before we give up completely, could we have some impact through interacting with, trying to introduce these ideas into public discourse, finding people with lived experience who say, wait a minute, you know, I thought that coming into the mental health system would be helpful for me, but it hasn’t turned out to be. And these guys have got a different idea about how you might approach distress.

Maybe there’s some truth in that. Maybe I want to talk to my friends about that or my local member of parliament or whatever.

[00:36:03] Lucy: I think that’s a great segue. So you and Rach are part of The Not Broken project. Can you tell us a little bit more about it?

[00:36:10] Jon: The overall goal is to get people to not assume that very significant distress, distress that matters, the fact that it matters doesn’t automatically make it a medical problem, a problem of life.

We don’t want people to suffer for the sake of suffering, but suffering is an ordinary part of life, and we shouldn’t be too quick to conclude that dampening down suffering is the right way to go. So we should respect people’s ability to go through distressing times and come out the other side of it. Not to think that somebody who’s still miserable a couple of months after their partner’s died needs medical treatment. So what do you have instead? Well, what we want instead is support from family and friends and communities.

Now that’s lacking in our society. And so you can see where the drive is coming from for people to seek it out in the medical system. Because on the whole, mental health and medical professionals can be kind and validating and nurturing and so on that level, it’s not a bad place to go looking for something that’s, that’s not available in other places. But the trouble is, once you go looking for it there, on average, what you’re going to find is a very medicalized response that is going to likely do more harm than good. So what Not Broken is trying to do is to convince people that there are better places to go looking for ways to deal with stress. And so the broken metaphor is very powerful. Like you do, if you’re bereaved, you do feel broken, you do feel sick.

It is in that sense an illness. And so the drive to take it into the medical system and for the medical system to do something about it is very strong. We’ve been talking for years about people being broken hearted, which was, I think, a much more benign metaphor than a broken brain. Because nobody wanted to give you heart medicine for your broken heart, but they do want to give you brain medicine for your broken brain. So the danger is that people think that because we’re saying your feeling of great distress shouldn’t be dealt with medically, that we’re not respecting the distress, we’re not taking it seriously enough. That’s not the case at all. We know how horrible people can feel that they get to the point of wanting to end their lives.

That’s not necessarily or even most often a medical problem.

[00:38:40] Rachel: I think I would just think about how the role of social prescribing fits. If we hold a position that someone’s not broken, what does that open up in terms of possibilities?

[00:38:50] Jon: So social prescribing kicks in when somebody finds their way into the medical system, but the clinician judges that it’s not a medical solution or treatment that’s available, it’s a social treatment. And so in order to fit that more comfortably into medical discourse, we call it a social prescription.

So it’s anything that involves making suggestions or recommendations about changing the person’s life circumstances, whether it’s lifestyle changes or seeking financial counseling for financial difficulties. The danger with it is that it is still locating the problem with the person and expecting the person to come up with the solution rather than looking at more upstream social factors like social inequality and housing insecurity and family violence and all those kinds of things. Although social prescribing is a very valuable tool, it still has to be conceptualized and thought about in the context of recognizing that it’s not dealing with problems at their source. At their source, it’s a down downstream intervention, but a more, I think, developmental, benign, health giving, health promoting. So if you just take, for example, the. Whether you give antidepressants or exercise for somebody with depression, there’s not much to choose. Neither of them have very dramatic effects. But if you think, well, if exercise is no worse than drugs, wouldn’t exercise be in general a healthier option to recommend for people? You know, nobody’s arguing that exercising is going to get to the root cause of the person’s problem, but nor does giving medication.

[00:40:41] Lucy: What are some other examples of things that are commonly socially prescribed?

[00:40:46] Jon: I think, you know, any social prescription that involves enriching people’s social connections is going to be more desirable than something that just involves them doing something by themselves. By, I mean, old fashioned form of social prescription. Prescription for somebody with a drinking problem would be suggesting them going to aa. And for some people that’s life saving and life changing and, and there’s nothing medical about it. I mean, there are all kinds of religious overtones that might Be uncomfortable for some people. It’s not a medicalized approach to the problem. So anything that increases social connection. There’s a wonderful book by Johann Hari called Lost Connection that I think spells out some of the. And these are not in. In that book. They’re not so much social prescriptions identified by clinicians, they’re things that have evolved in through people’s limited social networks, allowing an expansion and an enrichment of those networks.

[00:41:43] Rachel: Are there other possibilities that become available to people when we stop thinking about the situation being related to a broken brain?

[00:41:51] Jon: Yeah, I think the other thing is about the person helping the person to become a protester, an advocate, you know, I’m always struck by how beneficial a legitimate advocacy role can be for people who’ve got into a situation where their level of functioning engagement has become quite compromised. And finding a voice through a lived experience, organisation or some such has been really powerful experience for them. Unfortunately, the consumer movement has been kind of co opted in typical capitalist fashion. So what you see is psychiatrist and consumer standing arm in arm saying we need more beds or we need more clinics or we need more money. What I think is healthy engagement from people with lived experience is, is that they’re actually saying you’re doing a shit job and you need to do better, not you need more money or we need more of the same.

And so that is something that some people can do. And I’m not expecting that that’s something that’s in everybody’s repertoire, but that’s something I think that we as clinicians can. You’ve got a really important story to tell. Have you thought about writing it?

[00:43:11] Rachel: As you’ve been talking today, particularly about the story of the child in the classroom, I’ve just been thinking a lot about the role of shame. What role does shame play, do you think, in perpetuating problems and the way that individuals see themselves?

[00:43:28] Jon: A really central role. We would do almost anything to avoid shame. So people will very rarely come to us and say, I need your help because I feel shame.

They’ll present us with another feeling, whether it’s despair or anger or fear.

And our job is to discern what other feelings are behind that.

I think of people as sort of having a particular card that they like to play or that they do play. I’m interested in the cards they’re not playing.

And shame is often one of those.

That’s what drives the avoidance. And that’s one of the reasons why I’m skeptical about two very prevalent interventions that happen not just in mental health, but more broadly. One is behavior modification and the other is motivational actions. I’m not talking specifically about the term technique of motivational interviewing, but trying to motivate people.

And both of them share this idea that if you reward people for the behaviors that we agree are positive, then that’s the best way of achieving change.

And it’s often presented as though you can give rewards without punishments.

And the language is you often talk about conflict, consequences rather than punishments. The reality is that there’s no reward without punishment because the absence of a reward is a punishment. And more powerfully, the absence of a punishment is a reward. That’s where the avoidance comes in. And so if we engage in some kind of attempt to motivate somebody by giving them rewards, how can that be successful? It has to override whatever internal reward and punishment processes are going on. So, you know, in a simplified kind of way, a lot of our decision making in life is, is based on is that going to feel good or is that going to feel bad. So is that going to be rewarding or punishing? And so we make the choice that we think is going to be more rewarding. And as we become more sophisticated, we’re able to take the path that initially is more punishing, but ultimately will be more rewarding. But actually what we’re looking for is, is what makes us feel best. So what we’re saying that in competition with that internal system, in ignorance of that internal system, we’re going to put in place an external system of maybe a star chart or something that feels like it might be rewarding, that might trick the person into trying harder. And if they try harder, they might succeed. And if they succeed, they’re going to feel good about themselves.

And that’s going to be a successful intervention.

But for every time that happens, it doesn’t work. And there are a couple of reasons why it doesn’t work.

One is that the extrinsic reward and punishment system is trivial compared to what’s going on inside. So you want to reward me for sitting still in class. If I sit still in class, all these thoughts about my dad belting up my mum come back to me. Your rewards and punishments are trivial compared to that. So I’m not going to play this game. The second reason why they likely to fail is that the person’s already trying really hard.

And people are more like hares than tortoises. They try and then they give up, and then they try and then they give up. And it’s easy to catch people not trying and to assume from that, because they’re not trying right now, that they’re not actually trying to resolve the problem.

So what your reward and punishment program is doing is saying try harder and they might try harder, and then they fail and they have a greater sense of shame and failure. And so they’re worse off than when they started. All you’ve done with your motivational attempt is to make them feel worse about themselves. And so this is where making meaning becomes important. If you can work out what it is that the person, person’s avoiding, then what you can do, instead of following the guidelines of operant conditioning, which is about rewards and punishments, you follow the guidelines of classical conditioning, which is about desensitization.

And so if you identify what they’re avoiding, they usually weigh away from there and what they’re doing. And so together you can work out baby steps towards resuming an ordinary range of activities. So somebody who’s not going to school, you discover that it’s about anxiety, as it often is about what’s happening at home.

Ideal response to that is to deal with what’s happening at home. But let’s say you can’t, so you don’t expect them to suddenly go back to school full time.

You take gradual steps to overcome the avoidance and for the person to build their confidence and to become less aroused by their attempts to overcome that avoidance.

[00:48:45] Lucy: So, Jon, this has been a very refreshing conversation to have with you today.

[00:48:49] Jon: Thank you.

[00:48:49] Lucy: Out of everything that we’ve spoken about today, or maybe we haven’t touched on it, but what message do you feel is most important for people to take away about extreme states and the way we approach them.

[00:49:01] Jon: So extreme states need to be taken seriously, but that doesn’t mean that there’s a medical solution, intervention needed for the extreme state. Our response to somebody else being in an extreme state, we need to try to manage our own anxiety that’s rightly caused by being in the presence of somebody in an extreme state and make sure that we don’t let that anxiety lead us to make bad decisions or decisions aren’t in the best interest of the person who’s struggling.

[00:49:31] Lucy: That’s a beautiful summary.

[00:49:33] Rachel: All right, Jon, up to our wrap up question, I wonder if you can tell us about a time where you’ve witnessed an act of care, either big or small, that’s really stayed with you.

[00:49:45] Jon: It’s a kind of personal one, really.

Got a phone call in the middle of a teaching session several years ago from a very distressed friend telling me that her husband had just killed himself.

And the care that was mobilized around that family at that time was amazing. But I have to say that my wife Julia’s year of devotion to her friend that followed was amazing. Amazing to witness that somebody would kind of give over their life, not in any kind of mawkish or self congratulatory way to help the person through that unmanageable experience.

[00:50:30] Rachel: I feel really moved hearing that. Thank you, Jon.

[00:50:32] Lucy: I feel like a lot of us, we get into the mental health world with good intentions and bright hopes for the future and we find ourselves in sometimes systems or situations that can be harmful. So speaking you today has just like been a beautiful way to strip back of why we started in this work. And I feel like you’ve just been a compass, like navigating like this is what we’re here for. This is what we’re here to do with people that we care about. The Not Broken project. How can people get involved?

[00:51:03] Rachel: Yeah, it’s easy to check us out via our website, notbrokenproject.com.au I think we’ll put it all in the show notes Luce, won’t we? But on the website and on our LinkedIn page, people can see things that are coming up, like webinars and other ways of getting involved.

[00:51:19] Lucy: Thanks so much, Jon. It’s been a delightful conversation with you.

[00:51:22] Rachel: Thanks for everything you do.

[00:51:24] Jon: Thank you.

[00:51:37] Rachel: discovery college acknowledges that the views shared in this podcast reflect personal experiences and are not a substitute for professional mental health advice. They do not represent the views of Alfred Health.

[00:51:49] Lucy: Thank you for listening to our podcast.

[00:51:50] Rachel: If you wanted to stay in touch.

[00:51:52] Lucy: Or learn more about discovery college, please head to our website, discovery.college.

Mentioned in the episode:

Check out Jehan Casinader’s book: This Is Not How It Ends

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

 Incredible artwork @sharleencu_art

 Shout out to Amplify for welcoming us into their recording studio

EPISODE TRANSCRIPT- Tūrangawaewae: A Place to Stand

[00:00:00] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:13] Rachel: Discovery College acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Hayley: When you’re in an extreme state in terms of illness and things like that, it’s kind of like you sort of are struggling with who you are. And to read that like it wasn’t positive at all, it just feels like sort of in a way that you’re being ripped right open and that someone else is making an opinion about you and what your story is and what your life is like. It was quite hard to read the words.

[00:01:06] Lucy: I’m Lucy.

[00:01:07] Rachel: And I’m Rachel and we’re the hosts of the Extremely Human podcast.

[00:01:11] Lucy: Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria, or moments that feel completely unreal.

[00:01:23] Rachel: On Extremely Human, we hear from people who’ve been there and share what they’ve learnt along the way. Together we ask, how can we meet the full range of human experience with kindness and compassion?

[00:01:47] Lucy: In this episode, Hayley shares her story of resilience, living through abuse, depression and misdiagnosis. She reflects on what it means to rewrite your story and how nursing has become her Tūrangawaewae, a place where she feels grounded and connected to something bigger than herself.

[00:02:05] Rachel: Welcome back to the Extremely Human podcast. I’m so excited to welcome our new guest, Hayley with us today. Hi, Hayley.

[00:02:11] Hayley: Hi, Rach. Nice to see you again..

[00:02:14] Rachel: Yeah, you too. Thanks for joining us.

[00:02:16] Hayley: You’re welcome. It’s really good to be here.

[00:02:18] Rachel: I think, you know, but we’ve got a bit of a standard opening warm up question that we like to ask all of our guests. What’s something ordinary? That felt beautiful recently.

[00:02:27] Hayley: My mind’s so busy most of the time, so basically just having an empty mind and being able to just be with my two dogs. My two. I’ve got two little dogs just walking, going for a walk around the block. It was extremely ordinary and we were just. Yeah, I had no phone, so no expectations on my time. Just being. It was really nice. Really, really nice.

[00:02:50] Rachel: I love that, actually. Yeah, there’s sort of beautiful, ordinary moments. I agree. What are your dogs? What sort of dogs are they?

[00:02:56] Hayley: So I’ve got A schnauzer, Shih Tzu, cross Lulu, and then a Jack Russell Oscar. And he’s seven, so he’s a bit…

[00:03:04] Rachel: Okay, I’m going to tip that. Oscar’s naughty.

[00:03:06] Hayley: He is. He’s a Jack Russell. Yeah.

[00:03:09] Rachel: So, before we get into things, Hayley, I’m wondering if you can tell us a little bit about yourself.

[00:03:13] Hayley: Yeah, I’m Hayley, as you can tell by my accent, and sometimes there’ll be giggles from some of the words that. How I pronounce some words is I’m a New Zealander.

I’m fairly new to living in Australia.

I’m a nurse, I’m a friend, I’m a daughter. I’m a partner. Yeah. There’s lots of facets to me that make me who I am.

[00:03:40] Rachel: What a nice introduction. Yeah.

[00:03:42] Lucy: Well, it’s lovely to meet you. We haven’t met officially, so. So we’re going to hear a little bit about your story today. We wanted to ask if you could take us back to some of the early chapters of your childhood and what were some of the challenges for you growing up?

[00:03:58] Hayley: So, when I was three, my brother joined the family, and my parents were very busy people, raising two children and working. When my brother was three months old, he stopped breathing.

What’s called sudden, unexplained death of an infant. He stopped breathing and my mum had to resuscitate him.

And after that, he had a lot of challenges with development and challenges that my mum needed to. Needed to be there for him and be present for him.

So I spent a lot of time, sort of like, in a way, raising myself without that sounding horrible. When I was three and a half, I was sexually assaulted by someone. So that sort of changed the trajectory and my. In a way, my development of how I developed as a child. I spoke to my mum about it as an adult after I’d healed and dealt with that part of my story. And I said, how come you didn’t, how come you didn’t understand or didn’t realize that things were, you know, weren’t there any signs or anything? And she said, Hayley, you are such an independent little girl that there just never seemed to be an issue. You just sort of got on with things. I was very much into my dolls and my teddy bears, so I spent quite a bit of time as a younger child. I think I blocked everything out. In fact, I know I blocked what happened to me out.

And I just. I spent a lot of time with my teddies and my dolls in my room. And then later, music and reading and my friends became my sanctuaries and my safe spaces. I was also affected in other ways by how I. How as a child, I perceived what was safe and what wasn’t. I suppose as a child I could see as well, like, my mum and dad were extremely busy with my brother. And, well, when my mum wasn’t busy with my brother, my dad was working to keep the family financially going.

And I just. I think maybe I intercepted that and thought, oh, well, I can’t talk to Mum about how I’m feeling or what I’m. What’s going on. For me, it’s not important. What’s important is her with Blair.

My parents, despite their challenges as humans, and I have carried this into my professional life and in my personal life, particularly when I worked in the education space, that parents do the best they can with the tools and resources they have at the time.

So, like, I don’t hold any blame or anything as to how I developed or how I. Or what happened to me, to my parents. It just is what it is and we learn and we grow from situations. I remember telling my dad as an adult and I remember distinctly putting.

Putting it out there and I just said to him, you can’t do anything about it. It’s not. It’s not for you to take on any blame or anything like this, but it’s just for understanding, because I want you to know, part of me was like, I’m kind of glad that Dad’s physically unable to deal with this as a strength thing because he went all primal and all dad on.

He’s like, oh, I would have done something about it type thing. And I was like, I’m kind of glad I’m telling you now in a way, because then you.

You can’t. And Mum. Mum sort of went a bit silent and she goes introspective when dealing with a lot of, like, big emotional things, basically because she doesn’t. Just doesn’t know how to respond or she doesn’t know what’s right. And I just said to her, I just wanted to tell you, for understanding as to how certain things have happened in my life and perhaps give you an understanding as to why they happened. We haven’t really spoke about it again, but that’s just who my parents are. Like, they feel like it’s just who they are as people. It’s like, what. Once it’s spoke about, that’s it, that’s done, we finished, move on. Yeah, I think it’s kind of a generational thing as well, yeah, totally. Yeah. Yeah, so. And that was fine.

[00:08:13] Rachel: My gosh, I feel really moved hearing you speak of your parents, actually, Hayley, and just your generosity, just that generous way of thinking of what it would be like for them to hear this and thinking about how to share it with them.

[00:08:28] Hayley: I spent a lot, maybe three sessions with a counselor dealing, who was. Dealt with sexual abuse, on how to even approach my parents about it.

And she kept, she was, she was very persistent and very resilient in the sense that she was like, well, what if, like your dad, you know, he doesn’t keep good health, passes away and you feel like you haven’t told him? How do you think you would feel then? And that was quite a big, probably defining moment in me understanding that I needed to actually share that with him because I would have felt that guilt, I think, from not sharing. I think the counsellor, in her wisdom and knowledge knew this as well, that it was part of healing, being able to stand up and like, not feel like you’re keeping things in.

[00:09:23] Lucy: It’s okay if I ask if your parents knew who that person was who abused you? Did they have any relationship or was it.

[00:09:32] Hayley: Yeah, they did, they did, they did. It was someone that they knew, friends of theirs, but not, not the friend, a relative of, of their friends. Yeah.

[00:09:44] Lucy: Okay. So not in the close inner circle.

[00:09:46] Hayley: Not. Yeah. And then after about four, four, three years after that event, they moved away.

So it was kind of like, oh, it’s finished now. I don’t have to keep looking around to make sure that I’m safe type thing.

But I do remember when I was about 8 or 9, they, including the offender, came back to the town that we lived in and. And they were also friends with mum and they were friends with mum and dad’s other friends who are in the circle. And I remember I didn’t quite understand the context of everything, but I just, as an eight year old, I was like, danger, danger. That person’s not safe. And I could, I couldn’t place it or put it together as to why this person didn’t feel safe.

And I remember distancing myself and I remember running over to my mum trying to get protection as a child, as you do, you’re feeling hurt, you’re feeling scared, you want to be nurtured. And she was, just didn’t understand and I didn’t have the communication tools to tell her either. And she was like, what are you doing? Go out and play. And yeah, and then I never saw that person again after that. So, yeah.

[00:11:07] Lucy: Thank you for sharing that with us. Such a horrible thing to happen at such a young age as well.

[00:11:10] Hayley: Yeah.

[00:11:10] Lucy: And to carry that around. What was that like, to have something that big, like, weighing over you?

[00:11:17] Hayley: I didn’t perceive it as hard until I started, like, putting it together. Like, I kept. I made all these. My. The way I dealt with things was to just keep working, keep pushing it to the back of my mind. No, nothing happened. Nothing. Denial. Denial. Because it’s not just a river in Egypt, when it came to me with that, if I just keep doing things and working harder, it’ll get further away and I won’t have to deal with it anymore.

But that wasn’t the case. And I kept making these. I looked back and I kept seeing that I was making these patterns in my life. Part of my professional working life. And the studies that I had were working in the humanities space, so working in teaching with children and then in the health space. And I was like, yeah, this is starting to sort of like, not. Can, like, not confront me, but in just sort of, like, little ways, it was like, ah, okay.

And then there was something that I wanted to achieve as an adult that I thought, wow, if I don’t actually deal with this, I’m not going to be able to achieve what I want to achieve.

So that’s what took me to taking the step to. Yeah. Seek the help and support to heal from that. Yeah.

[00:12:35] Rachel: So if we just go back a little. I’m curious, Hayley, how do you think those early experiences shaped how you saw the world or yourself?

[00:12:46] Hayley: I think I became more of a people pleaser. Like, I always wanted to do good and be good. I needed to be the good girl, make sure they didn’t upset anyone, because if you upset people, then they’ll get mad. I think I developed quite an anxious way about myself because I was always looking for danger.

And I had trouble trusting men in particular and placing where the people were safe or whether they weren’t. I remember really struggling with that as a child. And then when my granddad died when I was about seven as well, I had real trouble with that. When my brother was sick, my grandfather was there for me. I spent quite a bit of time with him. And then when he passed away, I was like, there’s my safe person. He’s gone. And I couldn’t bring him back. Like, so I think that kind of. Yeah, it was finding those safe people that I really struggled with as a young person after what happened.

Yeah.

[00:13:52] Rachel: Hayley, you’ve talked a little bit with us previously about some intense time you went through in your early 20s that included, you know, mental health crisis and some time under the Mental Health Act.

What do you remember most about that time?

[00:14:09] Hayley: I remember the catalyst being that my grandmother on my dad’s side had passed away earlier in the year.

And again I used the coping strategies and tools that I had had been deploying my whole life, really, to that point where if I just work more, if I just add more papers into my double. I was doing double degree at the time. I add more papers, if I work longer hours, I won’t have to deal with these thoughts that keep coming into my head and I’m just. I’ll just keep going and going and it’ll be fine, they’ll just disappear.

How wrong was I?

It got to a point where I’d been seeing the psychologist for a bit through the university and then she had referred me to the psychiatrist.

And then I remember coming to a point, going to a meeting and I said something and the psychiatrist at that point went, well, I’m going to place you under the Mental Health Act.

And I distinctly remember everything about that time.

I reacted quite extreme in a quite extreme way because I felt my autonomy was going to be taken away and that I had lost all sense of control.

So, yeah, they placed me under the act and then I was taken away for five days under the. In New Zealand it was under the compulsory treatment hold for five days and then it was reviewed after that, to which point that’s when I was discharged from it. And I remember the whole five days just sticking with the same narrative and the same goal to every professional that I spoke to in that time. I need to get out of here, I’ve got exams to sit. I need to get out of here. I have exams to sit. That’s what I remember the most, probably being under the act was probably. Actually that whole year had been probably over hang and continuation of what had. I’d first been diagnosed with depression when I was 16 and I remember the year before, watching this teacher because I went to a high school in a regional area in New Zealand. I was like, gosh, this teacher, he. He’s always racing around, he’s always running places. And I was like, wow, he’s so busy. And then he just wasn’t there for a period of five months and. And the following year I had him as my form teacher and I came into that class at form time and I was quite. Just very low. And he said, you okay? And I said, yeah, I’m Fine.

And then at the end of form time, I don’t know what made me do it, but I said, I can’t cope anymore. And he went into complete action and was like, what do we need? We need to get you to see counsellor. We need to do all this. We need to do all that. And at the end of that year, he wrote on my school report, I was a bright young woman with a bright future ahead. Don’t forget to smell the roses. Watch the highs ride the lows and go on with my very best wishes. And. Because he told me that he’d had a breakdown that year before. So what I was seeing with him was him rushing around was hit the start of his breakdown. So for him to share that experience with me to show that he. When at that point I was really low, that you could come back from something, was quite moving, really. And even as an adult, I rang him up maybe like five years ago after I’d healed all the. That earlier part of my story. And I just said, I just wanted you to know that you were one of the people that really meant a lot to me and just, I want you to know that you were really there for me when. When I needed you at 16. And I really appreciate what you did for me and thank you. And this is what I’m doing with my life now.

[00:18:09] Rachel: Wow.

[00:18:10] Hayley: So, yeah, it was a really nice thing.

[00:18:13] Lucy: What was his response?

[00:18:14] Hayley: He was very much like, ah, wow. Sort of like a man of few words, but not. And he was like. First he was like, he’s like, I don’t know what to say. And then he’s like, thank you so much. It’s really nice to hear from former students because often you go on and you wonder what happens to certain students. He said, not all of them, but most of them. And you wonder what happened. So it’s nice to be able to hear from a former student and to hear that you’re doing so well. And so I think that experience sort of maybe contributed to what happened in my early 20s and being under the act, because I think I didn’t solve anything from there. I just continued working really hard.

But it was nice to know that I had someone at that point that could see me and was there for me. Yeah.

[00:19:03] Lucy: Such a small act can change someone’s life or like just the power of believing in someone and showing them that you believe in them. Lucy: Yeah, you can really hear it in your voice as well.

[00:19:19] Rachel: Hayley, you said earlier that you were diagnosed at 16, I think you said depression.

[00:19:23] Hayley: Yeah. That’s right, Rach. So I was diagnosed with depression at 16. I was given some antidepressants at that stage. My mum and dad were quite resistant to the idea of a 16 year old being on medication because mum was worried that it would change my brain chemistry.

And I kind of like, knowing what I know now, I can kind of understand her fear. But I was kind of like, well, it was probably the best course of treatment for me at the time. From what I was presenting with, my motivation came back. I started like interacting with people again and interacting with life and, you know, really wasn’t as help feeling as helpless as I was before going on the medication for the depression.

But different when I was 20 and was under the Mental Health act because they diagnosed and treated me with the medication.

And then as it turned out, I was a psychiatrist. Six months down the track, another psychiatrist was like, no, you don’t fit that.

[00:20:29] Lucy: So what was the diagnosis?

[00:20:31] Hayley: And it was borderline personality disorder.

[00:20:33] Lucy: I don’t know too much about it. Would you be able to just give us a brief?

[00:20:39] Hayley: It’s kind of like in the. It’s awful. It’s an awful way to call it that, I think, because it’s a lot to. It’s a lot to do with mood challenges and having intense feelings around relationships and like having people and losing them and then doing extreme things when relationships, for example, end.

[00:20:57] Rachel: And some people prefer to have it referred to as experiencing unstable emotions.

[00:21:03] Hayley: Yeah.

[00:21:04] Rachel: Or having difficulty in relationships.

[00:21:07] Hayley: Yeah.

[00:21:08] Rachel: But they’re people that tend to reject the diagnostic definition, if you like. And you. And think this describes the experience better.

[00:21:18] Hayley: I just think there’s a lot of stigma around this diagnosis and I just think maybe if it was renamed something other than borderline personality disorder, because that to me is highlighting or indicating that there’s something wrong with that person’s personality. Yeah.

[00:21:34] Lucy: That’s what I feel when I hear that. And not knowing anything about it. It’s like something inherently wrong. Yeah. With your character.

[00:21:43] Hayley: And it’s not the case at all. Yeah.

So.

[00:21:48] Lucy: So you got diagnosed with this, but it was later revealed that, that.

[00:21:51] Hayley: Yeah. And the psychiatrist that I saw six months after the diagnosis was like, well, I can see why they kind of would have needed to. Because under the pressure of the five days to treat and diagnose and treat and they only they’ve taken one part of the. The definition that was like sexual abuse.

And he’s like, there are bits of emotional dysregulation, but not enough to fit that criteria. So he was just Like, I don’t. I don’t believe you do.

[00:22:23] Rachel: When were you told that you had been given that diagnosis?

[00:22:26] Hayley: Because I was going overseas. I was going to live overseas, going to do what these young Kiwis and Aussies do and go and have an OE experience over in the uk. And I wanted to obtain my notes in case I felt something potentially went wrong and that I needed a professional, needed to seek professional help. So I requested my notes through proper channels and then I was reading through them and there were a few things in there that actually made my eyes pop almost.

One of the clinicians was very subjective and they.

They actually ended up pulling her up on. It was. She’d put in there, she’s acting like an angry 3 year old.

And it was like, wow. Yeah.

Like, that is so subjective. And just feeding into that stigma, really, of how people treat people with borderline personality disorder.

So that’s how I found out. I was also a bit taken aback as to why their diagnosis weren’t shared with myself at the time. After being taken off the Mental Health act and with my support people..

[00:23:40] Lucy: I’m just feeling terrified about how people can have so much power over someone else’s story and how that impacts their future and the way other people perceive them. That is frightening.

[00:23:53] Hayley: Yeah. And we had a review meeting after reading these notes. I was like, question the health area. And I was like, I need a meeting to bring this all up because I don’t think it’s right and it needs to change.

And. And that’s what my support people at the time said. Like, if we’d known, we would have treated Hayley a lot differently. We would have known where to get support. We would have, knowing what we were dealing with. And we could have made the experience a whole lot smoother than what it was.

[00:24:21] Rachel: Such a brave thing to do to call your notes. I mean, it shouldn’t feel like it’s being brave. What was it like for you other than discovering the diagnosis?

[00:24:32] Hayley: It just feels like sort of in a way that you’re being ripped right open.

[00:24:36] Rachel: Yep.

[00:24:36] Hayley: And that someone else is making an opinion about you and what your story is and what your life is like and what they think of you. And you kind of like when you’re in an extreme state in terms of, like, illness and things like that. It’s kind of like you. You sort of are struggling with who you are. And to read that, like, it wasn’t positive at all. It was. Yeah. So it was quite hard. It was like being ripped, ripped open and hearing all these opinions of people who they thought I was.

It was quite hard to read the words.

[00:25:10] Rachel: What would you say to people who write in files.

[00:25:16] Hayley: Use open dialogue, do it collaboratively, Nothing with me, without me. I can say this because that’s a professional myself now, in that space, like, I always think, and even before I worked in the mental health space, I worked in the physical health space. But when I was writing notes, it’s such a privilege to actually be part of someone’s experience that I always thought, well, what would I think if this was being read about me? So I always carry that, even to this day, as to, like, how much of an honour it is to be part of someone’s story and to be part of their experience and to just hold that, like, hold space for that and treat it with respect.

[00:26:06] Lucy:  Hayley, was there a moment or a time that you can remember where you started to shift from survival mode and towards something more?

[00:26:13] Hayley: Yeah, Lucy, there was. When I finished my training working in the health space, I started questioning myself, going, oh, I’ve had all these experiences and it really is a privilege to hold space for someone and I need to be sturdy in who I am to be able to hold space for other people.

So I need to start thinking about and making a move to healing my story in order to get to be there, fully 100% present for the people that I will be walking alongside. And then in 2019, I’d been a nurse for a year, I think, and I picked up a book by a New Zealand journalist. His name was Jahan Castanada. It was Jahan Castaneda called this Is Not How It Ends. And Jahan had spoke about his experience of depression and he had tried all sorts of methods in dealing with his depression, talking to his friend, medication, exercise, therapy, all sorts of things.

But none of those things seem to be really hitting the spot in a way. And so he thought, there’s got to be something better than this. So he started. He quit his job and he took six months out to write a book. And he shared stories of people going through extreme experiences to highlight that.

You can rewrite your. Your story doesn’t have to end with that experience. You can rewrite your story and change your narrative to make it bitter and better for you. So one story in particular in there for me was he spoke to a woman who had been sexually abused.

And while I’m acutely aware that her story, that my story, it resonated.

And I was like, well, if she can do it, maybe I can.

And it just Seemed like such a simple concept to me as well, because I was always like, oh, it’s got to be more complex than this. And I think that was part of why I never healed it straight away, because I was like, oh, it’s too complex. I can’t do it. But then the idea of just turning the page and rewriting a narrative was just like, oh, yeah, okay. Yeah, I can do this.

[00:28:31] Lucy: I really like that reframe.

How did you rewrite your story?

[00:28:36] Hayley: I actually was like, well, if I’m going to work with people, I need to heal my stuff, because otherwise I’m sort of like a hypocrite. Like, I’m telling them that they can do it in the physical rehabilitation space, but then I’m not healing what I need to heal. So I sought out a counsellor specialising in sexual abuse, and I spent three years with her. This is quite funny. There was one part in there where she said, I want you to write a letter to little Hayley. And I was like, what? Like, I remember getting really internally angry with her, in a way. And I told her this when we came to the end of our time together. I was like, why does she want me to do that for? That’s ridiculous. That’s stupid. Like, how is talking to little Hayley going to solve anything? Like, this lady doesn’t know what she’s talking about.

But to her credit, like, consistently, it took her about six sessions, but she. She would be like, have you started that letter? Have you started that letter to little Hayley? And eventually, I just got sick of her asking me, so I was like, yes. And I did it. And she’s like, how did that make you feel?

[00:29:51] Lucy: Classic question.

[00:29:53] Rachel: Was it therapeutic?

[00:29:54] Hayley: It was therapeutic, yeah. Because I let go of a lot of that guilt, and I was able to apologize to little Hayley and to tell her that she was actually an okay child. She was doing the best that she could.

Yeah. With what challenges had been set in front of her. Yeah.

[00:30:11] Lucy: What were some of the other things that helped you in your healing?

[00:30:15] Hayley: A lot of Indigenous practices in New Zealand, in the humanities, social work, teaching, other health professions, nursing, are embedded with. Yeah. Indigenous practices and stories. And a big part of the Indigenous Mori is storytelling and concepts. And one of the concepts that helped me with healing was Tūrangawaewae, which means finding a place where you stand, and it’s a connection to something. So you always have your tūrangawaewae, and it means that you’re connected not only to an Indigenous Māori culture, you’re not only connected to yourself or your people or your ancestors, your Whānau. Whānau’s family or ancestors, your whakapapa. Or. It also incorporates, like, attachments to the physical environment, like your river and your mountains and those connections to those spaces that incorporate who you are and your place in the world. Tūrangawaewae. I thought about this practice when I was. I’ve been nursing for about maybe three years, and I was like. Because I was kind of like, do I want to go back teach and back into the teaching space, or do I want to stay in nursing? Like, where am I going to go?

And I had a moment with a patient in the rehabilitation, physical rehabilitation space. She had healed from a stroke. We had her for six weeks while she healed from a stroke. And she said at the end, like, thank you so much for being your bright, bubbly self, coming in every day and positively encouraging me and holding that space for me that I would get better and that hope for me that I would get better and I would be able to walk out of this building. I was a little bit taken back because I was like, I don’t. I don’t. I’m just little old me. I’m not. I didn’t think I’d had that much of an impact.

And then it was after that time, I was like, wow. I think nursing and nursing. I have found my tūrangawaewae. So that sort of settled that thought about where I was going to go career.

It certainly wasn’t to go back to teaching that sort of sealed that. So that’s so cool.

[00:32:26] Lucy: I love that concept. And it’s just making me think about how your teacher in high school gave you that glimmer of hope and support, and then you went on to do it for someone else.

[00:32:37] Rachel: Goes around, comes around.

[00:32:39] Hayley: Yeah. Pay it forward.

[00:32:41] Rachel: Pay it forward, yeah.

How do you think your experiences have shaped the way you try to support and be with others? Now?

[00:32:49] Hayley: I’m definitely aware that because I think if I hadn’t dealt with my experiences and stuff, I probably would. There would have been a potential for me to get over involved and people’s stories and people’s healing. I possibly could have burnt out or anything. Something like that. I’ve learned that my story is not their story.

I’m there to walk alongside, but I’m not there to fix. Like, it’s not my responsibility to fix. Just like it’s no one else’s. It was no one else’s responsibility to fix me. And I remember someone saying to me once, don’t Let their story become your story and vice versa.

Meaning, like, keep. Keep your boundaries as such. But that doesn’t mean that you’re not going to be a great clinician or anything like that. It’s just being mindful that. Yeah. Because you can’t fix otherwise.

Yeah.

[00:33:44] Lucy: It’s a really powerful reminder.

[00:33:47] Hayley: Yeah. Very powerful.

[00:33:53] Rachel: Hayley, if you could speak to someone who feels stuck in the hardest part of their story, what would you want to say to them?

[00:34:01] Hayley: Take a deep breath and turn the page.

And when it feels dark and the world’s against you and you feel lonely, find the light.

Even if it’s just a small light, find it and hold on to it. Hold on to hope that it will get better. Even if it’s like a little candle, just hold onto it. Hold that hope and turn the page.

Yeah.

[00:34:27] Lucy: I’m loving this turn the page concept. Yeah. It’s a real theme. What did you say? I don’t know if you said it in the podcast or before the podcast. It was a shit day, not a shit life?

[00:34:35] Hayley: Yeah. A bad day not a bad life.

[00:34:38] Lucy: Yeah, I like that.

So we’re gonna ask a question that we ask everyone to close the episode. Can you tell us about an act of care, big or small, that’s really stayed with you?

[00:34:50] Hayley: Seven years ago, and I really, like, I had a really difficult situation in my life, and it was quite late at night, and I lived on the outskirts of a regional town, so sort of in a rural area.

I rang a friend of mine, and she was like, right, I’m coming to get you. And she just. She drove 20, 30 minutes to come and get me, took me back to her house, and she stayed up most of the night talking to me. And she’s like, we’re not going to bed until we’ve come up with a solution and a pathway and a way to solve this. She. You know, she’s just. Just. The fact that she stayed up with me so late while I was in, like, distress just felt really big to me. But then when I. When we’ve talked about it, she’s like, oh, it wasn’t that big of a deal. She did another huge thing for me this year, which was. It was just. It was a phone conversation, and I thanked her for it, and she was like, that wasn’t a big deal either.

[00:35:46] Lucy: She’s just. She’s just an angel. Just on the reg

[00:35:49] Rachel: She’s like, whatever. This is just being your friend.

[00:35:53] Hayley: She’s like, don’t make a big deal about it. Come on, Move on. What shoes are we going to buy?

So, yeah, I might have had some really bad experiences or perceived bad experiences, but I wouldn’t have got through those bad experiences if it wasn’t for some of these people.

Like, the trajectory could have been so, so different. So very different. Yeah.

[00:36:14] Lucy: You have an amazing attitude to everything, though. You’re actually such a breath of fresh air speaking to. You are such a joyful person. And you’ve taught me so much about turning the page, finding a place to stand in.

[00:36:30] Rachel: I would say seeing good in others, too.

[00:36:32] Lucy: Yeah, seeing.

[00:36:33] Rachel: Yeah, seeing the good in others, which.

[00:36:36] Lucy: Is hard to do sometimes.

But thank you so much for this delightful conversation, Hayley.

[00:36:48] Rachel: That conversation with Hayley has really stayed with me. Me, you know, I just experienced her with such generosity and this optimistic and really lovely way of seeing the world and people.

[00:37:04] Lucy: I know. Incredible. And it felt really hopeful as well.

[00:37:08] Rachel: I think I’ve always had a hope for myself that I can try and see the good in people and. And see the best in people.

[00:37:16] Hayley: Yeah.

[00:37:17] Rachel: And she’s like my role model.

[00:37:19] Lucy: I’ve been thinking about a couple of themes that have come up throughout the episode. The idea of rewriting your narrative. It’s something that I’ve thought about a lot recently, this concept of rewriting your narrative. And I’m reminded by this quote by this author, Don Miguel Ruiz, and the quote is: Humans are storytellers. It is our nature to make up stories, to interpret everything we perceive. Without awareness we give our personal power to the story, and the story writes itself. With awareness, we recover the control of our story. We see, we are the authors, and if we don’t like our story, we change it.

[00:37:58] Rachel: It really makes me think about how a story isn’t fixed. Like a story is a different story each time you tell it.

You can’t tell the same story twice, really, can you? There’s always going to be changes and shifts and influences of present moment or learnings that change the perspect perspective over time.

[00:38:23] Lucy: I also heard about memories being recreated every time you remember something as well.

[00:38:28] Rachel: Yeah, right.

[00:38:28] Lucy: So I wonder if that plays into the way we think about our past as well. But that idea has made me think about how. How sometimes it can be really hard to keep your sense of self and to not let what other people say about you or what you think other people think about you, to become part of your identity or part of your story.

It reminded me of when I had gone through some big mental health challenges. You know, you sort of come out of that and hear Words about yourself as being unwell or sick. It’s really hard to not let that become how you see yourself.

[00:39:07] Rachel: Gosh, that feels important, Lucy, to really think about, you know, from a professional perspective. I think a lot about the power of professionals or, you know, the power other people can have over people, other. Over others, particularly others in vulnerable or disempowered states.

But I guess what’s really coming up for me is the responsibility of people not to author other people’s stories and not, you know, this power that we have as professionals or as services to define the problem that someone is experiencing and therefore definitely define them.

Yeah, in some ways. And, you know, I think we should really question that.

[00:39:53] Lucy: And I think that’s why I have so much admiration and respect for Hayley. When she shared her story around going to access her notes and then seeing that that didn’t align with how her experiences, but also calling it out and calling a meeting and challenging that and saying, hey, I don’t think this is right.

I just have so much admiration for her.

[00:40:17] Rachel: You know, I don’t know if you know this, but there was, you know, in the royal commission that happened to Victoria into mental health services, one of the biggest themes that came out of that was those that have lived experience of mental health care described the trauma they experienced when they accessed their notes, you know, and that I find that so upsetting, you know, and I’ll just say it again. Accessed their notes.

[00:40:45] Lucy: Yes.

[00:40:46] Rachel: So we refer to them as their notes, but who’s the author? And if they’re their notes, nothing should be in there that they’re not part of authoring. It’s been very powerful for me to hear of Hayley’s experience. And as someone who writes in people’s files often, I will take that with me. Lucy, you said something before that I just want to go back to, if that’s okay. I’m really curious, you know, when you talked about other people defining your story or authoring your story and therefore maybe defining you in a way, how did you reclaim your sense of self or how did you, you know, kind of reclaim your story agaon?

[00:41:26] Lucy: Sort of when I was, like, starting to recover from what I’d experienced, I ended up going overseas to travel. Potentially a bit of a form of escapism. But I realized that when I was overseas, no one knew who I was.

No one knew what I’d been through or any of that kind of thing. So they sort of just took me exactly as I am in that moment, and I didn’t realize it at the time, but that in itself was incredibly healing, and it gave me that little circuit breaker just to reassess and to give me some hope, you know, because I didn’t feel trapped in that identity of being an unwell person. So, yeah, it can be a real gift, I realize just to meet someone exactly where they’re at can be difficult sometimes, but if you can, it’s. It’s an amazing thing just to see someone with fresh eyes.

[00:42:27] Rachel: Kind of think, you know, I’m just curious. You use the word escapism in a bit of a joke, but I think that’s really appropriate, you know, escaping a situation for a period of time.

[00:42:37] Lucy: Yeah.

[00:42:38] Rachel: But also I wonder if it helped other people recalibrate how they saw you as. Well, you know, seeing you as not someone that’s sick, but someone who is traveling the world and, you know, kind of doing things that are courageous.

[00:42:57] Lucy: I don’t know. We don’t know what other people are really thinking about us, do we?

[00:43:01] Rachel: Yeah, but it was.

[00:43:02] Lucy: Yeah.

[00:43:03] Rachel: Interrupting something that was, you know, kind of starting to be influencing you.

[00:43:09] Lucy: Yeah. It’s not something that people necessarily have to say with their words. It may be a way that they’re treating you, and it can be coming from a loving place.

[00:43:19] Rachel: Well, I think mostly.

[00:43:20] Lucy: I think mostly it is coming from a loving place.

[00:43:22] Rachel: Someone you love kind of fall apart a bit and not be managing their life. It’s reasonable to start to, you know, respond to them differently. But it’s hard to get it back on track again, isn’t it? Thanks for sharing that bit about you. And thanks, Hayley.

Discovery College acknowledges that the views shared in this podcast reflect personal experiences and are not a substitute for professional mental health advice. They do not represent the views of Alfred Health.

[00:44:04] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about Discovery College, please head to our website: discovery.college.

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

 Incredible artwork @sharleencu_art

 Shout out to Amplify for welcoming us into their recording studio

EPISODE TRANSCRIPT- Conversations with emotions

[00:00:00] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:13] Rachel: Discovery College acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:31] Siswella: I saw someone and I was like, do I know you? And I said, I’m not trying to pick up on you, but do I know you? And they were like, yes. We’ve actually had this conversation in the last couple of years before you’ve told me that you have amnesia, so I know you have amnesia. Something about that conversation just broke me because I think that was the first time that I realise d that even this stranger that I barely knew knew more about my history than I did. And I had a breakdown in that club. And that’s when I actually truly understood just really how much I had lost.

[00:01:11] Lucy: I’m Lucy.

[00:01:12] Rachel: And I’m Rachel and we’re the hosts of the Extremely Human podcast.

[00:01:16] Lucy: Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria, or moments that feel completely unreal.

[00:01:28] Rachel: On Extremely Human, we hear from people who’ve been there and share what they’ve learnt along the way. Together, we ask, how can we meet the full range of human experience with kindness and compassion?

This conversation with Siswella explores what it was like to lose her memories after intensive ECT and begin again. They reflect on how they found meaning through peer work, the impact of genuine support and the importance of trusting your intuition.

[00:02:11] Lucy: Thank you for joining us, Siswella. It started off as a little bit of a wobbly start to the day when I walked into the studio and everything was unplugged and we didn’t know if we were going to be able to record and. And you came in and I was like, do you have any tech skills? Because we can’t record. And you actually, you saved the day.

[00:02:30] Siswella: Essentially, we figured it out. I definitely liked your escape room analogy because it felt like we figured out clues step by step and we got excited each time and when we figured it out, I did a little dance, so it was actually kind of fun.

[00:02:44] Lucy: Yeah, good way to ease into the pod. So, Siswella, can you tell us a bit about yourself or people who don’t know who you are?

[00:02:53] Siswella: Yeah, I’m Siswella. I use she/ they, pronouns. I’m a consumer peer worker in the public mental health system. I’m someone who has experienced quite a bit of mental ill health and trauma and literally had my life kind of like broken down to nothing. And I rebuilt it, and outside of that, I learned how to be a person again. I like reading. I have five cats.

I love giving random facts, but it can’t be. When you ask me, it just has to be naturally occurring, which is why I suck at trivia.

[00:03:27] Lucy: I say you’re a very eclectic human being.

[00:03:30] Siswella: Yeah, I get that sometimes.

[00:03:33] Lucy: Thank you so much for giving us that little window into who you are. We’re now in season two, so we thought we would choose a bit of a different warm up question just to see how it goes. So the question is, what’s something ordinary that’s felt beautiful to you recently?

[00:03:50] Siswella: So I have five cats.

I have a cat net at the front, so they can go to the front garden, but they can’t leave. So they can explore outside but be safe. And I absolutely love just watching them being in the grass and being shaded under the tree and just doing cat things.

I just find it so beautiful, even though that’s just an ordinary thing.

[00:04:13] Lucy: Do you think cat people are more entranced by their cats than dog people?

[00:04:18] Rachel: Ooh, different.

[00:04:22] Siswella: I think it’s a different. I think it’s equally as intense, but different types.

[00:04:27] Rachel: Yeah, I agree with you. I think I used to be a dog person, but that was only because I’d only ever experienced dogs. And now I’m a cat person. I think because I’ve figured myself out through my relationship with my cat, I’m actually different to who I thought I was a personal therapist.

[00:04:45] Lucy: Yeah.

[00:04:46] Siswella: I had a friend who told me that cats showed them what boundaries meant and, like, help them understand and appreciate boundaries. Because, you know, you can’t touch a cat unless a cat wants you to touch them or pick them up unless they want to be picked up. So understanding boundaries and respecting them. They really got a lot from that experience with having a cat around.

[00:05:09] Rachel: Oh, that’s so true. I like that. Well, welcome to the podcast, Siwella. And you know, we know this is a podcast where we try to talk to people about experiences of extreme states.

Can I ask what that means to you?

[00:05:21] Siswella: It’s meant a lot of things, but for me, I’ve seen things in the binary of extreme happiness or elevation and extreme depression. My experience was that I couldn’t feel things in real time. I realise this now on reflection.

So sometimes I would actually feel a lot of feelings that had hadn’t been processed in the moment. And it would kind of bottleneck, and it would come out kind of like a volcano, and it would feel warm inside me, and it felt like it just needed to come out. And it was also the same for the happiness. At times when I was happy, I just felt like. I feel like I’m getting too excited or feeling too many emotions. And it feels good, but it also feels scary. Like, when. When am I going to come down from this high? And also the fear.

The fear of I’ve gone this high, I’m now scared about the preceding low is going to be. And not knowing or understanding that extreme states actually can be normal. They’re not some mythical thing that we don’t. We can’t help or understand or that I can’t be in control of. Not to say that I want to be in control of my emotions, but to. To understand how to kind of guide my emotions so that I’m not going as high or as low so that I can be safe.

[00:06:44] Rachel: Thank you for sharing that. The idea of the volcano really brings it to life in my mind about what that experience internally is like for you.

[00:06:53] Siswella: It really felt like magma, honestly, in my abdomen, and it just felt like it needed to come out.

[00:07:00] Rachel: Yeah.

[00:07:00] Siswella: Another quick analogy is that my OT will always say to me is that it’s like the Coke bottle, and she was saying that we need to just open the lid just ever so slightly to let the gas out a little bit so that it doesn’t spurt up when you open it completely. And that’s one of the ways that I’ve been using to kind of make sure that I’m feeling emotions regularly and slightly so that I don’t overflow.

[00:07:29] Rachel: That makes a lot of sense, too.

[00:07:30] Lucy: Really cool analogy. I’m interested in what you said, Siswella, because you were. When I think of extreme states, I might associate that with a lack of control. But you were speaking about it’s something that you can get a little bit more control over.

[00:07:45] Siswella: Well, I think my time in trying to get support for my mental health was all about them trying to control my emotions through medication or telling me that my emotions were essentially a diagnosis. So therefore, I interpreted that as being something bad and that it was out of my control to fix.

So when I talk about it being something in control, it’s more about understanding myself and my capacity and my boundaries, because I realise d that a lot of my emotions was my body trying to communicate with me.

Hey, what I did before, I wasn’t actually okay. With, but I didn’t feel safe to feel it in that moment. So it’s coming out on this completely unrelated topic. And at the time, I didn’t understand. I thought my emotions were just this wild, uncontrollable thing that I had, you know, no control over. But really I just had to learn the language of my body. And by doing that, I was able to.

And this is why I didn’t. I didn’t want to say I can control my emotions because I feel like a lot of people when they hear control emotions, they hear shutting down. And that’s not what I mean. I just wanted to guide my emotions or listen to them more so that they. My emotions didn’t come out in big reactionary experiences. And it was more like a conversation with my emotions instead of a shouting match between myself and my emotions.

[00:09:10] Rachel: I really liked what you said about it being normal, you know, because when you hear extreme states, it can feel like there’s something abnormal about it. But everybody has changing states in different circumstances.

[00:09:25] Siswella: Everyone loses people. You know, people die.

And our society says, well, you need to go straight back to work.

And then people are grieving for a couple of years and they think that’s unnatural because we just haven’t kind of given people the space to take their time to grieve or to talk about it more than once. I feel like a lot of society kind of expects you to have a conversation about an emotional situation or an extreme state and. And they hope that that’s the last of it and that’s just not the case. And for people that are continuously feeling big emotions but don’t have an outlet for someone to talk to so that they can understand. I feel like that actually builds on the extreme state and makes people feel worse over time.

[00:10:09] Rachel: I mean, we create norms and kind of about. And rules. Like, I think about grief. How many times do we hear, this is how grief looks like? This is the stages you go through and this is what comes next. And I don’t know, there’s not always everyone’s experience. Is it kind of going through something different?

[00:10:28] Siswella: Yeah, definitely. I mean, and that’s the most, you know, chopped down version. And if you add, you know, cultures and intersectionality and all that stuff, it really.

Everyone’s experience is different. And we all try to say, no, this is the only way. Or the amount of experience that you can have or emotions you can have, I find that very bizarre.

So my experience with extreme states as well, to me, it was a lesson in. I was living a life to conform to others, which actually produced the extreme states because I was angry at myself and I didn’t understand why.

And as soon as I started living life more authentic to my intrinsic values and, yeah, just being more honest about how I wanted to live, then surprisingly, I didn’t have as many extreme states or I just stopped shaming myself. You know, I cry now without being like, why am I crying?

You know, I let myself cry and be like, my body just needed it. And I find that I move on a lot faster because I’m not doubting my experiences as much. I’m just letting them flow naturally.

[00:11:47] Lucy: Siswella, I’m really interested to hear what life was like before things began to change.

[00:11:53] Siswella: Yeah, so growing up, I was very outgoing. I loved dancing. My mum used to say that I would literally dance all the time, like going to shops and I would be dancing down the aisles. I was a very academic student. I was straight A’s, top of the class kind of situation.

I loved socializing. And that was all up until in the VCE years, like year 11 and 12, when my mental health started to deteriorate due to the stress of studying.

[00:12:24] Rachel: Stress of studying is something that most people can relate to at some point, but what was going on for you at that time when the stress started to affect you?

[00:12:33] Siswella: So, as I said, I was a straight A student, but that just came naturally. That’s going to sound really egotistical, but I was able to do things well without studying much. I was able to learn facts and things and recall them quite easily.

But when it came time to VCE years, I think with the exams and the pressure that I put on myself, I never had pressure from my family. They were never, you must get A’s. However, I did get a lot of praise for my. From my family for my academic achievements.

So that’s how I got attention or how I felt. I got positive attention. And so I put that pressure on myself to get the perfect score. And when I felt that I couldn’t achieve that with exams and the actual, actual practice of studying and trying to prepare for a big exam, I crumbled. And I feel that’s when my mental health started to suffer.

[00:13:44] Lucy: And what happened at that point?

[00:13:46] Siswella: I started to look at just random things for me to do. So I decided to become a personal trainer. I wanted to work on a cruise ship. I just, I started floundering with every time that I felt like I was failing because I would only last at a place, you know, three months or maybe a year or something before moving on to the next thing, I just felt like a failure. I was told growing up that I was destined to do great things. I was told I was going to get into Melbourne Uni. I was told I was, you know, just very bright.

And so when I felt like I was not meeting those expectations, I just crumbled. I stopped having interest in doing things.

I started, you know, using substances to escape from the pain, spending money, a lot of money. My credit card situation was insane for a couple of years because that was a way of me regulating, and I didn’t recognize it at the time.

And I actually couldn’t get out of bed one day and my mum would have to drag me to the shower just to try to wake me up. And then they eventually, after a couple of months of me not getting better, diagnosed me with bipolar type 2. And then when that didn’t fit the bill, they diagnosed me with bipolar type 1. And that was around 24.

So I had been dealing with this for quite some time. Going into the mental health system was the start of me getting even sicker.

When I was getting treatment from private psychiatrists, I found that they would just medicate me, which is their role. But when I would say something wasn’t working or I would come back and they would realise  that my, you know, mood hasn’t. Hadn’t stabilized, they would just keep adding more and more and more medications. I had a psychiatrist that was, you know, near the end of my time at mental health, at private Mental health.

I was on 24 medications at one point, and they were changing my medications sometimes weekly. And we know that these medications take a long time to take effect and for the body to kind of equalize. And so I just.

I cringe at thinking about the fact that this person was changing my medication sometimes on a weekly basis, and then seeing my reaction to those medications being that my body was struggling to regulate this new change, and then being like, oh, okay, well, we should just change your medication again. And so my body never really was given an opportunity to figure out how to, you know, deal with all of these things in my body. I honestly felt like I was rattling. Like, you know, my day was dictated by, you know, what medications I needed to take at what times.

I never really knew who I was because I was honestly just reacting to all these medications. I lost who I was and when I was already in pain, reaching out for support, and they essentially gave me so many costumes and masks to put on that I could no longer recognize what I was without at all.

It was extremely distressing. And for doctors to tell me that I just needed to try harder or that it was my fault because of XYZ reasons. It made it a lot harder to want to keep going. And I was extremely suicidal during those years. I was seeking help on a weekly basis, which is a lot of money when you’re not working. Because by this stage I wasn’t working. I did things like TMS and then later on ect. ECT is electroconvulsive therapy. What I say to people is that imagine movies from the 60s where they’ve got an insane asylum and they’re dragging a person away into a room where they’re shocking their brain. That’s what I had. But it’s a much more modern version where they put you to sleep and they induce a seizure and you’re meant to do it on one side only.

But the doctor that I went to was convinced that they had found this new way of doing it called bifrontal.

And so you had one node on the side and one node on the front and it would hit both spheres of the brain. I had 12 sessions. So you do three times a week initially, and I had good results for about six months. So it resets your brain. So if you’re feeling a lot of feelings, it’s kind of like a computer. If your computer’s starting to bug out, you turn it off and you turn it back on again and it fixed itself. That’s what it was like with ect, at least initially. So for six months my mood was better, but that was because I couldn’t remember anything. And then as I started to remember things again or started to kind of connect with reality again, because you’re very sluggish during these times, you can’t remember things. Your short term memory is a little bit short. Once you come back online, everything that you were dealing with before the ECT comes back.

And I started to feel in trouble again. And so they did another round and that worked for three months. And then they decided to just do weekly sessions. And then on top of that they started doing the rounds of 12 and then in between doing weekly sessions. And that went on for 20 months.

And I can never quite remember the number. It’s either 84, 85 or 86. So it’s somewhere in the 80s. But I had that many sessions in 20 months and I lost all my memories.

So I can’t remember my memories from birth to 29 years. All memories or all experiences that I talk about from my younger years are from what people have told me or just what I kind of know about myself because my personality is the same. It’s just that my emotional memories from everything before 29 years has been lost to me. I believe that they’re still there.

I feel like there’s a bridge in my mind that’s been burned down and I just need a way to kind of like rebuild that bridge. But during that time, it was extremely distressing. I knew who my family were, I knew who the current friends in my life were, but I had no emotional connection to them because I didn’t have any of those memories bonding me to them. And that was extremely distressing. I had to literally rebuild my relationship with my parents and my brother and my sister and my friends.

It was really hard trusting that they were telling me reality, which is impossible. Everyone has their own version of reality and events. But I was always wondering, are they telling me a version of a story to protect themselves, to make themselves look better, or to protect me because they don’t want me to feel emotions or any other reason?

That was an extremely tough time. And when I would tell doctors this, they told me that that’s not possible. You cannot lose that much of your memories from this experience or from this procedure. Even though when you sign a consent form before you do it, it literally says that you can get amnesia. But they had also, every time I told the doctor, they had also never met anyone who had had as many ECT sessions in such a short amount of time.

[00:21:12] Lucy: What is, what is the standard amount to have compared to how much you had?

[00:21:16] Siswella: So technically, according to the guidelines, only ever really meant to get 12, and that’s meant to be, you know, last resort. Like every other medication, every other kind of tool that they’ve used hasn’t worked and a life is in extreme danger. Like someone who’s extremely suicidal. Like what I was.

Some small amount of people find it useful, but the majority of people that I’ve talked to have found that it’s ruined parts of their life or has had lasting effects. It took a couple of years for me to recognize the trauma that I’d gone through. Initially I would laugh about it with people like, haha, lost all my memories. Like, how kooky am I? Like I guess in a way to kind of self soothe myself because I felt uncomfortable being around people and I would be like, if I name it, then it, you know, doesn’t have power over me. And then it was like a year or so later I saw someone and I was like, do I know you? I’m so sorry. I’m not. You know, it was at a club, and I said, I’m not trying to pick up on you, but do I know you? And they were like, yes. We’ve actually had this conversation in the last couple years before you’ve told me that you have amnesia. So I know you have amnesia. And something about that conversation just broke me because I think that was the first time that I realise d that even this stranger that I barely knew knew more about my. My history than I did. And I had a breakdown in that. That club. And that’s when I actually truly understood just really how much I had lost. And fortunately, the American group had moved to online because of COVID times. And I was able to. To get support with other people who had experienced ect. And that helped me feel less alone and so much more validated because doctors here were telling me that it was my fault that I had lost my memories. I must have had memory problems before. I must have been abused as a child, which I thought was a really messed up thing to say to someone that doesn’t have memories. Like, they literally implanted that thought in my head, and that’s something I still, like, struggle with sometimes. I’m like, are they right?

But I know I have a very loving family, so that I get really angry that multiple doctors would say that just so casually.

[00:23:36] Lucy: As I’m listening to you speak, I’ve literally had goosebumps, and I feel just like a wave of sadness pouring over me. And we’ve had Bek on the podcast. There was overlap of similarities in your story, so it’s really devastating to hear that it’s not not uncommon. But I’m wondering, was anyone held accountable for your treatment or mistreatment?

[00:23:59] Siswella: No, is the short answer.

The person who prescribed me all those medications and the ect, I think they would say that they got disciplined for it. They were no longer allowed to be a psychiatrist. Their license got suspended. But as of May this year, they technically can.

And I don’t think that’s enough outside of what they did to me. They did this to many other people, and that also included, for other people, sexual assault. And. And as other doctors or the. Is it vcat. The tribunal would say it was an inappropriate relationship with multiple women, and so their license was suspended, but I don’t think that that’s enough.

So I would say no, that they didn’t get disciplined for their mistreatment of me or for the many other people that they hurt during their time in private mental health.

[00:25:04] Rachel: Gosh, that’s such a Hard hitting story, Siswella.

My heart feels really heavy, but I’m so grateful that you can share this for the impact that it has. It’s such an important thing for people to hear.

[00:25:19] Siswella: Well, I’m, I’m grateful that I’m still around.

[00:25:23] Rachel: Yeah.

[00:25:24] Siswella: There was a long time during all this that I didn’t think I would make it past 30.

My mum has literally done CPR on me on two separate occasions, you know, so I’m just very grateful that not only am I here, but I’m actually, I’m thriving. I’m kicking ass.

[00:25:42] Rachel: Yeah.

[00:25:43] Siswella: And I did it in spite of what happened to me, not because of how they tried and failed to heal me. I healed myself.

[00:25:53] Rachel: Yeah. Yeah. Your comments right at the start about having to rebuild your life really kind of are hitting me now.

Hearing what you’ve gone through and that finding your way back before we hear about how you did that. Is it okay if I just ask you something else, which is, you know, what do you think people were assuming about you along in those years, that maybe they got wrong or. And how did that feel for you?

[00:26:22] Siswella: My grandma was also very unwell and was diagnosed bipolar. So when I went and sought treatment and I got the diagnosis of bipolar, I was like, well, this makes sense, you know, family history of it. And I think that’s what doctors saw. They saw, well, you have a family history of bipolar, so you must have it. The label fit for them. Their treatment was based just on, I guess, the family history and what they perceived as my kind of moods going up and down when I was taking medications or when I tried to stand up for myself saying, I don’t want to take this medication.

I also, you know, had eating disorders at this time, so I didn’t want to take medications that made me gain weight. And doctors saw that as me being difficult.

If I tried to advocate for myself, I was being argumentative. And you know, the more that I had reactions to what they were telling me, telling me that me speaking up was, you know, this diagnosis. I then got the diagnosis of borderline personality disorder.

So I had both.

And then, you know, if I tried to speak up for myself again, then they would just saddle me with more medications because they said, well, clearly you’re not, you’re not stable.

And I also just want to quickly say, like, what, what the hell is stable?

Like, why are we aiming for stable? Like, life is about having, you know, emotions. And I feel like psychiatry is about like being devoid of emotions, which is literally like, that’s not life. And I feel like that’s why a lot of people who are on medication say that their life feels like they’re living in the gray or living in static or they feel like a zombie. Because we’re humans and we’re meant to feel emotions, like that’s how we connect to people and to society. But then they give us these medications that literally kind of disconnect us to society. So then we’ll feel isolated, and then our mental health will suffer, and then they give us another medication to deal with that. And that was my experience. You know, I started off, you know, very fierce.

You know, I was very confident in advocating for myself. I thought I knew who I was or I knew who I was, and they made me feel that I didn’t know who I was. And it’s forever changed me.

[00:28:44] Lucy: Was there anyone in your corner while you were going through all that? Because it’s definitely so hard to fight against that kind of power.

[00:28:52] Siswella: Well, definitely my family.

My family, every time I was hospitalized, would visit me every day, particularly my parents, would visit me every day. And I always think about that. I think about the fact that my family did, you know, were able to take me in when I couldn’t work, were able to look after me when I was unwell. A lot of people don’t have that. A lot of people have very dysfunctional families that, you know, can cause people to be mentally unwell or make their mental health worse. And I always think about the fact that I’m just so privileged that I had my family to support, to support me during that time, because without them, I wouldn’t be here.

[00:29:35] Rachel: If someone’s going through something similar, what would you want them to know? Or is there something you’d say to your younger self?

[00:29:42] Siswella: If I could tell my younger self something is trust myself.

You don’t have to know all the answers.

But as long as you listen to your intuition or trust your gut or any other kind of phrase you want to put in there, you’ll be okay.

If you stop listening to yourself and if you stop trusting yourself, then people are going to try to help you in a way that suits their needs or fits their worldview. And that’s never going to work, because we all function differently, we all see the world differently. We all have different values. And I guess that also kind of leads into what I would tell other people. It’s, you are the only. You are going to be the only person that is dealing with what you are dealing with. And if you take medications or use different type of therapies, you are going to be the only one that has to actually go through the process of doing that and have the consequences, good or bad, from going through these things.

So for some people, medication is the answer and that’s it. You know, they find one medication like I’m good now, I feel like that’s supported me and that fits in with their values and their experience with reality and that’s fine. And for some people, they may lean on Chinese herbal medicine or somatic therapy or going out into a forest and screaming really loud until they cry and that regulates them. It just depends. Depends. We all have different things that can heal us. But if you rely on other people to tell you how to get better without, you know, experimenting yourself and without trusting yourself, then you’re never really going to be at peace or never really be your authentic self because you’re, you’re living your life according to other people’s values and judgments.

Lucy: I don’t think I’ve actually heard anyone describe it that well.

[00:31:42] Rachel: It’s amazing. Like I just trying to marry that with that sense that you have of being so self conscious and left questioning you, you thought your ideas or not trusting yourself as a result of what you’ve been through.

Anyway, just thinking about how both can be true.

[00:32:02] Siswella: Yes. And that’s one of the other things, you know, that I had to learn which is, you know, one idea or one point of view, it’s not black and white thinking. That was very hard for me and still is.

You know, both opinions can be true, both perceptions can be true or multiple things can be true at once.

Once you realise  that and can accept, does make life a little bit easier.

Hard to do, but it makes life easier. Yeah.

[00:32:31] Lucy: Siswella, I’ve been thinking about when we first met. I didn’t know your story at that point and I was so shocked to hear everything you’d been through. You’re just such a bright, colorful, you’re so full of life.

And it just made me wonder what were the things that helped you to start to feel like yourself again or maybe in this case like a new self.

[00:32:54] Siswella: The biggest thing that helped me with feeling more like myself is finding the appropriate supports.

I found an OT and she’s amazing and I say this all the time to people, but. But the one thing that I think about is in our first session she said so tell me about yourself. And I listed my medical history because that’s just what I was used to having to give to people who I was going to for support. And it took up the whole hour because by that stage, I had a lot of things, you know, in my medical history. And at the end, she paused and she said, I’m really thankful that you shared that with me, and it’s useful to know, but I was actually just wondering about, like, you.

Like, what do you like to do?

You know, what are your hobbies?

What’s your life like? And I broke down into tears because no one had ever asked me that, you know, in the time that I’d been seeking support.

And it kind of made me realise  that I was living my life defined by my diagnoses. So my OT definitely helped me to feel more like myself again because she approached my situation without judgment, with curiosity, and with patience.

She approached my situation by not focusing on my diagnoses, but by focusing on my life and building my life. Now, you know, with her help, I realise d I wanted to work again. I never thought I was going to make it past 30. And then I thought, well, I’m never going to work again. And then I thought, well, maybe I can work. And I found out about what peer work was, and I wanted to use my knowledge of my lived experience and living experience with mental health and recovery to help others in the same situation. And all of that came from my OT’s very gentle, patient, understanding approach and helping me, you know, rise like a phoenix from the ashes of, you know, what ECT had done to me. And on top of that, you know, I. I got an EMDR counselor and, you know, I connected with her straight away, and the first thing she said to me was, have you ever been tested for autism or adhd? And I had actually been wondering about this myself. Turns out I do have adhd.

Officially, I believe I have autism as well, or I’m autistic as well. I just don’t have the official label. Finding the work that made sense of all the trauma and pain I went through and made it worthwhile, gave it meaning, gave me purpose.

All the work that I did on myself, really intensive work to push through or to process all my trauma and start realizing that it’s okay to live again. You know, I don’t have to be defined by this experience. My whole life, there was a time when all I could talk about with people, when I would socialize, was my mental health, because it was literally the only thing I had going on in my life. I couldn’t work, you know, I would only socialize with people if I could get out of the house. So it was the only topic I had. And then When I had the amnesia, that was the only thing that I could talk about because I couldn’t relate with people with anything, but I could talk about that because people were interested. So it gave me, you know, something to talk about, but I didn’t want that to be the only thing that I would talk about. And so then I worked with ot, and then I finally was able to break away with that being my only talking point. And then I started to work, and I realise d I was really good at what I did. And connecting with people and supporting people helped heal me in ways that I didn’t think possible.

[00:36:56] Lucy: That’s really awesome to hear that lived experience workers sounds like something you connect with really well. But I’m also really interested to hear how that helped you heal as well.

[00:37:07] Siswella: Being able to be there for people and connecting with people in such a human way, giving a chance for someone to talk to me where they knew they weren’t going to be judged, it was healing for me because I didn’t have that experience.

And knowing that I can reduce some of the trauma for these people or just connect.

You know, like I said previously, that part of what I went through was isolation.

So being able to connect with someone who is still experiencing the highs and lows and still figuring it out and knowing that in that moment, I’m helping them not feel so isolated and.

And not feel judged and validate what they’re going through, it feels like what I went through, there was a reason for it. I’m not someone to say that. I would never say that to someone else. Like, you know, everything happens for a reason.

But without amnesia, I wouldn’t be with my partner. And my partner is amazing. Like, my partner really advocates for me to be the silliest, happiest, most authentic version of myself. I can be so wackadoodle in front of him.

[00:38:31] Lucy: That’s a word I haven’t heard in a long time.

[00:38:32] Siswella: And I’m bringing it back.

And he cheers it on. And he just loves me for every part of me, even when I’m down. You know, my family might be like, oh, you’re not doing so good. And he’ll just be like, no, she’s just feeling her feelings like, it’s. It’s good. And he’s just been a champion in my life.

Funnily enough, I wouldn’t have gotten together with him if I didn’t have my OT being like, you can do this. Because I remember when I first met him, I said, I’m. I’m too fresh from my Healing, like, it’s only been a year that I’ve started to get my life together. I can’t possibly be in a relationship. She’s like, why not? I was like, well, because what happens if I stuff it up? She’s like, and what if it doesn’t? What happens if it works out? And it happened to be just the best thing? You know, it turned out we both healed each other, and that was just.

We’ve become stronger independently and together.

I honestly, truly feel that without the amnesia, I would still be in the system because I would be just broken enough to keep believing that I could. That if I just tried hard enough that everything would work out, but because what happened in that situation broke me down so thoroughly, and I was so disappointed and burned by psychiatrists not wanting to help me because I was too complex of a case.

But if I hadn’t been so let down by the. By that experience, I wouldn’t have found the courage to find different solutions being my OT and the emdr.

And that wouldn’t have led me to. Led me to my partner or led me to my rewarding job or given me a chance to have a relationship with my family where they’re not just caring for me. And that we can actually just be a family again.

[00:40:18] Lucy: Makes me very happy to hear that you have done an incredible job of transforming such a dire, shitty situation. And the way you’ve been able to shift your perspective and use it to your advantage and to help others is really, really inspiring.

[00:40:39] Rachel: Wow. What a conversation. I’m really grateful for it. Thank you, Siswella. We’re gonna ask the final question that we ask every guest. Can you tell us about an act of care, either big or small, that’s really stayed with you?

[00:40:55] Siswella: As we’ve been talking today, I’ve had a sensory toy in my hand to prevent me from fidgeting and also just to keep me on track.

And I remember the first time someone gave one of them to me, and I was feeling very overwhelmed, and I was like, oh, I need to go. And they were like, why don’t you go in the hammock? Because I had a hammock there. And they were like, and you can take this little ducky. It was a rubber ducky that you could play with.

And they said, and just kind of swing in there for a bit and just feel your feelings.

And that one day spurred my obsession with understanding senses, sensory modulation, toys, grounding.

That was a huge act of care that they just did to them. It was a casual thing, but for Me. It changed my life.

[00:41:50] Lucy: That’s so beautiful. And I will attest that you are like a sensory queen. You have more sensory toys than anyone.

[00:41:57] Siswella: I know

[00:41:58] Lucy: , and I love them all because they’re so individual and some of them are hilarious. So cute.

[00:42:04] Rachel: That really is the language of our body, isn’t it?

[00:42:06] Siswella: Yes. And you know what?

Every time people see me playing with them, they’re like, what? What are you doing?

And I share it. And they’re like, oh, my God, this is so cool. And I just always think about the fact that we could all use with some sensory toys. You can see you’ve got it out of me now. The passion is coming out my sensory modulation toys. But, yeah, they.

They really help with life.

[00:42:30] Rachel: Sisvella, it’s been such an amazing time to spend with you today.

Just thank you so much. You’ve got a gift with words, and your words I can feel in my body. And your story is inspiring. And anybody that’s experiencing or supporting someone going through something similar would learn a great deal from your experience. So thank you so much.

[00:42:57] Siswella: Thank you so much for having me and for giving me the space to talk about these things. A lot of places want us to speak, but in a very tailored way. And I really appreciate the freedom and the empathy that’s come across today. So thank you both.

[00:43:14] Lucy: Thank you.

[00:43:22] Rachel: Lucy. I think I say this about every guest, but Siwella is extraordinary, and I loved every minute of our conversation with her.

[00:43:30] Lucy: So did I. They’re such a brilliant storyteller as well.

One thing that we didn’t speak about today that Siswella wanted me to talk about, we didn’t mention that Siswella weaned herself off the medication and wanted us to highlight that that was quite dangerous, but it didn’t sound like she had another option.

[00:43:49] Rachel: I mean, I think we also heard from Bek that she had to do that herself back in a few episodes ago.

[00:43:56] Rachel: And I just really question psychiatry around the need to provide better care for people coming off psychiatric drugs. Deprescribing and coming off drugs is, as Siswella said, dangerous and difficult, and people need to be supported. I want to sort of acknowledge that I actually found some of her story very upsetting, particularly the story around the ECT and the, I think, unaccountability.

[00:44:26] Lucy: Yeah.

[00:44:26] Rachel: You know, that there was no accountability for what happened to her, and I found that upsetting. But I found myself thinking a lot about having your history taken from you. Like, having your memories taken is effectively losing your history.

[00:44:42] Lucy: Yeah.

[00:44:42] Rachel: And, you know I We all make sense of ourselves all the time, through our history, through our relationships, through our stories.

And it’s very upsetting that someone’s history was taken from them the way that Siswella’s was. Maybe in future episodes we can think together, Lucy, about talking to some people that might help us understand some of the things that came up in some of the stories we’ve heard.

[00:45:08] Lucy: Yes. Stay tuned.

[00:45:09] Rachel: Stay tuned.

Discovery College acknowledges that the views shared in this podcast reflect personal experiences and are not a substitute for professional mental health advice. They do not represent the views of Alfred Health.

[00:45:36] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about Discovery College, please head to our website, Discovery College.

Katya shares what it’s like to live with an eating disorder, like having two brains: one that loves pasta and ice cream, and one that only wants control. She reflects on how it all began, the role social media played, and why recovery feels like trying to grow a seed in winter—until you find your garden.

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

Shout out to Amplify for welcoming us into their recording studio

EPISODE TRANSCRIPT- A garden to grow in

[00:00:00] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:13] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Katya: You kind of just are searching and searching for this rush of approval and you don’t even realize that you’re never going to get it because its ultimate goal is to kill you. You think, oh, I’ll just get to what’s called an ultimate goal weight. That’s like the lowest I really want to go and I’m going to be so happy if I get there. And you don’t even realize that if you do get there, it’s just going to get lower. And that’s like the really scary realization to have. If I don’t stop, I am going to die.

[00:01:11] Lucy: I’m Lucy.

[00:01:12] Rachel: And I’m Rachel and we’re the hosts of the Extremely Human podcast.

[00:01:16] Lucy: Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria, or moments that feel completely unreal.

[00:01:28] Rachel: On Extremely Human, we hear from people who’ve been there and share what they’ve learnt along the way. Together, we ask, how can we meet the full range of human experience? With kindness and compassion.

[00:01:54] Lucy: Katya shares what it’s like to live with an eating disorder, like having two brains, one that loves pasta and ice cream, and one that only wants control. She reflects on how it all began, the role social media played, and why recovery feels like trying to grow a seed in winter until you find your garden.

[00:02:13] Rachel: I’m so looking forward to this conversation with Katya. I think some of our guests might have heard our last episode with Katya’s mum, Michelle. But this is a bit of a follow up. But it’s also also an exciting moment on its own because Katya’s got a great deal of wisdom to share. So welcome.

[00:02:31] Katya: Thank you. Hello.

[00:02:32] Rachel: Hello. I wonder, Katya, if you can say something about yourself.

[00:02:35] Katya: My name’s Katya. I am 18 years old. Yeah, I’ve been in the Alfred family for a while, so to speak, through my journey with anorexia and afterwards as part of some of my advocacy things that I’ve done. Um, so it’s kind of nice to see that it’s really come full circle.

[00:02:58] Rachel: It really is a full circle.

[00:02:59] Katya: I know, it’s crazy.

[00:03:00] Rachel: How nice.

[00:03:01] Katya: Yeah.

[00:03:02] Lucy: Okay, Katya. Well, the question we ask people on the podcast is a bit of a warm up question.

Have you ever had a disproportionate reaction to anything, sort of when your reaction to a moment hasn’t quite matched the situation?

[00:03:16] Katya: The first thing that sort of comes to mind when I was sort of deep in my eating disorder, pretty much every reaction was disproportionate. But the one that stands out to me is when my mum was trying to get me to eat a punnet of raspberries. That was the goal.

Which is laughable to me now because I can eat a punnet of raspberries in about two minutes flat. But I ended up having such a major meltdown over this punnett of raspberries that I did not go to school for the next week. It was just the biggest meltdown you could ever imagine.

[00:04:00] Lucy: How long was it before you realised that it was a bit of a overreaction to the raspberries?

[00:04:05] Katya: Oh years! It didn’t even occur to me how stupid that was until probably well after I’d recovered.

[00:04:15] Lucy: Yeah, but it can be the smallest things that are the thing that set us off

[00:04:17] Katya: Exactly.

Thing that I don’t know why it was the raspberries that set me off

[00:04:20] Lucy: It was just the raspberries.

Do you look at raspberries the same now?

[00:04:25] Katya: Oh, I. I look at raspberries with fond memories.

[00:04:29] Lucy: So you spoke a little bit about having an eating disorder. Can you tell us what that experience was like for you?

[00:04:37] Katya: Yeah, of course. Well, I was diagnosed with my eating disorder in. What was it? October of 2020.

So that was sort of lockdown. Had just started easing up by that point a little bit, I think.

And I sort of really struggled with my anorexia for a couple of years after that. You know, in and out of hospital through that cycle. I eventually made the firm decision to commit to recovery by the end of 2022.

And yeah, and as I said, it’s really come full circle from being treated at CYMHS to then starting to work with some of those people like you.

[00:05:32] Lucy: That’s amazing.

[00:05:34] Rachel: Katya, I hope it’s okay. I say this, but I think for someone who’s not lived the experience of an eating disorder or anorexia here, it’s incredibly hard to understand what that’s like. Have you got any way of helping us understand that experience from the inside?

[00:05:51] Katya: It’s definitely very difficult to try to explain to people that haven’t gone through it, especially when you try to explain that it’s not at all about vanity or how you look for me. And obviously this isn’t the case for everybody. But my eating disorder was a way to maintain some sort of control in my life in a world that was very much out of control and chaotic. So by being able to control every single aspect of my intake, my weight measurements, you know, etc. I was able to sort of have that complete control over myself, even though, you know, like it wasn’t actually me controlling those behaviors. You know, it gives you a false sense of security in yourself, I guess, and you’re able to be distracted from any outside stresses or troubles that you might be having because you just can become completely consumed with your eating disorder. In a way, it’s very much self sabotage and it is a form of self harm or trying to punish yourself in some way, which, yeah, is so hard for people to understand when they haven’t gone through that need to sort of hurt yourself in that kind of way.

[00:07:21] Lucy: You mentioned before that it wasn’t really you that was sort of gaining control.

[00:07:26] Katya: Yeah.

[00:07:27] Lucy: What do you mean by that?

[00:07:29] Katya: I personally sort of describe my experience with anorexia as having two brains in a sense.

So I have my healthy brain, which is, you know, that’s me. Those are the things that I like. You know, I love pasta and I love chocolate and ice cream and everything in a food perspective. And then I also have my eating disorder brain, which, depending on the state of my mental health, if I’m really sort of struggling with my eating, that sort of fuels that side of my brain to grow bigger and bigger and bigger until this part that’s me is really not there at all. And that’s why when you’re so deep in an eating disorder, it is so hard to try and get that.

It’s like a seed that needs to grow in the middle of winter. You know, it’s almost impossible because there’s no sunlight. There’s no way for that seed to sort of grow back. But when there’s a whole garden, it’s much easier to stomp out those weeds. You know, in a really weird analogy.

[00:08:43] Lucy: That’s an incredible analogy.

[00:08:45] Katya: Yes.

[00:08:45] Lucy: The visualization I’m getting, it’s.

[00:08:47] Katya: Yeah. So it just depends. Like, because I’m in a healthy mindset right now, it’s very easy for me to control any negative thoughts I have around. You know, maybe I should go weigh myself today or maybe I shouldn’t eat this because my healthy brain is so prevalent and so strong. But if I’m really struggling, it’s really hard for me to Ignore those urges because they become just second nature.

[00:09:15] Rachel: If you can think back to, you know, pre October 2020, do you remember what some of your early thoughts or feelings were around that time?

[00:09:26] Katya: Oh, definitely. I would say that sort of the first few months of 2020 was when there were lots of trends going around on social media about getting fit during lockdown and losing weight. And as a 13 year old girl who was obviously struggling with friendships like most teenage girls do, at some point that seemed like a way that people might like me more if I lost some weight or I looked different.

So it’s kind of started just as a let’s get fit, but turned sort of spiraled quite quickly and turned from just running, you know, you know, once a day to sort of practice for cross country or whatever, turned into watching what I’m eating and making sure not to have too much of this and working out multiple times a day to try and lose more weight. That became sort of the sole focus rather than getting stronger and getting healthier. So then by October, you know, I was really restricting my intake and I was obviously very unhappy. And that’s sort of when mum was like, all right, this is not cool.

[00:10:49] Lucy: You mentioned that the lockdowns and Covid were a bit of a catalyst into the beginning of your eating disorder.

Was there any other contributing factors that sort of shaped the way you saw yourself and your self image, your body, your relationship with food?

[00:11:07] Katya: Definitely. At the time I had recently shaved my head for cancer. I donated the hair and raised money for that. But you know, when you’re a girl in year seven, year eight at high school, that does not really fly with your peers and you know, they start making fun of you and saying you look like a boy or calling you an egg and a couple of times it’s like, oh yeah, whatever. But when everybody starts to do it, even your friends, because it’s like funny, then it, it kind of becomes in the back of your mind just like a voice telling you, you know, like, you should look different. And then also, you know, teenage boys are not really the most pleasant creatures to be around either.

And so an aspect of eating disorders can also be wanting to sort of remove some of that femininity that you have.

Because obviously when you start to lose weight, you, you know, lose your curves, you lose your boobs. And I think that took a long time for me to sort of realize that that’s also part of what I was doing to myself. And then, you know, you’ve got my brother who is autistic and that was sort of a big influence on my childhood as well. And you could talk so many different angles to what might contribute to the development of an eating disorder. But I’d say those were, especially at the time, the main things that I was sort of going through.

[00:12:46] Lucy: And what part did social media play?

[00:12:49] Katya: Yes, social media played a big role as well. As I said, when you’re an impressionable girl and you’re looking through social media all the time, because what more is there to do in Covid? And, you know, you see these young women who are working out to get fit, and it’s coming from a completely innocent perspective. You know, there were a lot of people who did really use lockdown to work on themselves and who they are as a person. But for me, it was kind of, again, in my subconscious a way of thinking that if I did this, then I would be liked. If I did this, I would look different and people would stop making fun of me, essentially. But then my interactions with social media also changed as I developed more and more into my eating disorder. You can find very overtly harmful eating disorder content all over the web. You know, you can find on pretty much any social media app just communities of people that encourage each other to eat less and lose weight. And that completely just spiraled my eating disorder out of control. Because not only do you have people who look thinner than you, which eating disorders can often be a competition of who can look the sickest, who can be the sickest, but you also have those same people encouraging you to do more, to eat less, to be thinner.

[00:14:34] Lucy: So it’s like your idols are encouraging this in you.

[00:14:37] Katya: Exactly. Yeah. So when that unhealthy brain keeps taking over and taking over, it uses this content online to just keep growing and, like, taking over your mind and your body until, yeah, it’s just. You’re just a shell of yourself, basically.

And social media was a big, big contributor in that, you know, and especially when you have that really unhealthy side, there’s no. There’s no voice in you saying, stop, don’t do this. You know, that’s a lot of people’s argument, is if you find social media unhelpful, just get off social media. But you don’t want to. Right. So if there was any sort of recognition that I shouldn’t be doing this, I wouldn’t have done it. But that voice just isn’t there anymore.

[00:15:28] Lucy: You know, especially, like, not even just the fact that you don’t have that voice telling you this isn’t healthy. But the Algorithms are giving you more and more. Whereas, you know, in previous years, like, you know, 20 years ago, that didn’t exist. It’s like, here, you like this thing we’ll give you. Shove it down your throat.

[00:15:46] Katya: Yeah.

[00:15:54] Rachel: Were there moments that you kind of realized how the depth of its effect on your life?

[00:16:00] Katya: I would say that a lot of my moments of realization didn’t come until after I had recovered. You just can’t see at all any of the damage that you’re doing. You know, people, the doctors are telling you you’re hurting your heart, this is not good for you. Like, and you’re hooked up to a heart monitor, and you still don’t think anything’s wrong. You just cannot see anything to do with what’s wrong with how you’re thinking or even how you’re feeling.

You know, you’re tired all the time. I could only go to school for three periods a day max, before I’d have to call it quits and come home because I just could not work. My.

My body and my brain just weren’t working anymore. But, yeah, I think.

And that goes the same for my habits on social media or my eating disorder rituals. I wasn’t able to recognize just how unhealthy they were until after I had recovered and really worked on myself.

[00:17:10] Rachel: Gosh, I’m really curious then, if it was so hard to recognize the impact it was having, where did the turning point come from? Like, why did you choose recovery?

[00:17:21] Katya: I honestly could not tell you. This is probably one of the hardest things to explain to people. For a lot of people, they have to continuously choose recovery every single day. You know, it’s. It’s very slow slope upwards. But for me, and I remember telling you this, I remember just saying it was like a switch.

It just clicked one morning, and then I was done. I remember that I was done. So then I came in the next day to CYMHS, and it’s like, yeah, I’m eating this, this, this, this, this, this, this. Instead of, you know, I had. I had my set meal plans, and I eat the same thing every day. And then the next time I came in, it’s just done.

I cannot explain that to anybody. I have no idea why or how. There is a lot of work that’s done in the subconscious. You know, I was journaling a little bit more, and, you know, I’d created a little board of 100 reasons why I wanted to recover. Not that the. The overarching thought was, not that I’m gonna do this, but just so it’s there, you know, Mum, Mum wants me to do it, so I’ll get her off my back.

But I think that sort of slowly just turns the cogs until one morning you wake up and you’re like, no, I’m not having my bloody All-Bran for breakfast anymore. I want some yogurt, I want some berries, you know, some granola. And then I think what’s harder than, for me personally than picking recovery is choosing continuously. Every single time something gets tough or something goes wrong is continuing to choose that and to stay healthy rather than just spiraling down. Because it’s easy to just go up and down, up and down, up and down, but to stay up is what’s really challenging.

[00:19:15] Rachel: Is that something you still have to negotiate often or is it something that is less of a choice?

[00:19:23] Katya: I would say it depends on sort of what’s going on in my life. If I’m having a particularly bad week, then it’s very similar to an alcoholic, you know, if you’re having a really bad week, it’s difficult not to pick up a drink and just have one drink, you know, because one drink turns into two and two turns into four, etc. It’s the same, same thing. I can’t just. I’m too tired. I’m just gonna not have dinner, right? Because it might seem pretty innocent, you know, you just don’t want dinner or want something really small for dinner.

But that thought turns into, oh, you’re doing so good by not having dinner. Why don’t you just skip breakfast this morning? And then it’s skipping lunch as well and that just turns into another thing. And then you’re like, hold up, what am I doing?

[00:20:16] Rachel: Right

[00:20:17] Katya: So it’s definitely still always in the back of my mind. And I think little unhealthy brain will always be somewhere in the back of my head for a long, long time. But for the most part, it’s harder for that small part of my brain to take over. You know, even if it tries really, really hard. I might have a really bad week of eating and then I’m like, you know, I’m so bored of this, I just want some food again. So that the healthy brain is always able to just take over again, even if it’s a bad week or something like that.

[00:20:52] Lucy: You know, like we have a critical voice and then a. A voice of self compassion at times.

[00:20:58] Katya: Yeah.

[00:20:59] Lucy: Would the eating disorder fall into the critical voice or is it like a third voice? Is it completely different or is it the same?

[00:21:05] Katya: I would say it’s Completely different. Like if. If you screw up, like, say you accidentally eat an extra thing for the day, then it turns quite critical. Or, you know, if you don’t lose as much weight as your planning to, then it becomes quite critical. You know, you need to try harder, you need to do better. You’re not doing good enough. But it can also be, you know, very kind. And, you know, it’s a celebration if you do hit that marker, but then that very quickly goes away to, all right, the next thing let’s. You’ve hit this weight, now let’s go to the next one because. And then all of a sudden, that weight doesn’t really seem like good enough anymore anymore. So it’s very complicated. It seems you kind of just are searching and searching for this rush of approval, and you don’t even realize that you’re never going to get it because its ultimate goal is to kill you. Right?

You think, oh, I’ll just get to. This is my.

This is my. What’s called an ultimate goal weight. That’s like the lowest. I really want to go, and I’m going to be so happy if I get there.

And you don’t even realize that if you do get there, it’s just gonna get lower. You know, you’re not gonna stop until you’re dead. And that’s like the really, just really scary realization to have. It’s like, gosh, like, if I don’t stop, I am going to die.

And it’s. Yeah, that’s just. It’s so frightening. You know.

[00:22:52] Rachel: Katya, we. You know, we did have a little bit of a chat with your mum last episode, so we learned a lot from her about her experience. But from your point of view, how did anorexia affect your relationships, you know, with friends, family, maybe even with yourself?

[00:23:07] Katya: I would say really impacted pretty much all of my relationships. Obviously, my relationship with my mum became really strained.

We were fighting all the time.

Every single conversation we had was about meals or the eating disorder or something else to do with me being unwell, you know, so it became just a chore almost to have to talk to her because obviously I don’t want to hear any of it. Right? Like, that’s just. I’m not interested in hearing about this.

So I never wanted to talk to her. And that was a really big change because we were always, you know, so close. And we are again now that sort of everything has been repaired with time.

[00:23:59] Rachel: Did you think it would be. Did you think you would get back to where you are now?

[00:24:02] Katya: I don’t think so. No. It was for so long. We were so strained. Yeah, it was a really difficult time for both of us, I’d say. But then also, you know, it was hard losing all of my friends because it’s really, really difficult to be friends with someone when you can see just how badly they’re hurting themselves and you can’t do anything about it. That’s. I think the thing for a lot of people is they grow a lot of resentment towards you, which is completely understandable, because if you really just want to help that person because, you know, they’re a good friend, but they will not accept any help and continue to get worse, that becomes too much for a lot of people, and, you know, rightfully so. Like. And when I’m in hospital most of the time anyway, I don’t see them much. I don’t talk to them much.

It. It just. Everybody gets really distant because, yeah, there’s just not much of an opportunity to talk. And it becomes too hard for them to talk to me because just whenever somebody would talk to me, you could kind of just see in their eyes that they were hurting by talking to me because, you know, it is really distressing to see somebody who is so unwell with themselves and in that state. It’s really, really tricky.

So, yeah, I did end up losing, you know, most of my friends, and a lot of those relationships I never got back. So that is. Has always been a really big, you know, regret for me is that I lost so many friends and I made new ones. And, you know, everything is spinet dandy now, but, you know, it is really. And it’s just makes the eating disorder so much worse because at that point, you’ve just got nothing left to lose, right? Like, yeah, I haven’t got a great relationship with my mom. I’ve got no friends anymore. So what’s the point, right? Just fuels that voice even more. And I think that also contributes to the fact that I had no friends because the eating disorder wants to push everybody away in order to close you off more, keep you just for itself. Right.

[00:26:30] Lucy: It’s so sad, though, because you said that you wanted to change the way you look so that more people would like you and have more friends and then…

[00:26:37] Katya: It’s a bit of a paradox.

Nobody looks at somebody who is very overtly struggling with anorexia and goes, yeah, I want to be friends. I want to be friends with that girl. She looks really good. Like, no, I looked dead.

I was so miserable. You know, I was always tired at that Point, you don’t even know. You can’t tell that you look so dead because. Or that you see in a mirror. You don’t even look at how your eyes are just so tired. You just look, where can I lose some more weight? You know, it’s very. It. It seems so vain when I think about it. But like, if you, if you’re an. Coming from an outside perspective and you think this person is just so obsessed with losing weight, it just seems like a vanity competition. But it. It’s like a shell of something else that is going on for that person.

[00:27:35] Rachel: It’s often misunderstood as, yeah, a quest around vanity, isn’t it? Yeah, it’s actually the. In my opinion, I feel like it’s often quite the opposite.

[00:27:44] Katya: It’s the complete opposite. Like, you know, your subconscious knows just how awful you look. But that’s the point, you know, but.

[00:27:54] Rachel: It’s more of a rejection of self, really.

[00:27:57] Katya: Yeah, yeah.

[00:27:58] Lucy: Is there anything else that you wish people understood about eating disorders that they often don’t?

[00:28:05] Katya: I think obviously eating disorders are very complex in nature.

One of the big things that stands out to me is that anorexia is not the only eating disorder. I think a lot of people use the terms interchangeably, but, you know, that’s not true. And a person can also have many different types of eating disorders, even all at once, you know, so especially when I was in lockdown and, you know, I was more than struggling with just anorexia, you know, I’d have binging episodes and it definitely was not a linear sort of trend downwards. A lot of people sort of overlook other eating disorders because, you know, they’re not as serious. And then I’d also say sort of the essence around not wanting help is a big thing. You know, it feels really disheartening for people, especially like your loved ones, when you keep constantly refusing help. As I’ve said, the way that I like to explain it is that there’s two different parts in my brain. And even though I’m really just an awful person on the outside, it’s really not me who’s saying these awful things or refusing the help. You know, like, if that little part of my healthy brain could talk, it would say, no, please, I really need some help.

But, you know, people are so quick to blame the individual and get mad at that person, which is fair enough because there’s not really anybody else that you can blame because all of these things are coming from them, but it’s not them, you know. So I think, like, yeah, a lot of people, you know, they’d get so frustrated with me and they’d be telling me all these things, but I was not able to comprehend what they were saying because it was like talking to a wall. It literally was just talking to a wall. You could be pleading, crying at me, please.

And I would have a straight face, you know, like, I was a really terrible person at times because just it was not. It was in one ear, out the other, you know, so it’s important to remember that that person isn’t really there.

Just because they sound like and talk like and often will act like their normal self, that does not mean that they’re in control at all.

Especially when it comes to food conversations and conversations around, you know, more difficult subjects. That’s when you. If you bring up food or say, eat this, there will just be a rage of fire coming out. And, you know, my mum would be like, all right, we’re not going to have this conversation because eating disorder’s out. And that would just make me even more mad because I don’t recognize that there’s an eating disorder component. I’d be like, it’s not an eating disorder. This is me talking. This is Katya. And she’d be like, nope, nope, nope. And I. Oh, it would just make me so mad because I couldn’t understand the concept that that wasn’t me talking.

It’s really, really complicated.

[00:31:38] Lucy: No, it almost sounds like it’s a completely different entity.

[00:31:41] Katya: Yeah.

That’s the way I like to describe it, is that it’s like a parasite that’s just taken over your brain. You don’t, but you’re not able to comprehend the fact that that’s not you.

[00:31:55] Lucy: Yeah.

[00:31:56] Katya: But then other people also forget that that’s not you.

[00:31:59] Lucy: Right.

[00:32:00] Katya: But then you just seem like a real dick.

[00:32:02] Lucy: Yeah.

[00:32:03] Katya: Okay.

[00:32:03] Lucy: Did you have a name for the eating disorder?

[00:32:07] Katya: I didn’t.

[00:32:08] Lucy: Okay.

[00:32:08] Katya: But I know a lot of people do like to name it. I would just say the eating disorder voice or the eating disorder. Or if, you know, I was really in depth. It was me. It was Katya.

[00:32:19] Lucy: Yeah.

[00:32:20] Katya: I do know some people do like to describe it.

[00:32:23] Lucy: Yeah.

[00:32:24] Katya: That the eating disorder is part of them.

But, yeah, for me, it’s especially coming from a place of recovery. It’s much easier to explain it. Like a little. Little bug in your brain.

[00:32:36] Lucy: Yeah. Yeah.

[00:32:37] Katya: Just telling you what to do.

[00:32:39] Rachel: Earlier on, you talked a lot about how important it was to choose recovery and that sometimes you have to choose it. Often I wonder if that leaves listeners thinking that the eating disorder Is also a choice.

[00:32:52] Katya: Oh, I really hate that misconception.

[00:32:55] Rachel: Me too.

[00:32:56] Katya: That you are choosing to have an eating disorder. Yeah, definitely not. An eating disorder is not a choice. Like I said, you. It might seem like a choice in your brain as somebody with an eating disorder, because the unhealthy side of your brain has just taken over.

So obviously you’re choosing to continue to, like, restrict and lose weight. But that’s not really a choice.

It just means that that sort of unhealthy part of your brain is just completely taken over. Whereas recovery, it’s easy to just let go. You know, if you’re climbing up a wall with a rope and it’s getting really, really tiring, it’s easier just to let go than it is to keep climbing up. But it’s also like there’s some sort of force pulling you down. So it’s easy to just go, all right, just take me. All right. Than it is to go, nope, nope, nope. I’m not listening to you. The initial stages of getting an eating disorder, sometimes that can be a choice, Especially when you’re in a relapse or sort of just experiencing some symptoms of an eating disorder. I would say that some of those could be a choice. You know, I do have a choice, especially when I do have my healthy brain still really in charge. If I’m not doing well, sometimes I can be like, all right. No, like, I. I want to sort of give in to this a little bit because I’m able to make the distinction still that I’m wanting to sabotage myself in a way. But then you could look at it from the perspective of a. Well, is that really your choice, or is that actually just your eating disorder brain taking over again? So it’s. It’s really like, at the end of the day, no, it’s not a choice.

[00:35:05] Rachel: Thank you for those comments. It’s an issue I hear a lot about.

[00:35:10] Rachel: You know, because recovery is a choice, isn’t it?

[00:35:12] Katya: Right.

[00:35:13] Rachel: You can’t. You have to choose to fight and keep climbing up the rope.

[00:35:18] Katya: Yeah. And I think especially for parents as well, It’s. It’s sometimes really hard to understand. There’s.

That it’s not a choice.

[00:35:25] Lucy: Speaking to you today, you’ve obviously learned so much from your experiences, but is there things in particular that you’ve learned from the eating disorder that you’d like to pass on to people who might be struggling with it?

[00:35:40] Katya: I think one of the main takeaways is that I really wish that I hadn’t got it in my head when I was sort of fresh to the whole eating disorder thing, is that hospital is not some sort of grand prize. I think that a lot of young girls, especially with the rise of social media, you’ll see somebody posting online with an NG tube up their nose and, you know, in hospital and think that they are sicker than you because they’ve reached that achievement and you haven’t done that yet, but it just makes you more miserable, honestly, like, you just. You feel worse. It doesn’t help. In fact, it makes you worse. Not in the sense that you get sicker in the way that you hope you will, but you just feel so hopeless and miserable and you get this really sort of weird connection of relationships with people who are also struggling, which seems like a really nice thing to have people who understand how you feel. But in the long run, it’s just like a way for the eating disorder to stay attached to you. The main takeaway is that hospital is not this grand thing that it’s made up to be, especially online. You know, you’re treated like just any other patient who’s coming through the doors. Like it’s not really all what it’s hyped up to be.

[00:37:25] Lucy: What is the thinking behind ending up in hospital as the. The finish line, as the goal to be attained? Lucy: What’s the thinking behind?

[00:37:35] Katya: I guess the thinking is that if you are sick enough to need inpatient treatment, then you are sicker than somebody who doesn’t need inpatient treatment. Coming from a competition perspective, which is just untrue, you can be super sick from any sort of perspective, however you want to look at it, and still not be hospitalised. You know, that’s just a fact.

Even though it does seem like you really just want to compete with other people, it’s just. It just makes everything so much worse. You lose friends because not only do you start competing with people who also have anorexia, you just start looking down the street and if you notice somebody who might be thinner than you, you then start competing with this random person on the street and it’s like, what are you. What are you doing? You know, when I think back in hindsight, I’m like, gosh, what, what was I thinking? I look down the street and go, man, I want to. I want to be skinnier than that random person walking down there. The main takeaway that I have that I always like to remind myself and I also like to, you know, tell people whenever they’re going through it, is that you always, always, always should choose recovery because the best day you could have when you’re struggling with an eating disorder is still a hundred times worse than the worst day you could have without one. That’s sort of my little mantra that I tell myself whenever I’m going through sort of a bit of a rough patch or something. And that’s the biggest takeaway I’ve gotten.

[00:39:22] Lucy: It really puts it into perspective.

[00:39:24] Katya: 100%. Reflection. I wish I’d done that sooner, actually. Reflecting, even if it’s without any intention to recover, a reflection is really, really helpful. And then just a little side note, it does help the subconscious, just personal experience. But if you’re not interested in recovery, then that’s fine too. You just reflect. And that just helps sort of put everything into perspective a little bit, I think. And I think I would not have had as difficult of a journey if somebody had told me that sooner. Once you. I think once you start thinking about the root causes of everything, that really helps to, yeah. Frame what is going on for you and then helps sort of kick start that recovery process is what I found to be really helpful for me.

[00:40:21] Rachel: Katya, thank you so much for your wisdom and beautiful sharing with us today.

[00:40:29] Katya: Thank you.

[00:40:30] Rachel: We like to finish each episode by thinking about what it means to sit with distress. Well, I wonder if there’s anything you can share about your experiences of that either being receiving support at difficult times or of giving it. You know, what do you think is important when someone needs some support?

[00:40:50] Katya: I think probably one of the most important things is beforehand, like just knowing how to support somebody in a stressful situation or having sort of maybe cues about how to respond. For example, some people. Some people just like having somebody in the room while they’re sort of going through it. But that will make me more angry if somebody’s just sitting there, because my brain interprets that as they don’t care, which is totally different to how somebody else might think and then again, somebody else. So I think learning how to deal with that particular person’s preferences is really important beforehand. But then during, just remembering that even though seeing somebody else being distressed can be very distressing on you, two distressed people doesn’t solve anything. It just creates more distress. So staying calm, cool, collected is key to resolving the situation nicely. I’d say.

[00:42:07] Rachel: Oh, gee, that’s again, great advice. I really. I really like what you’ve said. We’re all so different, aren’t we? And as much as possible, try and understand what someone needs.

[00:42:18] Lucy: Katya, firstly, I cannot believe that you are 18. Like the knowledge and wisdom that pours out of you. This conversation has really been a gift because it’s a topic that many of us don’t understand. We don’t even know how to begin to understand. So your story really has been very eye opening into what the experience of eating disorders can be.

[00:42:42] Katya: Thank you.

[00:42:49] Lucy: What an episode with Katya.

[00:42:51] Rachel: She’s spectacular.

[00:42:52] Lucy: She is. She’s a special human.

[00:42:54] Rachel: Yeah.

[00:42:54] Lucy: I learned so much.

[00:42:56] Rachel: Really?

[00:42:56] Lucy: Yes. And I’m still thinking about it, but I actually have a lot of questions for you as well because I know that you’ve worked closely with people with eating disorders for many years and you have your own expertise

[00:43:06] Rachel: Of course, and, you know, really happy to give my ideas. But, you know, I want to say just at the start, Katya teaches. And people like Katya teach me all the time.

[00:43:18] Lucy: Yes.

[00:43:19] Rachel: And I’m not an insider. Well, I’m an insider in a different way, I guess. But I just want to pay acknowledgement, appropriate acknowledgement to those that have really taught me over the years.

[00:43:33] Lucy: The thing that stood out to me when I was hearing Katya’s story is that you could hear that she was doing a few, like, many things in the background to work on herself. But then, you know, she mentioned this light bulb moment where she just sort of felt like things were getting better.

[00:43:48] Rachel: Yeah.

[00:43:49] Lucy: And to me, that felt almost like a miracle. Is that a common experience for people to just all of a sudden just feel like they’re, you know, a little bit clearer?

[00:43:58] Rachel: It is something I hear often, which is that there’s either words like felt like a switch was flicked or a light bulb moment, or, you know, something drastically changed and it felt like it changed overnight.

[00:44:13] Lucy: Okay.

[00:44:14] Rachel: And so it can feel like a bit of a miracle for those around the person too. Like, I think Katya mentioned coming in the next day and telling me how different everything was from the day before. And it did feel like that. But everything that led up to that day has meant that switch is flicked. I’d be keen to hear what Katya says about this, but I don’t think it’s true that you just wake up one day and it’s different. I think it only happens because of what’s come before that allows that to change. And you know, oftentimes until that moment, it’s the people around the person that are kind of, really, kind of trying to cause change.

And then something might happen where they suddenly taking control of their own journey and, you know, kind of finding their way towards recovery for their own reasons.

[00:45:08] Lucy: Yeah.

[00:45:09] Rachel: Instead of other people’s. I really want to pay respect to all she and her family and people around her did in the lead up to that moment in time and how great it was for her to suddenly feel like things could be different.

[00:45:25] Lucy: Thank you so much for explaining that to me, Rach. Another thing that I was thinking about after this conversation with Katya, she mentioned quite a few times, it’s not about vanity. And that was a strong message. It was more about having control in a world that felt really chaotic. I wonder if you had any thoughts on what Katya spoke about.

[00:45:45] Rachel: Thanks for sharing that about the vanity because it’s such an off a common misconception, and I think it’s an understandable misconception too, about how eating disorders are often spoken about. There’s a big association to body image pressures and you know, kind of the impact of ideal, you know, extreme and unachievable imagery getting given to people about how we should look. And for sure that’s really unhealthy for people and in itself that’s a problem.

But when we start to think about eating disorders, there’s something different that’s happening for these people. I would say most teenagers have disturbed body image or at least concerned about their bodies.

And a lot of women and men, adults hold a level of body dissatisfaction as well. So we’re all kind of suffering from the toxic body image pressures that are around us. But we all don’t develop serious eating disorders. So there’s something different about what’s happening for someone than not liking how they look.

[00:46:55] Lucy: So what is the broader issue?

[00:46:57] Rachel: Well, it’s complex, I think, and it’s not usually one thing. But if I can really, really grossly summarize, I would say it’s a rejection of self.

[00:47:08] Lucy: Okay.

[00:47:08] Rachel: You know, it’s an experience that’s profoundly related to how someone feels about who they are, how they feel in the world, and whether they feel accepted or acceptable. And I think this whole issue of certainty and uncertainties and control is a really strong element of it.

[00:47:24] Lucy: What do you mean by that?

[00:47:26] Rachel: Human life is highly uncertain and complex. And, you know, we’re not all. We’re not born with skills to manage that level of uncertainty.

And, you know, we develop that over time and over the course of our lives.

And some of us can learn that more quickly than others. But sitting in uncertainty and kind of coping with a world and a life that doesn’t feel in control is. Is very threatening.

You know, it can make the world feel quite unsafe or it can make you feel unable to be in it very easily. So I Think it’s. There’s lots of things that have taught us or trained us out of sitting with uncertainty. You know, social media, we’ve kind of a world of instant. I think we’re kind of in a world that’s getting increasingly uncertain, and we’re evolving in a way that’s making us less able to tolerate it. And when you’re a younger person, in a way, you know, they.

Everything can feel very uncertain. And then you throw Covid and lockdowns and disconnection into the mix, and they’re kind of really vulnerabilities for developing an eating disorder.

[00:48:47] Lucy: I was wondering if there’s a certain period in people’s lives that you see eating disorders emerge more frequently.

[00:48:55] Rachel: You know, eating disorders are commonly seen in teenagers. You know, that’s often the time where we see them start and have the most common time of onset. But this isn’t a teenage problem. These eating problems can happen across the life cycle, particularly in life stages that create a lot of shifting identities.

[00:49:17] Lucy: Okay.

[00:49:17] Rachel: Relationships or roles in their family or in their community or changed body experiences. So for women, you know, things like childbirth are great times of. Of vulnerability. Or post, you know, in early childhood, infancy, when they’re raising little babies and their relationship with their bodies really changing and under strain.

[00:49:41] Lucy: Yes.

[00:49:42] Rachel: And then again later in life, things like menopause and life stage changes also change a woman’s body. And so they’re really peak times of vulnerability. But for men and women, any time of high levels of uncertainty or change or distress can cause vulnerability around developing an eating problem.

[00:50:05] Lucy: That makes so much sense. I did have one quote from Katya that I wanted to read out again, just because I thought it was so beautiful. And I keep thinking about it.

[00:50:14] Lucy: She was talking about the struggle of recovering from an eating disorder and how hard that can be. And she said it’s like a seed that needs to grow in the middle of winter. It’s almost impossible because there’s no sunlight. There’s no way for the seed to sort of grow back. But when there’s a whole garden, it’s much easier to stomp out those weeds.

How beautiful is that?

What are some more ways that you see that sort of help people to stomp out more of those weeds and to grow the garden?

[00:50:41] Rachel: Such a great metaphor. What do I think about when I think about a healthy garden? You know, what are the components? Like, I think about the sunshine that Katya talked about is, you know, is this sense of being really kind of valuing of yourself and feeling like you can shine.

[00:50:56] Lucy: Yeah. Yes.

[00:50:58] Rachel: And, you know, I think about things like feeling accepted and acceptable and, you know, kind of trust, having autonomy and agency in. In the world and feeling positive, positive about the future, feeling like there’s a sense of belonging and connection with others.

For me, that makes a healthy garden.

[00:51:23] Lucy: Yeah.

[00:51:23] Rachel: And weeds would struggle to grow in those. In those conditions.

[00:51:27] Lucy: But how do you get to the healthy garden when you’re in such a place of isolation? How do you make that first step towards those things?

[00:51:38] Rachel: Well, I think, Katya, you’re talking about journaling and the hundred reasons to recover with some of it good examples of building the garden.

But, you know, it’s also around recognizing that oftentimes someone with anorexia, particularly, you know, everyone around them, wants some things to be different, but they maybe don’t. And, you know, the.

That keeps everyone stuck, you know, and so it’s probably not going to be where the change comes is from suddenly waking up one day and saying, I don’t want this anymore.

It’s about kind of bringing in things that can strengthen the person, the healthy part of the person, and kind of, you know, helping them feel stronger than that eating disorder part of themselves. And I think Katya talked a little bit about the healthy self.

[00:52:31] Lucy: Yeah, the healthy brain.

[00:52:32] Rachel: The healthy brain. And then there’s the eating disorder brain. And I think you can either get really kind of focused on the eating disorder, really trying to target change there, or you can focus on the healthy self and trying to build up the healthy part of that person’s self or sense of self and strengthen it so that it can be bigger and better than the eating disorder part of themselves.

[00:52:59] Lucy: Yeah.

[00:52:59] Rachel: Does that make sense?

[00:53:00] Lucy: Yeah, that makes a lot of sense.

[00:53:01] Rachel: So it’s like giving hope and having belief and trust and being able to promote autonomy and healthy choices and communities, control and giving skills to sit and deal with life’s uncertainties. You know, these are the kind of things that I think about when I think about building healthy self. Sometimes the eating disorder becomes so all consuming for not only the person experiencing it, but for those that love them, that the whole experience of life becomes through that. You know, conversations are always about that everything else gets pushed out and how do you not do that when this is happening to someone you love or happening to you? So it’s completely understandable. But sometimes it’s about a deliberate and intentional attempt to try and shift that and kind of move the focus away from the problem and help create space for growth of the healthy person. And Katya and her story spectacular and thanks for sharing it with the world.

discovery college acknowledges that the views shared in this podcast reflect personal experiences and are not a substitute for professional mental health advice. They do not represent the views of Alfred Health.

[00:54:35] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website discovery.college.

Check out the Kaboose website and app here

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

Shout out to Amplify for welcoming us into their recording studio

EPISODE TRANSCRIPT- Supporting our kids

[00:00:00] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:13] Rachel: Discovery College acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty at the time.

[00:00:32] Michelle: You’re trying to do anything you can to keep your child safe. You’re calling whoever you can to help and hoping that that’s met with the right intentions. And certainly from a parent’s perspective, I think you’re always doing the best you can and looking for those good intentions. But it’s not always met with the right approach. I think, and especially when you’re that house that have needed help more than once or twice, you sort of start to think, oh, no, am I seen as that parent that needs help again? So I think you do question yourself a bit.

[00:01:17] Lucy: I’m Lucy.

[00:01:18] Rachel: And I’m Rachel and we’re the hosts of the Extremely Human podcast.

[00:01:22] Lucy: Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria or moments that feel completely unreal.

[00:01:34] Rachel: On Extremely Human, we hear from people who’ve been there and share what they’ve learnt along the way. Together, we ask, how can we meet the full range of human experience with kindness and compassion?

In this episode, Michelle shares her journey supporting two young people through extreme distress. From hospital stays to first responder call outs. She talks about the challenges with emergency services and the healthcare system, the power of just being there for someone instead of trying to fix them, and why she created Kaboose, a community app for neurodivergent people.

[00:02:20] Rachel: I’m actually really excited to be talking to our guest today, Michelle.

[00:02:24] Michelle: Hi, Rachel. Nicke to be here. Thank you for having me.

[00:02:28] Rachel: Do you feel like you can say.

[00:02:30] Michelle: A little bit about yourself to start us off?

[00:02:32] Michelle: My name is Michelle and I am.

[00:02:34] Michelle: The founder of an app called Kaboose. And I’m also the parent of two young people who have had a journey through various mental distresses. I think today I’ll be sharing a lot about their story, but also my story as a parent going through that multiple years in a row.

[00:02:54] Rachel: We like to start with each guest by inviting you to tell us a story about maybe your own or someone else’s disproportionate reaction to something.

[00:03:06] Michelle: I had a pretty extreme ish reaction to a situation around Medicare. What was happening was that my daughter was in hospital at the time with anorexia, and we needed to claim something. With Medicare, and we had to check in on something. And I tried to go into the app, and all of a sudden her profile wasn’t there, and I couldn’t get into what I needed to get into. And I was already feeling quite anxious. Because of the hospital situation, under pressure with, you know, trying to do work and manage appointments and the hospital. And I was like, this can’t be happening. And when I called, then, of course, you have to allow about an hour.

[00:03:53] Michelle: Or more to get through or more.

[00:03:57] Lucy: And did you have frustrating music playing?

[00:03:59] Michelle: Yes, that’s right. Which was making me even more anxious.

And then when I got through, I was told, yeah, Your daughter is 16, so you can’t see that anymore. Sorry. And I’m like, like, hang on. First of all, she’s 16. She’s not an adult. But apparently, yes, you are an adult in the eyes of the law.

And I said, but she’s in the hospital. How are we going to manage this when she actually can’t be here to authorize me to access it?

So eventually, after going through layers of, you know, supervisors, they did give me access.

But the irony afterwards with all of this is that even my daughter can’t access her own profile until she’s 18. So between 16 and 18, nobody can access the profile. So there’s some flaw in the system. But you can imagine, as a parent trying to get something resolved that seemingly should have been straightforward, just triggered.

I can almost still feel the anxiety today.

[00:05:05] Lucy: So frustrating, though, it’s just like the prime example of how some systems make a shit thing worse.

[00:05:11] Michelle: Yeah, yeah, yeah.

[00:05:13] Rachel: It’s really made me think about the question because, you know, often the stories we hear around that don’t feel disproportionate, they feel really valid responses to really frustrating or dehumanizing experiences that we all have.

[00:05:32] Lucy: I was speaking to someone today, and I was like, we were talking about how the theme of the podcast is extreme states, but she was like, maybe it’s more that the world is actually extreme and that the response is actually quite a normal response to an extreme world that we’re living in.

[00:05:48] Michelle: That’s an interesting take, I think, especially.

Especially these days when there’s so much pressure for so many things.

[00:05:55] Rachel: Which leads us into the hopes of this podcast, really. We hope through these conversations that we’ll be able to explore different human experiences of distress.

Some people refer to it as extreme states, and some in other ways. How does the word extreme states fit for you?

[00:06:15] Michelle: I think it fits fine and I think talking about extreme states or people in distress, I think it just validates the situation a lot more. So I think it can be very isolating for many young people, parents, carers, when you’re going through an extreme state or feeling distressed in some way and I think talking about it just sheds some light on it and hopefully provides strategies to people who need them.

[00:06:55] Lucy: Michelle, you’ve mentioned that you’re the parent of two young people who went through their own mental health distress. You’re the first person that we’ve spoken to who’s the parent of someone who’s gone through something like that. Would you mind talking about what that experience was like for you or for your children as well?

[00:07:13] Michelle: So, yes, you’re right, Luce. I’ve got two young people and my son is now 21, but he started going through some very serious mental health challenges when he went into secondary school. So he was a teenager and at first these things were happening that, yeah, were just. We couldn’t really understand what was going on. And this is in the context of Nick having autism and ADHD. There was a lot of behavioural things going on and, you know, school was sending him home and. And then we had like a very serious issue where, you know, police were called to the shopping center and, you know, he was having, yeah, quite an extreme meltdown. And from my perspective, it was just, yeah, I was just really terrified, really about what was going on. And of course then when you have emergency services involved, you know, trying to get them to understand the context in which this is happening is also really, really tricky. But that particular one, I guess, sticks with me because, you know, there were, there were so many people around and then, you know, we were outside the shopping center, you know, in the car park and you’ve got multiple emergency services there. And then I had to call friends to come and get my daughter to., you know, take her, because we just didn’t know, like, what was going to happen in the next few hours.

Over the coming years, there were multiple sort of situations where he was very distressed over bullying and social isolation.

And, you know, we ended up having police at the house. And there was one particular time where I thought, oh, no, they’re going to, you know, they’re going to end up hurting him because they’re worried for their safety. But he was, you know, he was just so distressed and at the time. Like, everyone was just, I think, very confused about what was, what was going on.

[00:09:28] Rachel: We’ve often been curious about the experience of those responding to those situations, particularly frontline police or paramedics. We’ve heard various different things in these discussions.

Are there things that you think police or ambulance or those first community responders did well for you or for Nick?

[00:09:54] Michelle: I think we were very lucky on, for the most part, we had very. I guess, very considered responses. But then there were times when, you know, first responders just didn’t understand the situation and I think that has been one of our biggest challenges, to be honest, is when, particularly when there’s an outburst of some sort for a young person, autistic, neurodivergent young person, it’s not always met with the right approach. Like, particularly, police would try and go in too hard and that would escalate things even more. And so that happened on multiple occasions.

And of course, I know we always have to remember that they’re trying to keep the community and people safe. But there’s a balance there, I think, in knowing the young person and also listening to the family and, you know, knowing what needs to kind of happen, rather than going with their sort of, you know, process the rule, rulebook, I guess, of, you know, do this first. Then this, then this. Sometimes they have to think outside the square.

[00:11:11] Rachel: I don’t know if you can say some more about what it means to go too hard, you know, in what Nick might have experienced. And then you also said we had really considered responses.

What does that mean? Like, what does a considered response look like?

[00:11:27] Michelle: Yeah, so they’re going too hard. Police have a, their training is to use a very strong voice. And I think for my son, that would always trigger a negative response, particularly at that age. And so if there’s already a heightened state or a heightened kind of situation. Going in with a tone like that, just. It was like pouring fuel onto the fire.

And already, we’ve already got to a point where we’ve escalated, where we need police involvement. And so that kind of tone just doesn’t go well with some young people. And then we would have other police who would take the time to understand what was going on, would try and offer, like, distraction techniques, like, hey, why don’t you come and sit in the front here and let’s have a look. Do you want to see the line nights? You know, really sort of trying to. Use distraction techniques to calm the situation, because .. once the situation has been diffused, even a little, you can usually then maneuver into an ambulance or maneuver into, you know, mum’s car or whatever. Whereas once you’ve started, you know, going down a pathway of being too aggressive, it’s very hard to come back from that. We’ve seen situations with Nick where, you know, he would then run away and. Then the danger of that is huge because, you know, running into traffic or, you know, leaving hospital and police are sort of on a hunt for, you know, someone who’s run away and that becomes very dangerous.

[00:13:19] Rachel: I can’t imagine what it must feel like to have to reach out to police when you have a very distressed child in your care. How was that for you as a mum and how are you responded to as a help seeker?

[00:13:34] Michelle: That’s an interesting question.

[00:13:37] Michelle: At the time, you’re trying to do anything you can to keep your child safe. You’re calling whoever you can to help and hoping that that’s met with the right intentions. And certainly from a parent’s perspective, I think you’re always doing the best you can and looking for those good intentions, but it’s not always met with the right approach, I think. And especially when you’re that house that have needed help more than once or twice, you sort of start to think, oh no, am I seen as that parent that needs help again? So I think you do question yourself a bit sometimes in those situations they’ve got their little book and they’re like, you know, and what’s your name, and what’s your date of birth and. You almost feel like you’re being interrogated and yet like that sort of anxiety. As a parent when all you want to do is just like, get to the hospital, let’s get this situation calmed down, let’s get the help we need. But instead you’re kind of there answering sort of questions about what’s going on.

[00:14:43] Lucy: Is there something that you would ask from first responders to have in their mind when they’re responding to people in distress?

[00:14:50] Michelle: I think first responders need to be able to differentiate between what is a real criminal intent situation versus a family in crisis or a mental health challenge. And I know that’s a very fine line and, you know, and we don’t want to put first responders at risk in any way. But I think if you’re first responder, you, you have a fair idea. I think if you’re going to a situation that’s a criminal situation versus a 13 year old who’s in, in distress. And even, you know, later as a you know, as an adult. One of the things we ended up doing sometime after our first and second and third involvement with first Responders is actually having a profile like, you know, I insisted that they all had my Son’s details and our address and a bit of a bio because I think, you know, that ultimately, whilst we were well known, not for all the right reasons, but we were well known, it allowed at least some knowledge of the situation before they got there. Because I was, you know, incredibly worried that they would attend and something terrible would happen because they wouldn’t realize that we weren’t in a hostage situation or something like that.

[00:16:25] Rachel: What would you want them to know or understand that you feel they don’t at the moment?

[00:16:29] Michelle: I think with, particularly with neurodivergence and autistic young people just having an understanding that what they say in a crisis or in the heat of the moment isn’t who they are. And that often it’s the distress talking, not the child or the young person talking. It’s very easy, I think, for police to say they’ve been assaulted by a young person when it’s just a reaction to that, you know, that sort of situation. And it’s not to say it’s right or to say that, you know, that the child shouldn’t have pushed. Or, you know, what have you, but. It’s just trying to put it into some context that, you know, as a parent, how many times have you had to contain, you know, even a neurotypical toddler? Often you’re seeing toddler behaviour in teenagers. And it’s just for them to recognise that that is the case.

[00:17:45] Rachel: We’ve often, Lucy and I have reflected on what it means for police to be called in these situations. Is there something that you think you wish could happen instead?

[00:17:59] Michelle: It wasn’t for a while that I realized that actually if you call the ambulance, because that’s what you need is some medical support to get your young person to hospital or something to help calm the situation down. That the police are often sent first and. And it took me a long time to realize that that was what was happening. That actually if you call for an ambulance because, you know, you need to get some help, that the police come first. And I don’t think we have the resources to have mental health clinicians come first. But sometimes that’s probably what, what you really need, you know, is somebody more, sort of specialized to the situation.

[00:18:48] Rachel: How about emergency departments and you know, kind of being met in an emergency? I mean, they’re also environments that are tough to be in and there’s a lot of hyper or hyper arousal or lots of heightened emotions.

[00:19:06] Michelle: Yeah.

[00:19:07] Rachel: For people in emergency situations. I wonder what your experience as a parent carer has been?

[00:19:14] Michelle: I’ve had too many of those. In fact, I was just saying that last year was the first year in eight years that I haven’t been to emergency with one of my children.

They’re, they’re not conducive to calming anything down really. And it’s not, oh gosh, it’s not, it’s not the medical carers or the nurses that are the problem at all. It’s the whole system.

Michelle: I think there’s too many lights. Quite often, well, depending on how you go in, you’re kind of waiting. They’re over subscribed many times and it always seems like the crisis has happened. At the end of the day and you’re waiting, you might be in the ambulance, in a corridor and then of course, you know, like it’s heightening the young person. And unfortunately for Nick, you know, that meant, you know, being restrained multiple times which then continues, you know, the problem. And then you’ve got a guard at the door and it’s pretty awful.

And then, you know, you’re kind of tired as well as the parent. So you’ve been on, you know, for hours and hours. You’ve got, you, you’ve managed to get through the first responders and you’ve managed to get the ambulance. You’ve managed to get to hospital. If things haven’t settled down by then, you know, there’s restraints and you know, it’s terrifying. You’re standing outside a door and all of a sudden this child who’s mentally distressed over something that’s happened is now in some padded room without anything.

When you’re a parent and you’re really worried and you’re scared about what’s happening or you think you might not get through the night at home, so many times, you know, I’ve slept, you know, on a beanbag or sat outside the door, or you’re desperate to do anything to kind of just get somebody else to help watch, basically. So sometimes you feel like you have no choice. The longer it goes on, I think you end up making those choices though. You end up going, okay, well how can I contain this situation at home? Maybe you do become more confident at managing the distress at home. And so you learn different things from being in the system a bit. And certainly after it probably took quite s few years, like with my son. I didn’t realize, I think, the complexities of mental distress and you know, and I didn’t fully appreciate the challenges with the system and I thought they were there to help. And so I just thought that if we went to hospital that they would help. And actually it wasn’t always the best choice. And I think so often that because the system is so stretched and when they realize that you’re not going to like do something that minute or that hour, that you can go home. And so you’ve just been there for hours and you know. Yes, things have then calmed down because there’s been some medication on boarded and this, you know, you’ve waited around for half the evening and night and into the morning and then it’s like, okay, well you can go home now. And it’s like, okay, well we’ll see you tomorrow then. Because, you know, that was our pattern for some time is we’d go home. We might be back in a few days.

[00:22:56] Lucy: Sounds so stressful and exhausting.

[00:23:00] Michelle: Yeah. It’s not until you come the other did that you realize maybe how exhausted you’ve been.

[00:23:04] Lucy: Yeah. Okay.

[00:23:06] Rachel: I think this is off the topic a little bit, but I wonder if you could design an urgent care facility for someone experiencing an extreme state mental health distress, what would it look like?

[00:23:20] Michelle: What I’d love is if there, if there was a safe place that was resourced by mental health professionals that was sensory friendly even for those who are not neurodivergent. Just that low lighting, you know, some calm spaces.

[00:23:38] Rachel: I’m imagining something that, you know, feels a bit more like home, like environment where, yes, young people or people of any age can sit in a comfortable, sensory safe place that they’ve, you know, comforted by those they. That care for them, care about them.

[00:23:58] Michelle: Yes. And that there’s a coach there to help the parent too, because as a parent, you’re a. You might be sleep deprived, you’re already stressed, you already know there’s a lot going on for the young person. You’re already trying to, you know, advocate for services. You’re already trying to fend off issues online or at school and even when you know what you could or should be doing, like in a crisis, it’s quite hard when you’re the one in the crisis to employ those skills. And so having, you know, having someone who knows you know, that’s just a little bit removed from it, I think would help.

[00:24:46] Rachel: I think it’d be good to hear a bit about similarities and differences of Katya’s Journey.

[00:24:53] Michelle: Yeah. So when Katya first was admitted, I.

[00:24:57] Michelle: Really thought, oh, there’s a medical issue here that we’re going to hospital and, you know, we’re being admitted because her heart is not functioning as it should be. And I had, in hindsight, no appreciation for what was going on in terms of her mental health. And it wasn’t until we were in the hospital and I was there that, you know, after one of the meals, the eating disorder voice bubbled up and, you know, there was, yeah, a very big outburst on the ward. And I was like, like, what is going on? I don’t understand this. There was significant mental distress going on. And that the difference was that she had been internalizing it probably compared to Nick, who had been externalizing it a lot of the time.

[00:25:46] Rachel: If you can describe the experience as a parent carer, of someone who’s internalizing their distress in a way, like anorexia, like, what is that experience like for you? Or was. Sorry, what was that experience like for you?

[00:26:02] Michelle: Yeah, as a parent, it’s very confusing. I think, when you first when you first come across anorexia, like, you really don’t know the level of distress that’s actually going on. And I think that’s quite hard as a parent because you, on the surface, you know, you’re seeing someone who may have it together or may just be very high achieving, you know, sociable, interested in lots of things. And so on the surface, everything seems like it, you know, it’s fine. And I think as a parent, when you realize it’s not fine, the anxiety then is like, gosh, how did I miss this? Like, not just skipping one meal, but clearly skipping multiple meals. And I think depending on how close you are with the young person, it’s like feeling a bit betrayed that you didn’t know that this was going on. And, you know, like, why weren’t we talking about this, you know, before it got to that point?

[00:27:12] Lucy: It sounds like it’s been very well disguised. Like you mentioned high achiever and, like, interested in a lot of things.

[00:27:19] Michelle: Well, I think what I’ve learned is that. That eating disorders are very clever. And, you know, they know how to trick and disguise. And it’s learning, I think, about the condition, you know, we’d spent so long learning about neurodivergence and the signs and. The triggers and identifying, you know, when things might be getting tricky. Whereas eating disorders, I think, a whole new level.

[00:27:46] Rachel: I’m curious about how you experience being met by services with two children expressing distress in such different ways. And as a parent of those two young people.

[00:28:00] Michelle: T a very interesting observation. We had first responders multiple times too with my daughter and her eating disorder, they were much, I want to say much better at managing that situation because they could see the internal distress and the fragility of her. Whereas when you’re seeing someone who is mentally distressed, who’s physically able, I think they were different approaches, actually.

[00:28:30] Rachel: Okay.

[00:28:31] Michelle: And I also wonder about gender, to be honest. My son was, you know, a large young man and had been on medication. So was, you know, physically bigger at that time and so stronger. And, you know, so it’s interesting then maybe how our unconscious bias plays into that, you know, for first responders.

[00:28:55] Rachel: I often hear stories about how eating people with eating disorders responded to, not necessarily by the health system, but by the broader community. And, you know, this, you know, kind of not always helpful ways of understanding those that distress and what’s happening for them.

What are your thoughts about that?

[00:29:17] Michelle: There’s a lot of people who misunderstand eating disorders. I hadn’t seen a lot of information about it. So, you know, when we first, you know, started to deal with, you know, the medical profession, I was like, oh no, it’s not anorexia. I don’t think that’s right, you know. And, you know, because you are presented with, here’s the, you know, here’s the book about it and you should read about it. And it’s like, oh, wow, this sounds really terrifying. And you know, this is really extreme. No, that’s not us.

And so I can also see how the community would think that if you haven’t had exposure to it. And so this is where I think helping schools and helping even GPs and other medical professions, psychologists, understand it more. I remember we did go down the path of having a psychologist and whilst you know, lovely, two actually had no idea of the extent of what was about to play out, I look back and I wonder if they had even had a little bit of extra training or a little bit of extra knowledge, like, what would have happened, you know, could we have prevented the journey, even just lessened the severity of our journey a little?

[00:30:48] Lucy: What would be something you’d want parents who are caring for their children, who are going through some rough times. Is there a message you’d like to pass on at all?

[00:30:58] Michelle: I think that you can’t fix it. Even though you want to. I think that’s one message. And the other is that to try and like sit with the distress or sit with the fear rather than trying to again, fix it. Because I think that’s one of the hardest things to do, is just to go, okay, it’s going to be okay, or you hope that it’s going to be okay, but just to be able to sit with that.

One of the techniques that I learned through both experiences, actually, is not to try and counter how they’re feeling or fix how they’re feeling, but to just acknowledge how they’re feeling. And I think it’s one of the most powerful things I think that you can do is just, you know, just to validate the feeling and even just to be able to say, particularly with neurodivergent individuals, is, I can see you’re feeling like this. Is that right? Sometimes you have to go the step further with neurodivergent young people, whereas, you know, with Katya, just a bit, even being able to empathize with how she’s feeling. Not that you can ever put yourself into someone else’s mental health or mental state. I think just being able to acknowledge that was one of the biggest things.

[00:32:22] Rachel: Why do you think it’s so powerful, that technique?

[00:32:25] Michelle: Yeah, I think it’s just validating the feelings and also being seen, especially because. I think many times when you’re in an emotional state that you’re, you’re feeling unseen and people aren’t seeing how distressed you really are.

[00:32:44] Rachel: I can imagine how hard it is not to want to fix it.

[00:32:48] Michelle: Yeah.

[00:32:49] Rachel: Can take it away.

[00:32:51] Michelle: Yeah.

[00:32:51] Rachel: But why do you think that doesn’t work?

[00:32:55] Michelle: I don’t think it’s very empowering.

[00:32:57] Michelle: I think that ultimately, what I’ve always said about lots of aspects of parenting is I want both my children to have the tools in their toolkit to do what they need to do, Whether it’s supporting their mental health or, you know, making good choices in. In life, I think you have to let them make some choice in order to learn that.

And so I think if you’re always fixing or you’re always trying to solve, then you’re not really giving them the skills they need to solve it. Because, let’s face it, you know, a youth mental health issue might become an adult mental health issue one day, or you know, maybe they’ll be dealing with family one day that has, you know, their own mental health challenges and giving them the tools, I think ultimately is the best way.

[00:33:51] Rachel: I often wonder, and I. I’m not sure about this, but I often wonder if it also kind of creates this sense of. It’s unbearable.

[00:34:01] Michelle: Yes. You know, it’s kind of unbearable for me. Yes.

[00:34:05] Rachel: So it must. It’s even more unbearable for you, you know, so it kind of makes the ability to experience it harder, maybe.

[00:34:16] Michelle: I think so.

[00:34:17] Rachel: I was wondering if you wanted to share something about a time when you feel like you’ve responded to distress well or you’ve noticed other people responding to yours or other people’s distress well, there.

[00:34:33] Michelle: Was one person in Stepping Stones back when we had our long stint with Nick there that just responded beautifully to all manner of distress in him and was able also to work with the family in a really constructive way.

[00:34:54] Lucy: Could you say a little bit more about what that looked like?

[00:34:57] Michelle: I think just really human centered, like, you know, she would take time to work out what does he like to do and what does he like to talk about?

And would talk about that. The first thing would be is, you know, what have you been watching on TV or you know, how’s your lizard? And do you want to bring your lizard in for a visit? So very much leaning into him as a human.

[00:35:22] Lucy: And I’m sure Nick will remember those interactions.

[00:35:25] Michelle: If I asked him, do you remember? He would say, oh, can we go for a visit?

[00:35:29] Lucy: That’s beautiful.

[00:35:31] Michelle: Yeah.

[00:35:32] Lucy: Can I ask what Katya and Nick are up to now?

[00:35:36] Michelle: Yes. So both are doing very well. So that is very good. And I think for Nick, having connection to community and having employment has really changed his whole outlook and I think that really helped. And it was one of the biggest things that I think helped us turn a corner was getting him re engaged with community and employment. And yeah, the same for Katya doing very well and finished year 12 now and ready to start that next chapter without the stress of high school, which is very distressing, I think, for our young people.

[00:36:21] Rachel: Michelle, do you think you can tell us about Kaboose?

[00:36:23] Michelle: I guess throughout these years I’ve always been thinking about what I could do to help and support neurodivergent individuals, to connect with others, because that was what was driving a lot of our mental distress. You know, Nick was feeling lonely, socially isolated, was bullied online, was tricked online to meeting people who weren’t who they said a whole manner of things. And so I decided that I would start a community app called Kaboose. And Kaboose is a place for neurodivergent individuals of all ages to come and find other neurodivergent individuals around the same interests, age location. We also have support groups online, so talking about different things like rejection, sensitivity, which is a really big topic for neurodivergent individuals. And we have peer mentoring and we also have a job board on the app as well.

[00:37:33] Rachel: So it’s so cool. Yeah.

[00:37:35] Rachel: Congratulations.

[00:37:36] Rachel: How did you come up with the name?

[00:37:37] Michelle: So Kaboose is a. Well, Kaboose with a C is the last carriage in a train where the crew meet. And so it seemed fitting to change it to a K because the C wasn’t. You weren’t able to register that. And being, you know, a train, I know it’s a bit stereotypical because not every neurodivergent person likes trains, but where the crew meet seemed to be fitting.

[00:38:06] Lucy: I love that.

[00:38:07] Rachel: And where do people find Kaboose? How do people connect with it? Yeah.

[00:38:13] Michelle: So you can download it from the App Store, Google Play, or head over to our website Kaboose app. Kaboose with a K app. And there’s a download button and it’ll be in the show notes too.

[00:38:25] Rachel: Have you heard feedback from people about how Kaboose has helped them or what difference it’s made?

[00:38:32] Michelle: Yeah. It’s really lovely when you hear from the community, whether it’s a parent.

[00:38:38] Michelle: We have under 18s in a separate part of the app. And so often I’ll get emails from parents all over the world saying, this is so great. I’m so glad my son, my daughter, you know, is connecting. They’re talking more than they have in, you know, however many months or years. So that’s really lovely. And then on the flip side, you know, community, you know, adults who’ve come and found other adults and continue to show up to our groups or message me in the app, because I’m in the app as well. So you can come in and say hi.

[00:39:11] Rachel: Thank you for sharing your wisdom with us.

[00:39:14] Lucy: You’re such an amazing advocate and you’ve been so generous in sharing your story and thank your children as well for letting us hear their stories because I think a lot of people are going to benefit from hearing the wisdom that you’ve passed on today.

[00:39:28] Michelle: Thanks, Luce.

[00:39:30] Lucy: Thank you, Michelle.

[00:39:30] Michelle: Thank you.

[00:39:39] Rachel: Well, that was a first for Extremely Human Lucy, having a parent come along and have a chat with us. I really hoped that some of our policy makers and service providers could listen to that because there’s such good wisdom around how to better organize ourselves and respond to people and family members.

[00:39:58] Lucy: Yeah. And does it in a very gentle. Yeah, gentle way. Not condemning anyone, recognizing everyone’s doing their best, but there’s always room for improvements.

[00:40:07] Rachel: So beautifully spoken, actually, wasn’t it? Because what I really admired about Michelle is I’m sure there was experiences that were really disappointing or where it was really not well treated. That’s an assumption I’m making. But what she chose to focus on were the things that helped and the special efforts individuals went to that made a difference.

[00:40:32] Lucy: Yes.

[00:40:33] Rachel: And it really affected me.

[00:40:35] Lucy: The thing that really stuck with me was Michelle talking about not wanting to fix her child. You can’t fix things, as hard as that is, but to be there is really important. And I like the part how she was talking about she really wanted her children to have the tools to do what they needed to do in life, because if she solved everything for them, if something else came up later in life, they wouldn’t have those skills.

[00:40:58] Rachel: I think it’s sort of similar to what I was feeling. I really was kind of moved by the power of love in Michelle’s stories and also the amazing things that can come from adversity. Yeah, I know. We’ll hear from Katya in our next episode. And I, Michelle’s daughter, and I, you know, really encourage people to tune into that because I think it will help make sense of some of Michelle’s story. We hear Michelle, her son Nick, and Katya all doing amazing things with their. With their expertise.

[00:41:30] Lucy: They’re a powerhouse family.

[00:41:33] Rachel: They are. You know, it’s really inspiring, and it’s not a conversation that I’ll forget quickly.

[00:41:51] Rachel: discovery College acknowledges that the views shared in this podcast reflect personal experiences and are not a substitute for professional mental health advice. They do not represent the views of Alfred Health.

[00:42:02] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website discovery.college.

Check out Bek’s book: Dying for a Cure: A Memoir of Antidepressants, Misdiagnosis and Madness

Come and listen with:
Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT- Fight of my life

[00:00:00] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:13] Rachel: Discovery College acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Bek: So I went from being diagnosed with postnatal depression to being diagnosed with adjustment disorder, and then I was diagnosed with bipolar mood disorder and I ended up on six different psychoactive medications. I was in and out of psychiatric hospitals over and over and over. What didn’t become clear for an extremely long time was that every new behaviour that I was exhibiting and every new disorder I was diagnosed for that behaviour was also what’s known as a psychiatric adverse effect of the very medications I was on.

[00:01:21] Lucy: I’m Lucy.

[00:01:21] Rachel: And I’m Rachel and we’re the hosts of the Extremely Human podcast.

[00:01:26] Lucy: Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria, or moments that feel completely unreal.

[00:01:37] Rachel: On Extremely Human, we hear from people who’ve been there and share what they’ve learned along the way. Together we ask, how can we meet the full range of human experience with kindness and compassion?

[00:02:02] Lucy: After her first daughter’s birth, Bek experienced intense postnatal panic. Misdiagnosed and overmedicated, she spent three years in and out of psychiatric hospitals. In this episode, she shares how she fought to get her life back and regain her agency.

Today we’re here with Rebekah Beddoe, author of Dying For A Cure: A Memoir of Antidepressants, Misdiagnosis and Madness. Thanks for coming in today, Bek. How you going?

[00:02:31] Bek: I’m so happy to be here.

[00:02:32] Rachel: We’re really happy to have you.

[00:02:34] Lucy: Did you want to tell us a little bit about you as a human?

[00:02:37] Bek: Okay. Well, I am a mum of two girls .I’m married, have been for, I think, coming up on 25 years. I love all things nonfiction. I’m a real information maniac, if you like. I can’t get enough of information. And I love true crime. I love. I even love reality shows, even commercial tacky reality shows like, like MAFS and things like that.

[00:03:06] Rachel: Secret Confession from me. Me too

[00:03:07] Bek: Yeah, the Real Housewives series. I love them. And the reason I love them is I just love studying human behavior in all its forms. Quite obsessed.

[00:03:20] Rachel: I know we’ll get through, get onto this in the episode, but I just want to Say your book is just such an amazing, important piece of story that needs to be read. Yeah. So thanks for giving it to us and to the world and, yeah.

[00:03:35] Bek: It was something that I couldn’t not do.

[00:03:37] Rachel: We usually like to start episodes with a bit of a chat about disproportionate reactions, either from you or someone else. Do you have anything you can share around a disproportionate reaction?

[00:03:49] Bek: I find the question disproportionate really interesting because it’s such a subjective term. The first thing that comes to mind for me is, is the behaviour that emerged after the birth of my first daughter. And I, in the moment, knew that my thoughts and my feelings and my actions were disproportionate, but I couldn’t help them.

[00:04:11] Rachel: Well, that’s a great start to our conversation. I guess it leads me to being curious about what does the. What does an extreme state mean to you?

[00:04:20] Bek: I’ve been in many extreme states that are all to do. All to do with parenting in some way or another. But getting back to the disproportionate extreme state. Well, I mean, going back to the book. The book is about the birth of my first daughter and me being diagnosed with postnatal depression when I went to see a GP for these things that I’m talking about right now, even though it was diagnosed as postnatal depression, which I resisted at the time because it just didn’t feel right.

Because on reflection, it was really more postnatal panic. It was panic. And the disproportionate sort of actions and behaviors that I were having were that, first of all, being pregnant, I was walking on a cloud the whole time. I had the best pregnancy, felt like I was the only one who’d ever been pregnant before. It was just so incredible. And every week, tuning into, you know, an Internet site that I was looking at and what’s going on with my baby at week 22 and now week 23, you know, fingernails are growing and all that stuff.

And then pretty much from the minute I went into labor, really, and went into the whole hospitalized setting, things just were whisked out of my control so fast.

And I was immediately hit on the very first night in hospital when my baby was in my arms and not in my tummy.

What have I done?

[00:05:53] Rachel: Wow.

[00:05:53] Bek: What have I done?

I have another human and I’m fully in charge of this human.

She can do nothing for herself. I neglect her for a short period of time and horrendous things can happen that sort of began to build up over, you know, the kind of 8 to 12 weeks to get to some specifics when I knew that what I was thinking and doing were kind of extreme and probably disproportionate. The very first things that I can remember happening were being out on a walk with her. You know, and she’s a little bub and she’s still on the flatbed bassinet and everything. And you see people doing this all the time, right? And here am I walking along. We lived on quite a busy road. I’m just immediately aware of the fact that I’m pushing her ahead of me past driveways.

How dumb is that?

How dumb is a pram? Why am I putting her out in front of me where there’s potential danger? And, you know, when would it ever have occurred to me that walking my baby, taking her for a walk in a pram, was going to feel so perilous? And so then everything began to feel that way. And it was things like holding her in my arms and just having this notion that I could drop her right now, my arms could let go and I could drop her four feet to the concrete or the kitchen floor. You know, I wasn’t going to, but it was just. It could happen.

What if I accidentally moved quickly while I was changing her nappy and flung her into the wall? That’s when it started to get disproportionate, because I knew it, but at the same time I couldn’t stop it.

So it really did get to a point and relatively quickly because we are talking in the first, sort of, like I said, eight to 12 weeks, and I was isolating at home and withdrew from pretty much everything.

And it was at that point that I ended up going to the doctor to say, I’m not coping.

[00:08:02] Lucy: Before we get into that, is it normal for mothers to be having sort of intrusive thoughts about what could happen to their baby?

[00:08:10] Bek: It certainly wasn’t something I felt I could talk to anybody about. I was in a mother’s group, and every time I went to that mother’s group, the other babies were on the floor under their mobiles. And another thing about my daughter, she was very unsettled as a baby. She basically didn’t sleep during the day. She only catnapped about 20 minutes here and there. So that side of it was very full on as well. But I’d be outpacing the deck while everyone was having their cups of coffee in chat. So whether people were chatting about those things when I wasn’t around, I don’t Know, but I also don’t think so. Everybody just seemed to be talking about the best versions of mothering. Well, what seemed to me then the only versions of mothering and I was having this awful one.

So why I’m bringing up the. The thoughts of my arms could let go or I could flinger into the wall. I don’t think that’s common to go to that level. And even at the time, because it felt like. It felt like I had a stranglehold on me, like I was restrained by these things and that is why I went to seek help.

[00:09:17] Rachel: I’m wondering, Bek, does it change things talking about this as an extreme state or an extreme response as opposed to postnatal depression or something else that is commonly how these things are referred to.

[00:09:34] Bek: An extreme response to me is something that is very human, very human.

Something that, you know, I would define it as something a human experience that goes beyond your normal coping abilities. Even at the time of all this happening in me, going to the doctor, medicalising it was not something that I wanted to do.

I just heard that people who were struggling with their children, their newborns, go speak to your gp. And that’s what I did. And I didn’t really know what was going to come out of that.

[00:10:08] Rachel: What came out of that?

[00:10:10] Bek: Well, what came out of that was the doctor saying to me, he was lovely, very, very compassionate. And he said to me, I think that you might have a touch of postnatal depression. On hearing that, it was jarring but  it was also really welcome because it was like I didn’t feel it was depression. It didn’t start as depression anyway.

I think getting to that point of displaying depression, like behaviors like the isolating and the pulling back, but I was really just going for support and I didn’t know what that would be. I didn’t want it to be medical.

And he did, he did two things and one of them I welcomed with open arms, the other one I didn’t. He prescribed, prescribed me an antidepressant and he also referred me to a mother and baby unit for an inpatient stay.

So as he said it, you know, round the clock support and all of that. And I thought, oh, wow, I can’t wait for that part. So I went home from that and I didn’t take the antidepressants but I did go to the mother and baby unit. Part of the support at the mother and baby unit was wonderful and I never wanted to leave.

And that was the beautiful compassion of the nurses and making me after my Baby was in bed. Them bringing me a hot chocolate to help me go to sleep or running me a bubble bath, all these beautiful things. And the other mothers too, of course, Being around other mothers and these group therapy sessions we’d have, I loved all of that.

However, I realized there was no escaping the medicalization of what had occurred in the doctor’s room. And it followed me to the mother and baby unit as well. It came as a shock. I was assigned a psychiatrist and I said, oh, you know a psychiatrist. And the nurse said to me, oh, yeah, look, all our ladies who come in here with postnatal depression, we get them to see a psychiatrist. The next level of concern was, hang on a minute. When did I get this actual diagnosis? Like it’s been picked up from the doctor and now it’s here and you’re saying it, and now a psychiatrist is going to be told it. And there was this runaway medical train happening.

[00:12:20] Lucy: It sounds like you also didn’t really have, like, an input of any of it, of, like, what it meant to you or what you felt like you were going through. It was just sort of like a label slapped on you.

[00:12:30] Bek: I felt I had no agency whatsoever. Plus, everything was new, right? I’m a new mum. Everything’s new, new, new. I’m new to this type of environment at the mother and baby unit. I’m new to the word psychiatrist. I don’t know what happens when you see a psychiatrist. And I didn’t even know how to have agency. I had no idea. I felt I had no choice but to just go with the flow. I’d asked for help and here it was, so off I went. But, yes, there was most definitely that feeling of just that trepidation and uncertainty of like a little bit like when I held my daughter in my arms for the first time. What have I done?

You know, this other life is taking on form and I’ve made that happen, too.

[00:13:22] Rachel: Such a powerful description. You know, I just. I felt it in my body. When you talked about the loving care and compassion of the warm baths and the hot chocolates and being around the other mums.

[00:13:34] Bek: Lavender essential oils.

[00:13:36] Rachel: Lavender essential oils. And. But then at the same time, this loss of control of.

[00:13:42] Bek: Yeah.

[00:13:42] Rachel: What was coming or happening.

[00:13:44] Bek: Yeah.

[00:13:51] Rachel: So Bek. You know, when. What happened from meeting the psychiatrist.

[00:13:55] Bek: It all happened on day one at the mother and baby unit. It was getting late. It was. I think I’d already had dinner and I’m thinking, I guess he’s not coming today. But very casually, I think it was half past six at night or something like that. This middle aged man turned up at my door and came in, introduced himself and he was my psychiatrist. And he sat down next to me on the bed and I’m thinking, oh, it’s all very casual, I’m feeling less and less threatened, you know, by this situation. And he got, he got into some psychoanalysis very rapidly that had me in tears. And he’d also reinforced that I take the antidepressant that the GP had prescribed.

So at that point I relented. The way he put it, the psychiatrist, was that it would enable me to settle the anxiety and get some good sleep and all of those things and then that would help me to get on with coping mechanisms. So, you know, I remember staring at it in my hand for a moment and going, oh, well, down the hatch.

[00:14:59] Rachel: It’s pretty compelling though.

[00:15:01] Bek: Yeah, I literally can still remember looking at it in my head.

It was such a pivotal moment and yeah, it really turned out to be a pivotal moment.

[00:15:12] Rachel: In what way?

[00:15:13] Bek: What was explained to me about the medication was that it would take around, you know, unfortunately, I was told, unfortunately, it will take a few weeks to take effect. It was explained to me that we have, you know, something that produces serotonin in our brain and that in situations like mine, sometimes there isn’t enough of that. And so this medication helps to boost those levels and just to. It corrects the imbalance, that word was used, the chemical imbalance that’s going on in there.

So that all sounded fair, but the one nagging thing that wasn’t answered, how do you know I’ve got an imbalance?

Where are the blood tests? What, you’re a doctor, right?

But no, these will correct the imbalance. That just never sat well with me.

From the very beginning, it didn’t sit well with me. After a couple of days of taking the medication, I was actually sitting in a group therapy session, one of my favourite things, and I just suddenly felt my heart start to beat. I could hear it in my ears, blood was rushing in my ears, I was finding it hard to breathe and I thought, I’m having a heart attack. And I’m thinking, it’s the medication, it’s giving me a damn heart attack.

So I leapt up and I ran back to my room where I hit the buzzer for the nurse and, you know, and I’m hyperventilating and she comes in and I’m expecting her to be getting an ambulance and she took one look at me and she left the room and returned with a paper bag.

And she said, here, just breathe into this. So I did. And sure enough, it ended, the episode ended. And I was gobsmacked what the hell just happened? And she said, it’s all right, sweetheart, you’re just having a panic attack.

Panic attack.

And I’d heard of panic attacks and I’d heard how they get you by surprise. And I heard all these things. So I’m just thinking, wow, why am I getting worse? Why am I getting worse?

And that kept on happening.

And I had full blown insomnia, I had shocking anxiety. And none of it was related to my daughter, none of it was related to her. And I could not understand it and it terrified me. And what happened in response to that. So, I mean, this is a matter of only a few days in really of being. It was a two week stay there. The psychiatrist, he’d come and see me every day and he came extra fast this particular day. And he doubled the medication and he added an anti anxiety med. I think it was Valium at the time, maybe even a sleeping tablet as well, I’m not too sure. But the medication was just increased and I was assured.

You’ll be okay. You’ll be okay. This is just part and parcel. This is just part and parcel. Yeah, but it wasn’t okay, that’s very scary. Yeah, it was. However, my objectivity on being able to sense how scary it was soon disappeared.

The reason for that was I began to lose touch with what was going on around me. I started to live in an alternate sort of emotional state. Not psychosis. I’m not saying it was. It was not like that. It was just my mood didn’t match reality and it actually felt quite good. When that kicked in, all I can remember on reflection was actually feeling better at everybody around me being afraid of how I was behaving and I was slipping into hypomania.

[00:18:53] Lucy: Can you explain what hypomania is?

[00:18:56] Bek: Yeah, hypomania, as I learned a long time after the occurrence, is sort of the episode before full blown mania. So when people have extreme highs, that’s mania. And hypomania is what can come before mania. It doesn’t always go to full blown mania. But I was in this hypomanic state. And I can only imagine, because I didn’t have the objectivity, I can only imagine how frightening that was for my husband, for my mother. More medication was being added or changed and I was actually moved from the mother and baby unit, which was in a general hospital. It was just a ward in a general hospital. It wasn’t a mental health facility but I was moved from there to a psychiatric hospital and within fairly short order. So we’re now talking like a few months time. The first very dramatic thing that happened was when I was on weekend leave from the hospital.

My husband left me alone to go to the supermarket to get something for dinner and I was preparing some of the dinner and I had a knife in my hand and while I’m chopping the vegetables I decided to slice my arm.

And I can remember jumping back from myself, what the hell did I just do? That was the beginning of things becoming completely out of control for the period of over two years. And that’s what the book’s about.

So the book is about escalating psychiatric symptoms that fit with criteria of psychiatric disorders which I would be diagnosed for. So I went from being diagnosed with postnatal depression to being diagnosed with adjustment disorder and then I was diagnosed with bipolar mood disorder and psychoactive medications all together, all at once. And over this period I was in and out of psychiatric hospitals over and over and over and I was in locked wards because I had attempts on my life. Several.

I was in stages of full blown mania as well as crashing what I now know to be a condition called severe acute drug induced akathisia which is just hell on wheels. I liken that to being set alight and being told to live with it. You can’t live with that.

What didn’t become clear for an extremely long time was that every new behavior I was exhibiting and every new disorder I was diagnosed for that behaviour was also what’s known as a psychiatric adverse effect of the very medications I was on.

[00:21:59] Lucy: I was going to ask, in hearing you speak, how did anyone know what was going on for you if you were on such a cocktail of drugs?

[00:22:05] Bek: No one did. It was my mother actually who had. My husband had a big issue with me being medicated, full stop. He really didn’t like it. But my mother, you know, as I’ve sort of found out later on and I was able to listen properly and take things on board, my mum began to get concerned. I had a friend who was studying her postgrad in psychology at the time.

She was really concerned and they were trying to speak to the psychiatrist but the psychiatrist had such a one on one, she’s my patient type of, you can’t intervene, it’s me and her, they couldn’t get heard. And so advocates that I did have ended up backing down. My mother didn’t, but friends did. I mean friends ended up just backing Right off, they didn’t know what to do anymore. I was at one point told that I was going to have to learn to live with the way I was feeling and behaving and that utter despair because I was in a severe state of this akathisia that people may know of these days does get talked about more. It can be a mild agitation or it can be what I had which was severe and acute.

And I have a psychiatrist that I cite in my book to who makes the comment that I back up 100% and that is that if a. If a person going through that is not told by their caregiver, their doctor, their psychiatrist, their therapist, whoever, that it is a readily correctable drug side effect, they will attempt to take their life because they can’t live in that. You can’t live in that. And when I say it was akin to being set alight on the inside and saying, you just have to live with that, you can’t live with that.

But that’s when the turning point came.

[00:24:11] Rachel: Wow, Bek, it’s just such a hard story to listen to. I’m particularly affected by this idea that none of the people that knew you best and loved you were being listened to or can, you know, what they were noticing was being considered.

[00:24:27] Bek: Yeah, they were feeling terribly helpless as well.

[00:24:31] Rachel: I can imagine everyone was feeling so helpless. Yeah. Can you tell us about the turning point and how that happened for you?

[00:24:37] Bek: It’s. I giggle because such a mammoth turning point came so incidentally, as I said, I was in and out of psychiatric hospital all the time and you get sort of your little groups of people you’ve seen before and you know, you tend to sit with them and things like that. But something quite unusual happened one day when I was out of my room and I was in a hallway walking along and there was a lady there who’d been there for a while. I had absolutely nothing to do with her.

And she approached me directly and she put a hand on my shoulder or something and she handed me a pamphlet, a little booklet, and she was quite Christian and religious. And she said to me, you know, I don’t know if you’re religious or spiritual, but I’ve been praying for you. And I’d just like you to have this. And I was like, oh, thanks, you know, that’s nice.

Wasn’t really in a headspace to be praying or doing much at all. And then at around the same time, I had enough of everything, obviously. I’d also put on a humongous amount of Weight, I’d gained close to 30 kilos in weight. And that was very clearly from the medication, because it piled on after starting certain medications. And I decided that I didn’t want to be taking that particular medication anymore. So I didn’t.

And almost immediately within. Within sort of days, began to feel a shift in my consciousness. I became aware of myself and it felt something like mental health.

I was able to have the cognitive thought process that what if these medications, some of them. I certainly didn’t think all, but what if some of these medications are actually making me feel this horrendous as that was happening. And the lady came to me about, you know, I’m praying for you. I learned much later on my mother at this particular time had gone for a trip, short trip to Europe, a getaway.

And she. My mother’s diary entries are all through the book, so you get her perspective on what she was seeing. And this particular passage is in the book where she talks about going to Notre Dame, the cathedral, and talking about being overwhelmed herself spiritually. Now, I’m baptized Catholic, but we’re not practicing, and my mother’s the same, but she was overcome with this, she said. And she writes about feeling, like laying, you know, face down on the. On the floor with her arms stretched wide, like the nuns would do. And I realised when writing the book, all these things happened at once. There was a synchronicity of these spiritual things going on. Me having this awakening of, like, oh, that drug is gone, and I’m feeling somewhat, like, better.

And from then, everything changed in the best possible way.

I was sent home from hospital around this point in time because the improvement in me was noticeable. I had a conversation with my husband and I sort of have to explain that I had become so unwell that I was at a point where I’d been told by the psychiatrist that an unwillingness to take the medication would be seen as a sign of mental deterioration. There was no win in this.

So. Because the most natural thing would be to ask him, wouldn’t it? You know, I don’t want to be on this anymore. Can I try that?

I didn’t have that as an option, and I’m not advocating that to everybody, but this was my experience. I didn’t have that option. So I did confess to my husband what I wanted to do, and that was I wanted to try very carefully weaning from some medication.

And I had referenced books on the subject by qualified psychiatrists. So I wasn’t just going this alone. And, you know, I had some idea of what I was doing. But I began to do it painstakingly, slowly. So that first medication I came off, I had done kind of quickly, but I did it painstakingly, slowly, and I did it in the order that was recommended to do with what I’d read and all this sort of thing. And I’d said to my husband, and, okay, I’m dropping down to this dosage this week of this medication. And he knew that if he noticed any signs of anything that he was concerned about, he’d speak up and all of that. So.

But over the course of about nine months, I think it was. I gradually weaned myself from all my medication. I regained my mental health completely.

My daughter was now two and a half. The postnatal issues had kind of gone, but not for reasons that were good.

But with a lot of research and just personal understanding, I came to understand that I had reacted badly to that very first antidepressant by going into that state of hypomania and the insomnia and the detachment from, you know, everything normal got kind of going on around. Around me that I should have been paying attention to.

[00:29:53] Rachel: Unbelievable the story, isn’t it? I’ve read the book and it still feels unbelievable.

I wonder what role your family, friends, people, people around you played in that process of nine months. What gave you comfort and confidence in what was happening?

[00:30:13] Bek: My husband, he, whether he knows it or not, was absolutely. Was of immense help. I needed him, and he was there as time went on. And my mother as well. And, you know, my mother was amazing support all the way through this.

She’s a very pragmatic person. She’s not terribly emotional or emotive, but she’s a very pragmatic person. So she was kind of like boots on the ground the whole time, you know, and helping Nige with Jemima, the baby and all of that. And so she was there with me all the way along as well, and. And friends wise, I managed to retain some friends, but I lost more. Yeah.

[00:30:59] Lucy: Can I ask if you ever got to see, like, the psychiatrist or any of the staff that were treating you and then could see where you are on the other side of coming out?

[00:31:08] Bek: One part of the whole thing I should mention is that along with the weaning of medications, I went back and saw a psychiatrist who had been involved when I was diagnosed with postnatal depression. I went back to him as a patient and I told him what I was doing. At that point, I was. I think I was pretty much off medication, and I told him I would like you to tell me, please, if you believe that I have bipolar mood disorder. And he said to me, I can do that. He said, but I need to tell you it’s going to be 18 months, two years. It’s not going to be a couple of sessions. I need to observe you, you know. And I was like, yep, I understand.

And I did. I went and saw him for close on two years. And I can remember that day so clearly when he said to me, well, I don’t know what you want to do from here, Bek. He said, you know, a lot of people just get sick and tired of seeing psychiatrists. You might have had enough. At this point, I see absolutely no evidence of you having bipolar mood disorder.

[00:32:09] Lucy: What were you thinking in that moment?

[00:32:11] Bek: Well, I’d become so conditioned to not having mood fluctuations because they were seen as sign of illness. What I wanted to do was get up and hug him. I wanted to leap out of my chair and hug him, but I just thanked him.

[00:32:30] Rachel: I’ve got to be honest, Bek, I’m feeling a whole lot of emotion hearing your story, and I’m just so grateful for what you’ve shared. I wonder if it’s all right with you if we start to hear about how life is for you now and what has come from your healing from this. Have you got any thoughts about what you might say to someone who is experiencing postnatal depression?

[00:32:53] Bek: Like how I was in the beginning?

[00:32:55] Rachel: Now, like, what would you say to them from this experience?

[00:32:59] Bek: Well, I have had a second daughter since this experience. There’s eight and a half years between the two of them. Something that I learned about infant psychology helped me a heck of a lot.

And that was, first of all, I should say, that one of the things that got to me as. As gets to any mother, but my baby crying would. The reaction, it would set off inside of me. You know, I mentioned that I’d probably call it more postnatal panic than depression. And. And just that helplessness of her crying was so hard to bear. Another feeling I would feel was punished by the crying from that, I would just feel like such a failure. How can I not comfort my child? You know, all of that. But when I came to understand that when a baby does cry, a lot of the time it’s in frustration and it’s in frustration at themselves. They don’t know that. Right. But we can. We can understand that. If we think about it, they don’t have the capability to individuate. I mean, that just sounds like common sense. When you say it, your hand is their hand, your arms are their arms. They don’t realise that they’re not you and that you’re not them. So if you can kind of transfer that to the frustration a baby must feel and not being able to do a damn thing to get its needs met, a lot of that is why they’re crying.

So just that whole concept helped me a lot. It wasn’t something I was doing wrong, just how it is.

[00:34:43] Lucy: You mentioned you did have another baby.

[00:34:46] Bek: Yes.

[00:34:46] Lucy: So how did what you learned from that experience shape the way you became a parent, a parent of a second child and also just like how you approach life?

[00:34:58] Bek: Well, it’s the single most transformative experience I’ve ever had.

Nothing has topped it so far. I’m a heck of a lot stronger than I was. A heck of a lot stronger. I don’t doubt myself anywhere near as much as I used to. I mean, those sorts of things have changed a hell of a lot. I did do a lot of self affirming things, doing things that bring some sense of success and self mastery too, however tiny they might be. And you know, it can sound a little off, but I grew a couple of tomato plants. I mean, it was just something that I did and I achieved and it means something. The meditation helped very, very much. I used to get up 20 minutes early in the morning. It sounds nuts, I know when you’ve got a newborn. But I would get up 20 minutes before her in the morning to watch the sunrise. I’d look through my favorite window in the lounge room. There’s a beautiful big ghost gum and I’d see the sun rise and change color reflecting off the leaves and the sun change, you know, as it chased the, the dark away. And I just have a cup of coffee and I just watched that before I got into everything else. So I just chipped away at keeping my sense of self and keeping my identity.

And that helped me immensely because it still was really hard being a new mum again with new challenges and extra challenges as well. But yeah, that was a mantra and something to live by was to keep my sense of self. Yeah.

[00:36:29] Lucy: That’s incredible. I’m so glad to hear that you found yourself again.

[00:36:32] Bek: Thanks.

[00:36:33] Lucy: Made time for yourself.

[00:36:35] Rachel: Is there something you can say about how you want to respond to or how you would like to be responded to at times of distress?

[00:36:44] Bek: The very best thing I’ve found to do, and what I could have used more of is not to overreact or overact or even necessarily act at all. I Guess I can give an example of. Recently, my cousin, he passed away from cancer. He was in a terrible state. He was riddled with cancer. He was dying. He was dying right there in front of us. And I just sat with it, and I just sat with him and the simplest of things, you know, even though he was autistic, he was very tactile. I just stroke his arm while I sat beside him or, you know, give him a little head massage. It didn’t matter. You don’t always have to do anything. And in fact, most of the time, the best thing is to do very little. Just be.

Just be and don’t judge. That’s about it.

[00:37:41] Rachel: That’s really powerful. You know, I’m going to really hold on to that. Don’t overreact, don’t overact, or don’t even act, you know. What a beautiful phrase.

[00:37:50] Bek: Thanks, Bek.

[00:37:52] Lucy: You’re an amazing storyteller. I can honestly sit here and listen to you speak all day.

[00:37:58] Bek:  Lucy, thank you.

[00:37:59] Lucy: I just want to say a massive thank you for coming in and sharing that story because it’s such a nightmare of a story to come back and revisit, but unfortunately, it is still happening to so many people. And that is.

That’s why it’s so important to share, to spread awareness. And it’s just amazing to see who you are now and the incredible person that you are, because you really are a beautiful.

[00:38:28] Bek: Lucy, thank you. You’re gonna make me cry.

[00:38:31] Rachel: It is a nightmare, nightmare story. It’s also a heroic story. You know, like, I think the survival and the turning point and, you know, that is just such a amazing story of human strength.

[00:38:47] Bek: Thanks, Rachel.

[00:38:48] Lucy: I just quickly asked, though, where can people find your book?

[00:38:52] Bek: Oh, sure. It’s available pretty much anywhere. You would normally buy an eBook, a Kindle, or a paperback. And just look up Dying for a Cure by Rebekah Beddoe, and you’ll find it.

[00:39:02] Lucy: Thank you.

[00:39:03] Rachel: Thanks, Bek.

Well, Lucy, you know, that conversation was just amazing. Bekk stories and others like it are really some of the reasons that we set up this podcast.

We wanted those stories to be heard. I mean, Bek’s story really reminds me about how dangerous it can be when someone who’s experiencing really difficult life circumstances or complex life challenges is met by health providers in a way that makes them believe there’s something wrong with them. You know, that there’s a problem in their brain or there’s deficits or a lifelong illness. Bek’s got her life back, but many people don’t. That story Bek shared with us about how she fought to regain her life and find her agency again is incredibly inspiring.

It’s unusual and it’s also unfair that she’s had to do that.

[00:40:07] Lucy: It is a nightmare story, but knowing Bek and just the beautiful bright light of a human that she is, I’m so happy that she came out the other side of that. What stood out for me from this conversation was that beautiful imagery of her getting up and watching the sun rise and planting tomatoes and doing things for herself because she didn’t get to do that for so long. Just amazing to see the person that she is.

[00:40:45] Rachel: Discovery College acknowledges that the views shared in this podcast reflect personal experiences and are not a substitute for professional mental health advice. They do not represent the views of Alfred Health.

[00:40:57] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about Discovery College, please head to our website. Discovery College.

Please keep in mind that this guest would like to remain anonymous.

✨ Check out the Star Size Comparison video mentioned in this episode: https://www.youtube.com/watch?v=HEheh1BH34Q

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT- Lost and Found

[00:00:01] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Lucy: In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] Rachel: discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] Lucy: The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] Rachel: Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] Lucy: Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question how can we respond to distress with greater compassion and humanity?

[00:02:15] Lucy: In this episode, our guest shares their experience of two extreme states, psychosis and depression. They talk about how they managed to overcome intense adversity and the teachings that followed. They speak about how reading 200 books in two years helped them find purpose, and how they found a way to find a life worth fighting for.

Thanks for coming in today. For those who don’t know who you are, would you be able to just tell us a little bit about yourself? A few tidbits.

[00:02:45] Guest: Few tidbits. Yeah. So, um. I’m just a simple human being trying to do my best out here in this crazy world. Probably one of the more interesting things about myself is that my sport of choice is parkour, which my girlfriend thinks is ever so dorky. Surprisingly, I’m quite creative. That’s not a thing that I used to be good at. Like when I was in high school, I was very academic, and then I took a gap year, and I realized I was young enough and had lots of potential. And I was like, I can do whatever I want. So I changed from, I was meant to study law and criminology, and then I did a 360 and did film and tv instead. I guess I’m still working out who I am and what I want to achieve in life and where I want to go. And, you know, there’s such an intense unpredictability about life. Like, none of us know what’s going to happen tomorrow. So I guess I love watching my life unravel like a story and getting to participate in that and be around the beautiful people that I’ve got to meet.

[00:03:41] Lucy: Such a cool way of looking at life. Like, you’re the main character in your narrative.

[00:03:45] Guest: I don’t think I am the main character of my narrative. I think I’m a side character to a lot of people.

Lucy: Which is important. Yeah.

Guest: I don’t think it’s pessimistic, though, to say that I’m not the main character, or maybe that’s just me being resigned to the fact that I don’t always want to be in command.

[00:04:02] Lucy: I feel like that’s a nice way of looking at it. A lot of people just sort of think they’re the only person in the universe and everyone else is the side characters. But in your narrative, you’re the side character.

[00:04:13] Guest: Yeah. It’s good for the plot.

[00:04:14] Lucy: It’s good for the plot! We’ve got one structured question of the day, and the rest is all a bit free flow. But the question we want to ask is, have you ever had a disproportionate reaction to anything in your life?

[00:04:31] Guest: I think the most immediate example is there’s a Japanese animation called Attack on Titan that was very popular, and it kind of started airing when I graduated high school, and I followed it for ten years, and then we waited, like, a year for the last two episodes to come out. And I remember watching the last episode, and I was just crying the whole time because I was so joyful that I got to witness the end of this story and also just absolutely weeping because it’s over. The end of an era has come, and I don’t know if that is a disproportionate reaction because it felt very natural.

[00:05:08] Lucy: Yeah.

[00:05:09] Guest: I couldn’t not cry.

[00:05:11] Lucy: It takes you on a journey. A  TV show takes you on a journey. I remember I cried at the last episode of Friends when Rachel and Ross got together. I was weeping. So I very much relate to that.

[00:05:21] Rachel: I cried on the last episode of big bang theory and Game of Thrones. They’re part of your lives, these characters, they. So there is a sense of loss when it finishes.

[00:05:31] Guest: Yeah, absolutely.

[00:05:32] Rachel: Yeah.So we were wondering, can you tell us a little bit about what your experience of extreme state has been?

[00:05:41] Guest: Yeah, we could be here for years talking about this, but I guess I’ve been fortunate enough to experience two very extreme states, and I say fortunate in the sense that it was a great learning opportunity for me as a human being eager to grow.

So I’ve experienced psychosis, which was very challenging in its own right, and I guess we can unpack that a little bit today, hopefully. And the other experience is the polar opposite, which was depression and intense suicidality. I would. Yeah, I would argue that these are pretty extreme states to kind of experience emotionally, personally, and just, you know, within social circles. You know, it impacts your friends and your family, or at least it did for me. I guess I kind of want to preface that anything I say today is incredibly subjective and based on my personal experiences, because it’s very personal for each person that goes through this. Psychosis was the first kind of extreme state that I’ve ever experienced. And leading up to it was interesting because I was in a pretty unhealthy relationship, and I learned about this thing called negative empathy, and it’s when you’re in a relationship and you take on their negative emotions as your own.

[00:06:59] Lucy: I’ve never heard of that.

[00:07:00] Guest: Yeah, negative empathy.

Yeah. I only learned about that, like, last year, and I was like, oh, that’s what that was.

[00:07:07] Lucy: Yeah, right.

[00:07:08] Guest: So I was in a relationship that wasn’t great for me, and then I got out of that relationship quite. It didn’t end so well. And then I was working two jobs, and I was under a lot of pressure. So the two jobs, I was working a late night shift from about 12:00 a.m. to 03:00 a.m. and the next job started at 06:00 a.m. that day. So I got about 3 hours sleep before I was at work again.

So my mind was under a lot of pressure. It was building up, and I became anxious, but I didn’t know what anxiety was. Cause I’d never experienced it, so I was stressed. I started drinking more, doubled down on work, worked harder than I had before.

And eventually my mind just built up and up and up. And then it kind of. I would describe it as a snap. Like, I remember exactly where I was when my brain just snapped into psychosis.

And then I was in that state for a year, which I’ve heard is a really long time to be unwell. That’s a word I’m happy to use. But, yeah, I was in that experience for a year.

Pretty intense.

[00:08:20] Lucy: Was it on and off or just constantly in that state?

[00:08:24] Guest: Pretty constant, yeah. Yeah.

[00:08:26] Lucy: And did you have any awareness that you were experiencing psychosis?

[00:08:30] Guest: No. So when I was in the experience, I had no idea what was going on. And even though I was hospitalized and the doctors tried to explain to me what was happening in my mind, I wasn’t very receptive to it because I didn’t think anything was wrong. I was quite. I wouldn’t say I was happy in the experience because I was very out of control and kind of lost command over my own agency. My brain didn’t know how to respond to the stress in any other way. So my reality kind of just crumbled. And everything that I kind of believed was thrown out the window. And all of a sudden, I had these profound beliefs that made no sense to anyone else other than myself. So I remember I was, like, playing piano, and my brain just kind of snapped. And then all of a sudden, these thoughts inundated my mind about, you know, maybe the universe is simulated, maybe there’s multiple universes and, oh, I think there’s probably a god. And these ideas came out of nowhere. And my whole cognition and perception on life shifted in a second, which was a lot to kind of navigate. And there was really no way to navigate it because, again, I wasn’t aware of what was happening to describe it in a common, more common way, because obviously it’s quite an individual experience. But for people that haven’t experienced psychosis, I guess it’s akin to doing certain kinds of drugs. But the difference, I feel that, between psychosis and a drug like that is that when you take the drug, you are hopefully doing it willingly. You’re choosing to have this profound experience. You know, it’s temporary, it will pass, whereas psychosis, you don’t know how long it’s going to go for, and it’s not controlled. You didn’t choose this experience. And I think that’s the difference. I think psychosis is very convincing when you’re in it. For me, like, I was very convinced of all these things that were going on in my life, and I think it feels like you’re accessing a different part of your mind. Like, there’s a film called Lucy and a film called Limitless with Scarlett Johansson and Bradley Cooper, respectively. And they are films that explore using 100% of the mind. And I think my psychosis felt like that to me, that I was overwhelmingly positive and that I had access to all of my memories.

I guess I felt omnipotent, for lack of a better term.

[00:10:49] Lucy: Sounds like a pretty incredible feeling.

[00:10:53] Guest: Incredible in a destructive way.

[00:10:55] Lucy: Yep.

[00:10:56] Guest: I guess at the time, it felt good, but as soon as I was out of that experience and could look back, I was like, okay, I lost 90% of my friends.

They didn’t die. They just abandoned me or couldn’t navigate my life with me anymore. But it really, really challenged me to kind of view myself differently. And I had to navigate this entire new kind of perspective. And I would call a lot of thoughts I had looking back, delusions. And I’m happy to use that term for myself.

[00:11:25] Lucy: Can you just say what delusions means to you?

[00:11:28] Guest: So, a delusion to me is an unsupported or an unfounded or sudden belief in something, because I know there’s, like, you know, religion is a thing, and there’s philosophy and there’s, you know, a whole range of thoughts that you can believe. But for me, it was the fact that they were sudden, that they had no logic to support them. There was no kind of sound reasoning that went into these ideas. They just snapped into awareness. And that’s why I would call them delusions for me. Yeah. Yeah.

[00:12:01] Rachel: I really heard you say that. I think 90% of your friends might have abandoned you through that. Were there people that were with you and tried to help?

[00:12:12] Guest: Yeah, I think it’s probably closer to 95%, to be honest.

I did have people that were there for me. One of my best friends kind of rushed to my aid when I was hospitalized and really was very angry that I was in hospital. They obviously didn’t have the complete picture, and neither did I, to be honest. Yeah. My best friend from uni, him and I were like brothers. Like, I respected him a lot as a man. And just the camaraderie that we had, we were very close, and that was a friendship I expected to probably last the duration of my life. But after the psychosis, I crashed into depression, and he was very confronted by that, and I never got to find out why. We never had a closing conversation. So I guess I never got closure about that relationship. He just kind of up and left, blocked me on social media, didn’t hear from him again. And that kind of loss is pretty devastating, especially when I guess this experience of psychosis really taught me who your friends are. And, you know, the ones that stick around are probably the ones that care the most about you.

But I had, my family supported me as well. They were incredible. At the time, I probably didn’t appreciate it too much, maybe wanted care in a different way. But looking back, I’m very thankful to have had so much support around me.

[00:13:33] Lucy: We’ve actually heard a lot of people say that they’ve lost a lot of friends when they’re going through something like that. Why do you think people drift away from people who are experiencing such a hard time?

[00:13:45] Guest: I think a lack of understanding, I guess, is my first response, but also maybe a protective factor. No, maybe some. Like, I remember in uni when I was around negative people, I kind of just distanced myself from them. I couldn’t have them in my life because it was bringing me down. And I guess a lot of my friendships were maybe more superficial than I thought they were. So, you know, it was okay for them to kind of move away and shift into their own life. But it was hard for me because that experience of psychosis, my life stopped. Everyone ran off into their careers, had a, you know, got married, had children, and I was back at square one trying to work out what does life look like for me? How do I get through this awful experience? So, yeah, life paused for me for, like, five years. And I would say only in the last year have I really started to bloom and to grow again.

[00:14:39] Lucy: I heard you speak about questioning how you got how would you get through such an awful experience, but how would you say you did get through that? Because one year is a long time to be in it.

[00:14:52] Guest: Yeah, one year is a long time. It’s interesting because obviously the western model is like, throw medication at it, subdue the symptoms. That didn’t work. A lot of the standard medications for my diagnosis didn’t help at all. So I was seeking professional help, but what was being provided wasn’t quite effective. Eventually, I just came out of the experience, and that felt like waking up as well. Like, the snap into psychosis felt like waking up. And then I remember snapping out of it and kind of being in hospital and being aware of myself for the first time in a year and being like, oh, I’m back. I can assess myself now. I can reflect. So, yeah, it naturally ended for me. I thought I was going to be in psychosis for a long time, and a year is a long time. But eventually I did come out of it and then I went into depression. It’s fascinating because the decline into depression was actually really helpful for me in the sense that the psychosis was this delusional, religiously grandiose kind of state. And then coming out of that into depression actually enabled me to pause and calm down and to really assess the experience and be more introspective than I had been previously and actually be aware of, you know, the experience of psychosis and the damage that it had caused in my life and then finally being able to examine that, investigate what had happened to me.

[00:16:22] Lucy: So depression actually gave you time for reflection?

[00:16:24] Guest: Yeah, it probably gave me too much time.

[00:16:27] Lucy: Too much time?

[00:16:28] Guest: Too much time, I think.

Yeah, I was depressed for about four to five years, and a lot of that was accompanied by, like, suicidality in the sense that, you know, if you’re  feeling depressed for so long, eventually you just want to escape. And unfortunately, the common thought is, oh, I should put myself out of my own misery, which is the thought that I ultimately had. And it wasn’t. It wasn’t that I didn’t want to be alive. It was very much, I want to be alive, but I want to be okay. If there was a switch, I could have flipped to be like, I’ll be happy again. I would have flipped it immediately. But I learn a lot. I learn a lot. And the experience was actually helpful. The first 21 years of my life was like I was on autopilot, you know, there was no emotional intelligence. There was no introspection or self awareness. And the beautiful thing about my depression was I had to navigate these awful emotions, but I had to work out a why I was experiencing them, what the causes were, and how do I mitigate these feelings or overcome them. And then that developed the self awareness. And it was the self awareness that ultimately got me out of depression.Well, there were a lot of things, but that’s one of them.

[00:17:50] Lucy: Can you speak a little bit more about how self awareness pulled you out of depression?

[00:17:54] Guest: Yeah. So I guess there are a few things that helped. Self awareness was definitely the development that I got from depression. Getting out of it was a little more challenging because sometimes you know why you’re experiencing something, but that doesn’t actually alleviate the experience itself.

So I guess when I understood where my depression had come from, my diagnosis and stuff, that made me feel a little more like, okay, well, there’s steps I can take to get out of this. So my first steps were psychology, psychiatry. And then, you know, I really doubled down because I didn’t know if I was going to get out of it. So I exercised a lot. I learned meditation, I tried reading. And in the end, I read for about two years straight. I read, I think, nearly 200 books in that time, and that pulled me out of it. And I think what it was, it was finding purpose. It seems like a really insignificant purpose, getting up and reading a book every day. But that was so different to what I’d been doing because I was stuck and trapped in this perpetual cycle of I feel awful, I want to die. And then just navigating that. But when I got to read a book, I was able to escape my own mind. So I’ve reflected on this a lot, and I think a lot of people like to escape their feelings, even people that haven’t gone through psychosis. For me, I recognized that my reading was like, positive escapism. Reading is quite a helpful and healthy thing to do. Maybe not 200 books in two years, but that pulled me out of it. And I think the thing that pulled me out was that I was making progress. Like, I set my goal, read 100 books in a year. When I achieved that, I was like, well, I can achieve things. I can give myself goals and reach them.

[00:19:49] Rachel: I mean, I’m a clinician, and so we hear a lot or talk a lot about purpose and its role in healing, but we often think about work or vocation, and that’s really just highlighted. Purpose can mean lots of things. Being able to set yourself goals, do something that health, you know, that gives you a space from the emotions that you’re finding hard, something else to focus on. It’s really lovely to hear that story. Thank you.

[00:20:19] Guest: No worries. My pleasure.

[00:20:22] Rachel: I think I heard you say back when you were telling us about that year that there was your help seeking led to certain things that weren’t very helpful. You know, there was lots of medications that didn’t really work for you and maybe some other things. Do you know what you would have wanted back then or something else in response to what you were going through?

[00:20:48] Guest: I think what I wanted was unrealistic. I really wanted someone to kind of be in the water with me whilst I was trying to stay afloat, because I feel like, you know, a lot of my family support and my friends were like, you know, kind of watching me struggle to stay afloat or, like, even drown, in a sense. What I would have wanted if I could have had it would have been, yeah, someone in the water with me, like a best friend that I could really just talk to about everything that I was going through, all of my thoughts, having, like, a sounding board for all of the things that I was going through. And I didn’t have that.

[00:21:26] Rachel: I think you said it was unrealistic. And what comes up for me when I hear you talk about someone in the river with you, is that what you said? in the water with you, is that kind of idea of witness?  Why do you think that’s unrealistic to have with ness when you’re going through something?

[00:21:48] Guest: I think it’s unrealistic in the sense that I may not have appreciated it even if I had it. So it’s almost a retrospective kind of analysis of what I would have wanted at the time. I don’t know if it would have been helpful. And it’s also unrealistic in the sense that from my experience, losing 95% of my friendship group based on that experience, I didn’t expect anyone to be with me all the time. But despite all of the supports that I did have, and there were extensive supports, the thing that really came, I realised eventually that it comes down to me. You know, my well being is my responsibility.

And unfortunately, one of the professionals in my life during my care said to me, oh, he’s unlikely to recover. That stuck with me for years. And I assumed that because my diagnosis was incurable and indefinite, I was like, well, I’m stuck with this for the rest of my life. There’s no chance of recovery. So I resigned myself to that idea. I thought, okay, well, this is me now. I’m gonna be unwell forever.

And then eventually it clicked in my head, if I may swear, fuck that, I’m going to recover. I want to take charge of my life. I want to restore myself in my own eyes and be the person that I want to be. And I always wanted to be who I was before, you know, optimistic and happy and confident and carefree.

And I did get that back, which I wasn’t expecting. But I’m also, like, 2.0, you know, like, I’ve learned more. I’m not on autopilot anymore. I’m reflective and introspective.

And if I had to do all of this again, despite, you know, almost ending my life and experiencing the weight and depth of psychosis, I would do it all again. And the reason I would do it all again is because it gave me who I am today.

[00:23:45] Lucy: You should be honestly so proud of yourself, because what that person said, that you’d never recover, that’s so damaging to try and write someone’s narrative for them, and not everyone would have the same motivation as you did and turn around and say, well, that’s not gonna be me. I’m gonna do things my way. You should be really proud of that for going with your intuition and what was right for you.

[00:24:12] Guest: I think my proudest achievement is surviving when I didn’t think that I could. I think that is my proudest achievement to date.

[00:24:24] Lucy: What would you say is your biggest learnings or takeaways from being in a state so unfamiliar?

[00:24:33] Guest: Wow.

My depression was kind of like this massive existential crisis for me. Before experiencing anything, I would have identified as an optimist and an atheist, and that was pretty much my entire philosophical identity. So coming into this crisis where I had all the human questions, you know, why are we here? You know, why am I here specifically? Is there a meaningful purpose to my life? How do I want to contribute to society? The big ones. And I think my biggest takeaway from that was I didn’t really find any answers, but what I did find was curiosity. And I started to develop the kind of core principles that make me who I am and the things that I look for in other people and the things that I try to uphold. And I think the four that I kind of settled on was kindness being the most positive way to navigate any relationship or interaction, even with strangers on the street. If you’re kind to them, they’ll probably remember that, and that could impact their day, and that may have a butterfly effect for the rest of eternity.

[00:25:39] Rachel: I love that.

[00:25:40] Guest: Yeah. And there’s like. I realised there’s, like 8 billion people on this planet, and if we all did one act of kindness a day, that’s 8 billion acts of kindness every day. Like, imagine how transformative that could be. The second would be curiosity, as I mentioned earlier, that innate human desire to question and challenge and kind of grow. And then the third and fourth would be self- awareness, which we’ve already kind of discussed a little bit. And the last one would be effective communication, which, admittedly, I’m not always great at.

[00:26:13] Lucy: So your whole experience and then going into that reflective period of your life taught you those four sort of pillars of your life, is that right?

[00:26:25] Guest: Yeah. I think it’s like BC in AD, right? I feel like my life has been divided into, like, pre psychosis and depression and post psychosis and depression.

[00:26:36] Lucy: That’s a great way of looking at it. I feel the same after psychosis, I felt like it was a second shot at life. It’s like life part two.

[00:26:45] Guest: Absolutely. Yeah.

[00:26:46] Lucy: So you spoke before about things that you did to help you. You spoke about exercising, meditation, and reading. Why was it those things that you chose?

[00:26:57] Guest: So I guess this was a lot of the professional advice that I was given that things like exercise can increase serotonin and those kinds of chemicals. And then reading was my kind of choice and purpose. And then meditation was passed down by my stepdad, who practices in Buddhism.

And really, for me, this was during my depression. This wasn’t during the psychosis. And I guess I tried everything because I really wanted to survive.

And I was like, okay, well, I have to try everything that I can to get through this. Otherwise, it’s the alternative, which would be the worst case scenario for everyone.

So I tried everything. And it wasn’t until I actually put in the effort to try different things that actually started to. I was like, oh, wow, they do help. You know, they didn’t help immediately. I found it really hard to exercise because I’d gained weight from the medications and that kind of thing. But when I did start to do things, it wasn’t immediately transformative, but over time, it amassed pride. I was like, okay, well, today I showered. I did one impossible thing I thought I couldn’t do. And then the next day, I was like, oh, go for a bike ride. Another impossible thing I didn’t think I could do. And then getting into that habit of achieving things each day made me really realize, you know, I can do more than I think I can do. Because, you know, some people may say, oh, well, you weren’t that depressed. And I’ll be like, well, you know, it was pretty awful and devastating. And, you know, I had no motivation to do these things. I was. I really didn’t want to do them. I didn’t want to listen to the professionals telling me that exercise was helpful because I was like, well, I’ve tried it before. It didn’t work, but I tried it again, and I tried everything again. I did the things I didn’t really want to do. And it took probably all of my willpower to actually do them. But they helped. Everything helped eventually, but it was my responsibility to kind of do this for myself, to take charge of my own recovery. So trying everything. I exhausted all options, you know, the meditation, the getting a routine again and even going to groups that headspace after years of not wanting to do them or maybe a year and doing all of these things for myself. Because at the end of the day, I’m like, well, this is my life. You know, I have potentially just one of these. So I kind of, like, owe it to myself to get better.

[00:29:34] Rachel: I guess I’m just sitting here wondering about where you found the willpower. At what point did you start to believe in life? Worth fighting for.

[00:29:47] Guest: This is pretty dark, but I will share it. So, after years of being depressed, I did make an attempt. And after that, I wouldn’t say I was happy that I survived, but I was like, okay, well, I did. So what does that mean for me? And then I challenged myself to. I was like, okay, well, either it’s gonna be that again or I really make the effort to get better. It’s an interesting question, because obviously that’s the answer that people will be looking for. My psychologist said to me about my anxiety. She said, okay, you feel like you can’t go out and shop. And she said to me, but you can. You can physically do that. It will cause you a lot of discomfort, and it’s awful, but you can physically go and do that. You can make yourself do it. And then I was like, I hate that you’re right, but you are right. So after psychosis and towards the tail end of my depression, it was anxiety that was the hardest thing to overcome for me because I knew why I was anxious, but I couldn’t work out how to solve it. My anxiety was like a physical nausea, like needing to vomit all the time. So that was, like, the last hurdle for me to kind of overcome was anxiety. And my psychologist was pretty transformative, you know, telling me that while you can do it, despite how uncomfortable it’s going to be, and then I started challenging myself, like, all right, I feel like I can’t do this. I’m going to do it anyway. And in the end, I realised my fear of the consequences of failing, pretty much. It felt like, you know, I was sincerely concerned with, if I try this, what if I fail? You know, what if I start to work again, but I can’t do it? That kind of mindset, that shift in, well, I can physically do it despite how awful it’s going to be, really helped.

[00:31:40] Rachel: And even though all of those small steps that you made contributed to some belief, maybe.

[00:31:47] Guest: Yeah, I think there’s this thing I do when I get stressed. There’s a video on YouTube called star size comparison. And it starts with, like, the moon, and it moves up to the different planets in our solar system, all the way up to the biggest star in the universe, and it’s huge. It’s like hundreds of millions or billions of miles across. That’s probably wrong. Don’t quote me. But it’s huge. And then they put the earth on it, and the earth is this tiny speck of sand against this massive goliath of a star. And I watch it when I get stressed because I’m like, it reminds me that I’m insignificant, but it also reminds me how significant I actually am. You know, the fact that I get to live this life and see the universe while I’m here and think about these great things that we get to think about reminds me that I shouldn’t care so much about the small things and not in a negative way, but in a, you know, it’s okay to not care so much and to try to navigate it anyway. Especially anxiety. That’s mostly when I would watch this video, is when I was really, really anxious and just remind myself that, breathe, you’re small. You’ve got this.

[00:33:01] Lucy: Very liberating way to approach life.

[00:33:04] Rachel: I just want to say I really enjoyed this conversation, and I’m so grateful that you’re with us today. We’d like to ask all our guests something about if they’ve seen or witnessed or experienced a person respond to distress. I wonder if you’ve got something to share about that.

[00:33:24] Guest: I do. I have an example that stuck with me for years now. There was a police officer, a woman, who responded to kind of a crisis that I was in. And she said to me, she was very authentic and genuine. And she just looked at me and said, kid, it’s gonna get better. She’s like, I’ve been through it. It’s worth it, you know, enduring it and sticking through it. And I didn’t believe her. You know, I was pretty hopeless and despairing. I was like, all right, whatever. You’re just saying this. But when I did recover and when I returned to wellness, I kind of remembered her conversation. I’m like, God damn it, she was right.

And I guess if I could instill any hope in other people, it would be as insurmountable, unsurmountable as it feels. It is worth enduring. And I often reflect, you know, if we look at, like, the purpose of life as a just a general thing, you know, it’s to survive, to reproduce and evolve. And I kind of thought, well, in a more human sentiment, it is to endure, to love and to change.

And I think about that a lot because, you know, I feel like we can get stuck, but change is ultimately how we get through. And enduring where we have to and spread love in a very simple way.

[00:34:44] Rachel: Endure love and change. What a beautiful way to finish our conversation today.

[00:34:54] Lucy: I just think you have so much to offer, and you do give so much hope to a lot of people, and that’s very special. So thank you for spreading that message today with us and anyone that’s listening.

[00:35:09] Guest: Thank you.

[00:35:16] Rachel: Okay. Well, Lucy, I’m keen to hear what you thought about that conversation because there’s so many things on my mind that I’ve noticed. I’ve thought a lot about throughout the talk, but also still sitting there now, what’s sort of on your mind after listening to this guest?

[00:35:35] Lucy: I loved this conversation. There’s been so many things that have stood out. I think the thing that I’ve been thinking about is how they were speaking about depression and how that period in their life was actually really helpful. They described it as being helpful because it gave them time to think about what had happened during the psychosis and gave them time to just pause. They spoke about how they arrived at the four pillars of their life and what was really important to them. They mentioned kindness, curiosity, self- awareness, and effective communication, which I think is just such a beautiful way to live. And, you know, we’re so busy in our everyday lives that sometimes we don’t get the opportunity to pause. So you can see that, you know, although the depression was really tough, it did serve a purpose in giving them a break. So I found that really fascinating. What were some of your takeaways?

[00:36:27] Rachel: Well, there was so much. I mean, the four pillars were pretty inspiring, actually. And the other thing that is really on my mind when I think about this conversation was just the importance of language or, you know, the power of words. And, you know, in my practice, in the way that I work, we talk a lot about holding a not knowing position, you know, and the importance of uncertainty. And although that can feel, you know, hard at times to sit in the unknown and to hold this position of not knowing, it actually allows an openness, whereas a knowing position or holding certainty about things just can close things down. And I was just thinking so much about the potential impact of hearing someone say, you’ll never recover from this. You know, how that could have really changed the outcome for this person. Our guest was able to really work against that and turn that around. So I was very inspired by this person’s ability to be able to take charge of their own journey and where they wanted to be and the life they wanted to live. This person’s ability to speak and talk about some really complicated topics and make them really understandable has made our conversation with them really easy. So I just want to say thanks.

[00:38:09] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

Jesse works at LifeConnect who offer suicide awareness training for the community. To get in touch, head to their website https://www.neaminational.org.au/services/lifeconnect/ or email them at lifeconnect@neaminational.org.au

Come and listen with:
Lucy (She/Her) – A big fan ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – The message of suicide

[00:00:01] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Lucy: In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] Rachel: discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] Lucy: The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] Rachel: Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] Lucy: Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question how can we respond to distress with greater compassion and humanity?

[00:02:17] Rachel: This is a conversation with Jesse about suicide. Jesse shares his own experiences of suicidality and offers different ways we can have more compassionate conversations about it. We think about suicide as a natural physiological response to distress that can contain a message for an individual. We explore some of the misunderstandings around suicide, the importance of language, and allowing people time and space to process and heal.

Hello Jesse, welcome.

[00:02:46] Jesse: Thanks for having me.

[00:02:47] Rachel: Yeah, you’re welcome. We’re really excited about our chat today. Would you mind telling us a bit about yourself and maybe what brought you here to the episode?

[00:02:55] Jesse: Yeah, for sure. I work for a service with Neami National, which is a mental health. Our service is called Life Connect and we’re a suicide awareness service. So we give trainings and things to clinicians and mental health workers and just general community sometimes as well. I’m a lived, experienced practitioner there, so I have a lived experience of suicidality. We’re actually a whole lived experience team at the moment. You know, we’ve got people who might be bereaved by suicide, people who’ve had attempts, and people who have supported family members through that experience as well. So we get a really good, vast knowledge and input into our content and what we talk about as well in that way. So. Yeah.

[00:03:38] Rachel: Wow, what important work you’re doing.

[00:03:40] Jesse: Yeah, it’s good. It feels nice to do.

[00:03:44] Rachel: I know you’ve listened to some of the episodes, so you know that we ask this question at the start of every episode. Have you got a story that you can share about a disproportionate reaction that you or someone else you know might have or have had?

[00:03:58] Jesse: Yeah, well, yeah, I was going to talk about something I do or that I just have that goes on for me that I can’t get my head around because it doesn’t make logical sense to me and it’s just a part of my life that I have to live with. But that’s like. I’m just ridiculously scared of wasps.

[00:04:15] Lucy: Oh yeah, fair enough.

[00:04:17] Rachel: They are scary.

[00:04:19] Lucy: I’ve heard that they track you.

[00:04:20] Jesse: That’s what it feels like.

[00:04:22] Rachel: Is that correct,  do they track you?

[00:04:24] Jesse: That’s my experience.

[00:04:24] Lucy: That’s probably something I got told when I was like twelve and it’s just stuck for the rest of my life.

[00:04:29] Rachel: But I think I’ve just adopted Jesse’s disproportionate reaction.

[00:04:34] Jesse: Sorry. So, yeah, just whenever there’s a wasp around, I’m running away, I’m squealing. I’m just doing all that kind of stuff. That’s pretty embarrassing for a full grown person. The other thing is I’ve been stung by wasps and it’s not that bad. Like, it hurts, but it’s not like debilitating or anything. It’s like, I don’t. And it didn’t help. I was just like, nah, I still feel the same way. Yeah. It wasn’t exposure therapy or whatever.

[00:04:58] Lucy: Yeah.

[00:04:58] Rachel: See, it’s a good example of disproportionate being very subjective.

[00:05:04] Jesse: Yeah.

[00:05:04] Rachel: Because to me that seems pretty proportionate.

[00:05:07] Jesse: Oh, really?

[00:05:08] Rachel: Running away in screaming.

[00:05:09] Jesse: I don’t think the teasing makes it feel disproportionately.

[00:05:12] Rachel: Right. Yeah, yeah, yeah, yeah. Thanks for sharing.

[00:05:18] Lucy: We’re talking about extreme states. We wanted to ask what extreme states meant for you in the context of your work and your experiences.

[00:05:26] Jesse: Yeah, it’s a really interesting question. I really like the question to begin with. It raised a lot of kind of conflicting thoughts for me. As well. When I’m talking about, like, the work that me and the team that I’m in do around suicidality, it definitely is an extreme state and a really distressing place to be in, for sure.

There’s also something we talk to in the training as well, that it’s a… We never know quite how the word this, but it’s. It’s a. It’s a natural, like, physiological response to distress as well.

[00:06:00] Lucy: Can you say a bit more about that?

[00:06:02] Jesse: Yeah, so, like, the way that I’ve been thinking about it recently in particular is like that. It’s essentially like biological messaging kind of thing. So it’s. It’s trying to tell us something or trying to tell the individual something. And I see anxiety and depression as the same kind of thing as that. Like, these are messages that we’ve kind of labeled as disorders as well. That’s more about. Yeah, like, the pain that somebody’s feeling or the distress that they’re in. And I think suicidality falls into that camp as well. That’s where there’s a bit of conflict for me, but it’s like, it’s an extreme place to be. At the same time, we’re trying to normalize that experience and validate that experience for people. So it’s a little bit in, it’s got a foot in both camps, in a way. And that’s often what suicidality is like. It’s really gray and really, there’s a lot of nuance that you need to get into. My suicidality kind of really became more, I don’t know what the right word is, like, more intensified or whatever when I was. Cause I have, like, an anxiety disorder, but that ended up into what they call, like, panic disorder as well. So was that real intense physical sensations of fear and anxiety and that kind of stuff, and then you become afraid of the fear, and then you’re getting those same feelings and it just becomes all the time, essentially, it’s like a panic attack all the time.

So for me, my, that was kind of the extreme state that kind of more caused that intensification of suicidality. Yeah. Suicidality can kind of come about from a lot of different angles and factors and things. But, yeah, for me, it was that real, you know, I just can’t take these sensations anymore. Like, it was like a real escape kind of thing.

[00:07:55] Lucy: Yeah.

[00:07:56] Jesse: Again, yeah, it’s quite complex and has a lot of different sides to it.

[00:08:01] Lucy: What do you think is some of the things people get wrong about suicidality?

[00:08:07] Jesse: Well, they get wrong. So there’s often a lot of, I guess, fear from the person who’s in that more supporting role as well. There’s a lot of discomfort and it’s like a scary, uncomfortable thing to talk about. Like, we’re never saying that’s not the case. Like, that fear and discomfort that comes up from that person who’s in that supporting position, I think is felt by the other person who maybe is in high distress and needs that help. So, you know, we’re kind of in our trainings that we do and things, we’re kind of just asking people to start looking at that essentially within themselves.

As a clinical worker, as a family member, as a parent, as a whatever you are, to whoever. It’s just something that we notice a lot. And we think it plays into the, you know, the stigma and the taboos that are around suicide as well, in terms of it’s just not talked about very comfortably by anybody, and that’s understandable. But then we’re also saying we do need to work through that, though, because people are losing their lives, obviously, so. And what we find is pretty much every room that we’re in there is lived experience as well, you know, of people have been through it because it’s so common. You know, there’s the, like nine people a day statistic that.

[00:09:24] Lucy: Is that just in Australia?

[00:09:26] Jesse: Yeah, that’s the Australian statistics. Yeah. So, you know, and I think. I think it’s like maybe for every person who does die by suicide, there’s like maybe 200 other people who were affected by that as well. So we’re talking about huge numbers of people and then people who would have overlap and things. So we’re really trying to be mindful of that when we go in and talk about this stuff as well because, yeah, people have often had experiences around suicide themselves. It’s just really that wrapping your arms around people and just, just trying to understand everybody’s experiences as well.

[00:10:00] Lucy: It just shows how important the work is that you’re doing. And, you know, you’re probably part of a bit of a changing culture as well, of starting these conversations.

[00:10:11] Jesse: Yeah, we hope so. I guess one of the key things that we try and talk about is that, like, at a bare minimum, like, just try and have a conversation still. You know, there’s those myths around. You might put the idea in somebody’s head and all this kind of stuff. It’s like, we know that’s not true and we know it’s protective to have conversations. So at the very least, like, let’s just try and do that.

[00:10:33] Rachel: Are there other myths that you try to bust or?

[00:10:36] Jesse: Yeah, there are a little bit. I think a big one is the, like, suicidality only comes from mental illness and probably more specifically depression when it’s often, you know, big life stresses that might, you know, cause somebody to take their life. Like, we know relationship breakdowns are a big one as well. So.

[00:10:57] Rachel: Financial problems.

[00:10:58] Jesse: Yeah, financial problems, yeah. So it’s just those external stresses are often actually people’s tipping points. Definitely not saying. It’s not a potential thing that can come from somebody who’s, who has a mental illness. I can talk about this without being like, like sounding like I’m fear mongering, but it just really doesn’t discriminate.

[00:11:21] Rachel: No, I don’t think you’re fear mongering.

[00:11:22] Jesse: You know, so, yeah,.

[00:11:24] Rachel: I think you’re talking about the human experience.

[00:11:25] Jesse: Yeah, it is, part of the human experience.

[00:11:26] Rachel: Yeah. And I think, you know, even just mental health difficulties don’t pay enough attention to those things.

[00:11:34] Jesse: Yeah.

[00:11:34] Rachel: Relationship breakdown or illness or finance. You know, there’s the social determinants of well being or ill health.

[00:11:43] Jesse: That’s my experience as well, of, like, my lived experience is very much of, you know, I was like, just like a middle class young dude who just, I thought everything was fine. And again, it’s just that lack of education thing. Like, I definitely didn’t know about suicidality or anything like that. Like, not. And you know what it is, but you don’t know the experiences that people have and the differing experiences and where it can come from and that kind of stuff.

[00:12:11] Lucy: I was wondering what it’s given you. Being a peer worker of someone who’s had lived experience and now working with people who are going through that, is that been a big change in your life?

[00:12:24] Jesse: It does change what you’ve been through. Well, for me, I should say, for me, it’s changed what I’ve been through into something that’s a lot more like, I’ve gotten a lot of purpose out of it now because after I, I was in hospital and then I just spent like, four years, like, my dad has a farm. I just spent four years working on his farm, just like out in the, in the hills doing that.

[00:12:49] Lucy: How was that?

[00:12:50] Jesse: So, yeah, it was good, but I didn’t like, it’s hard physical work. I didn’t like that very much, but it was really good. Like, it was a great opportunity for me to kind of just, you know, I was so dissociative through that time. It was like doing that physical work actually got me back into my body a bit and all that kind of stuff. So it was good in that way. It was just low pressure as well. Like, low pressure. I could just turn up when I wanted to.

But, yeah, it was a bit like, it felt like a huge risk or something for me to kind of go into this work in the sense of, like, it’s really hard in lived experience work. Like, you don’t know when you’re ready, you don’t know when you’re not. Like, it’s a bit. It’s pretty ambiguous of like, yeah, that thing I was talking about before, it’s like, well, am I recovered or am I still doing it? Or, like. Like, I didn’t really go back to what my life was before in a way. Like, I really eased into it. So I see, yeah, a lot of situations where people are, like, just thrown back in and I think, like, time is such a big part of that healing or recovery as well. Like, not really like that time heals all wounds kind of thing, but more like, it’s just not linear. Like, you need. You might have a spurt of like, okay, I feel like I’m getting better. And then it just stops for, like, six months and you’re like, what’s going on? I can’t. I’m stuck. The expectations around when people are back to their selves or back to work or whatever, the pressures around that are just ridiculous to me.

[00:14:26] Rachel: Sorry. It does come up a lot, you know, around the flawed-ness of the word recovery.

[00:14:31] Jesse: Yeah.

[00:14:31] Rachel: You know, because it does imply we’re going back to something.

[00:14:35] Jesse: Yeah, yeah.

[00:14:37] Rachel: Well, it’s not implying it’s what it means.

[00:14:39] Jesse: Yeah, it does.

[00:14:39] Rachel: You know, recovering a part of yourself or your life.

[00:14:43] Jesse: Yeah.

[00:14:44] Rachel: But healing’s got a different.

[00:14:46] Jesse: It does, yeah.

[00:14:47] Rachel: Different meaning to me.

[00:14:49] Jesse: Yeah. I did hear one definition of recovery that I really liked from what’s his name. It’s that trauma and addiction specialist. Gabor Mate. Yeah. He was like, yeah, recovery means to find something again. And he was talking about in the sense of, like, finding your authentic self again. So, like, the person who you’re not really putting on a facade or a mask, like, you’re just being yourself and being really accepting of yourself and compassionate towards yourself and that kind of thing.

[00:15:20] RachelOh, that makes sense.

[00:15:21] Jesse: Yeah, I like that one a bit better.

[00:15:30] Rachel: Jesse, what I’m wondering about if your thoughts around organisational or macro factors that really get in the way of people being able to respond, professionals or otherwise, with people in that kind of distress.

[00:15:46] Jesse: Yeah. I do have some thoughts on this. Firstly, I’ll say that’s how I do see it. I do see it as, like, system issues. And I don’t think people are, like, trying, like, trying to be dismissive or, like, not form a connection with somebody. I think it’s just the way that this, these systems kind of work at the moment. But my opinion is, is like, you know, things like risk assessments and all that kind of thing around, in particular around suicide, they’re just, I feel like they’re becoming a way that we try and predict somebody taking their life, and that’s impossible to do. Like, it’s. You just can’t predict that. And it just feels a bit to me like we’re kind of essentially wasting time and resources trying to get this information, to write it, like, to fill in a form and that kind of stuff. Like, I think, you know, if I came to you and I was like, I’m having a really hard time, like, you, if it was normal life, like, you wouldn’t get out of form. You know, like, it’s just not how we work as humans when we’re interacting. Like, we wouldn’t get out of form and be like, well, I have to fill this out now. Like, it just doesn’t make sense in that way, even to me. I was reading a research paper, and there was a bit of a heartbreaking statistic to me in there, which was, I think it was two thirds of people who present to ED or whatever it was, who get categorized as low risk end up taking their lives.

[00:17:13] Rachel: Right.

[00:17:14] Jesse: In my experience, when I ended up, because I was in the psych ward for, I don’t know, a week or so, and I didn’t tell anybody in there that I was suicidal. Because, like, I didn’t. I just didn’t know what would happen if I did. Essentially, it was the main fear there, you know, that I would have been in the low risk category because of, I would have said no to that question. So there’s just a lack of trust. And I think that for me, that comes down to, yeah, we are just got the clipboard form, and it just feels also medical and that kind of thing. Yeah, I do think the way that we’re doing things has a great deal of potential to cause harm, and that just doesn’t feel good enough, really, to me. You don’t need to drop everything and go to the emergency department, is what we would say. We, you know, like, you just sit there and try and hear what’s been happening for them or to them, you know, to try and get a bit of understanding also, just to let them get that off their chest. Sometimes when people get it off their chest, you know, if we’re talking about the medical model, they might go from a high risk to low risk in that conversation. So we can’t predict it in that way.

[00:18:24] Rachel: But I also wonder about, from an organizational perspective, it kind of reflects this idea that services are responsible to make sure, yeah. Someone doesn’t end their life, and, you know, and if they do, there’s a sense of responsibility or blame.

[00:18:42] Jesse: Yeah, for sure. And this can be a bit of a hard thing to say or for people to hear, but it’s like, I don’t know, like, it’s not our decision at the end of the day as well. You know, like, we do need to give people their autonomy and that kind of thing. And, you know, I don’t think this, like, the challenge of suicide is going away, away ever. You know, so we need to just, again, that kind of panicked intervention mode is really quite a, I think it’s quite a discombobulating place for the person in distress to be as well, when other people are, like, panicking around you and being like, we’ve got to do this, we got to do that. Like, you need some steady heads around you and, like, some calmness and, like, people to just listen to what you’re saying and validate it.

[00:19:30] Rachel: I guess what I’m hearing you say is presence.

[00:19:34] Jesse: Absolutely.

[00:19:35] Rachel: And connection and compassion is kind of really more important than.

[00:19:42] Jesse: It’s definitely more important for the person who’s struggling. Yeah. And I just think that should be the priority at all times basically.

[00:19:50] Lucy: I was just thinking before how we were talking about how important it is to listen to someone and let them express what they’re going through. But if you’re really worried about someone and they’re not talking, how do you approach that conversation?

[00:20:07] Jesse: Yeah, this is, this comes up a bit, this kind of thing.

It’s really tricky. It’s the answer, essentially. And I think this is really hard because it takes a lot of patience and quite a bit of trust in somebody who’s saying, I’m suicidal. You might ask, hey, are you thinking about suicide? And they might not want to talk about it. We’ve heard of people getting angry as well. Like, how dare you think that that kind of thing comes up as well. But what we hear more often than not is, you know, maybe a week, maybe a month later, they’ll.

They’ll know that you’re the person who is up for the conversation when they can have it essentially, you’ve identified yourself by asking that question as a. As a safe, caring person who wants to chat about this, you know, so it doesn’t.

That’s where I think there’s that, you know, we need to do something right now kind of thing. There definitely are situations like that, I should say, where people just need help right away, and it’s quite dire, but a lot of the time, it’s not that, actually. And there is a bit of time to work with. It doesn’t have to be so rushed. And that’s where we’ve got to put trust in somebody that they’re gonna, you know, stick around for a period of time and work on this and, you know, hopefully come back to you and be like, you know what? I am thinking about that. You know, but it might be sometime later as well.

But that’s why we’re saying, ask the question. Yeah. If you’re noticing, you know, behavioral changes or things or that kind of thing, like, go ahead and ask. Because even if they’re not up for it.

[00:21:48] Lucy: Yeah. So even if the conversation feels a bit hard or it feels a bit clumsy, it’s better to have it than not.

[00:21:54] Jesse: Yeah, definitely. Yeah. Yeah.

[00:21:56] Rachel: I really liked how you just talked about trust then, because, you know, I, you know, it feels good to me. But oftentimes when you. When you hear the conversations about trust, it seems very one way. It’s expecting the person in distress to trust the person that they’re seeking help from, but it doesn’t seem two directional or bi directional. So I really liked you talking about that.

[00:22:23] Jesse: Yeah.

[00:22:24] Rachel: That it’s also about trusting that direction.

[00:22:26] Jesse: Yeah. Expecting them to get better, essentially, for themselves in particular.

You know, I think a lot of the time, there’s an expectation around people who are going through a hard time or, you know, might have repeat episodes of mental illness or in, you know, more intensified times of that, that there’s. There’s just no way they’re ever coming back or something like that. Like, it’s.

Again, it’s just not true. There’s heaps of people who live with managing suicidality on a daily basis, and then they live, you know, for a normal lifespan kind of thing. So it just doesn’t really work like that. It’s not like a. You feel suicidal and then you act on it straight away. Like, it’s not. It doesn’t work like that very often at all, actually. I think those things where we’re like, we got to fix this right away is more that person bringing in their own fears around that situation.

[00:23:21] Rachel: Mm hmm.

[00:23:22] Jesse: Yeah.

[00:23:24] Lucy: I was wondering if we could chat a little bit about some of the outdated language that we hear in terms like committed suicide and sort of why we don’t use phrases like that anymore. We don’t use language like that anymore.

[00:23:38] Jesse: Yeah. Um, for sure. I think the, you know, I think the main things that we talk about. Yeah. Are those, you know, committed suicide, and it did used to be a crime to take your life and, you know, definitely was a sin in religions and things like that. So it just has that kind of negative stigma to it around you’re. You’re a criminal or you’re a bad person. It’s like, it’s an immoral thing.

Yeah. It’s just, it’s more about thinking about where these things come from and.

[00:24:07] Lucy: Yeah.

[00:24:08] Jesse: why they might cause somebody to kind of internalize that stigma more, which, again, means they probably are less likely to reach out for help, and then the other ones are around attempts, like the successful or failed suicide attempt as well. Like, again, we’re just, just wanting to try and stay away from using language that has, like, positive or negative connotations, like just keeping it more factual to what happened. Like, just suicide attempt is fine, you know.

Yeah. Taking your own life instead of committed suicide, just really honoring that person with Just factual language around it.

[00:24:44] Rachel: Without the moral laden.

[00:24:49] Jesse: Yeah, yeah. Like, putting judgment on it, essentially.

[00:24:52] Rachel: Yeah, yeah.

[00:24:53] Lucy: We don’t really think about what we’re saying or the history of where it comes from. It’s just so embedded into our everyday language.

[00:25:00] Jesse: Yeah. And it’s in media and tv and movies and everything.

[00:25:12] Lucy: What do you think is important to know based on your own experience about suicidality?

[00:25:17] Jesse: I think it is really individual for each person, and I think that’s where I’m hoping, you know, lived experience will play a big factor in how we approach suicidality as well. Like, learning from that. I know, for me, suicidality or any kind of distress that I’m feeling, I really just need to talk about it and get it out. It’s almost like that, you know, just, Blegh, big hole, spew all that information out and all those feelings and just, yeah. Having somebody just listen and take it on and try and trying to hold space for that, like, the ambivalence that people experience with these massive feelings as well. Because, you know, when I was going through all of that really intense time, like, I wanted to escape. I wanted to get out of those feelings that I was having. But then also I was just like, I’m really afraid of dying, though, as well. You know, so it’s like those two things that they don’t really make logical sense together in a way, but we very much can experience things like that as well.

[00:26:24] Lucy: Jamie, who came on the podcast, he did, like, a reframe when he asked one of the young people he’s working with, he said, do you want life to end or life as you know it to end? And I’d never heard that before, and it kind of blew my mind. I was like, that’s such an interesting reframe.

[00:26:41] Jesse: Yeah, definitely. And that’s why, like, I don’t know. For me, yeah, it’s just so different for everybody. But for me, that kind of happening and the kind of, I don’t know, like, I got my ass handed to me and that period, it felt like I just was, like being in a psych ward. Like, you’ve kind of lost, like, in your mind, you’ve lost everything, essentially, as well. Like, I’ve lost all my livelihood. Like, I’m only allowed out of here an hour a day or whatever. Like, it’s that kind of thing. And you’re like, it’s just all over. And that ends up, for me, that ended up being the best thing that could have happened, though, because I was, you know, just. I was on a path where I was just disregarding all of this stuff or in denial, really.

So, yeah, kind of getting that experience of, like, you don’t have a choice. You have to stop and. And work on this. Like, my. You know, my bodily systems were just like, nah, we’re shutting you down.

[00:27:41] Lucy: Yeah, right.

[00:27:41] Jesse: And that ended up being so good because it’s just. My hand was forced. I had to do something about it.

[00:27:48] Lucy: That’s sort of what you meant at the beginning of. It’s a sign that you need to change.

[00:27:53] Jesse: Yeah. It’s a message about your current circumstances are not working for you. And that’s what you were just talking about. It’s like, yeah, that’s. That’s a really good way of saying it. Like, essentially, nobody really wants their life to end. It is their life as they know it. It’s their circumstances that they’re in. It’s the pain that they’re feeling. It’s these kinds of things that we are trying to get away from.

[00:28:18] Rachel: Yeah. It’s really a wish for death, is it?

[00:28:21] Jesse: Yes.

[00:28:21] Rachel: It’s much more about unable to tolerate the continued suffering. And how about people around someone in distress or experiencing suicidality? What have you learned from your own experience or in your work that they need or what helps equip them?

[00:28:38] Jesse: Well, yeah, one part of it that I’ve already talked about is definitely that just examining your, your own discomfort around the conversation, I think, is a really big part of it. But then I think also, you know, we’re very quick to, I guess, try and jump in with solutions or reassurance or all that kind of stuff. And, yeah, one of our messages is just like, try not to do that.

Like, just, again, just sit and listen. Like, you don’t have to have input. You don’t have to agree with what people are saying. Like, all of this stuff, like, just try and, yeah, practice empathy and, yeah, just the act of trying to understand where they’re coming from is really important, I think. But, like, some of the, when I was going through really hard times, like, I remember one time in particular where I was having a really intense, panicky time. And at that point we didn’t actually know what was going on with me. So it could have been something physical as well. Like I was getting light headed and blah, blah, blah. But we called an ambulance one night to come and check on me because I didn’t know what was going on. And everybody’s doing stuff and, like, trying to get that. And my friend just came, put his arm around me and just sat there and I just broke down then. And at the time, didn’t think much of it apart from that. But, like, looking back now, I’m just like, I don’t, I don’t remember much from that time. I really remember that moment for some reason. So it’s just that being there, that’s kind of it. There’s just no real formula. It’s just like, just be there as a person.

[00:30:22] Lucy: It’s been an amazing chat, Jesse, but before we let you go, did you want to tell us about how people can find life connect or.

[00:30:30] Jesse: Yeah, so we are kind of based in Heidelberg in the east of Melbourne. And we cover from, you know, all the way up to Whittlesea, down to like, Yarra Glen way as well. So we’re covering a big, big area and kind of the east of Melbourne. Neami also has other suicide prevention services and trainings around the country as well. Essentially, you can just search for life, connect, and there’s a phone number or probably emailing in is best. And yeah, you can get in touch to book us for really any purpose. Just if you want to have a training session around suicide, it doesn’t really matter who you are. You don’t have to be a mental health professional. We can do it for, you know, we can do it for carer groups. We could do it for parents, like, as we can adapt and kind of work with any group. Yeah. If you get in touch with us, we can put you on a mailing list. We have these events we call single stays, which is a funny name. But that’s really, we do the training, and anybody from any walk of life can come along. It’s just an open day for anybody to turn up to the training, so.

[00:31:38] Lucy: All right, Jesse. Well, thank you so much for coming in today.

[00:31:41] Jesse: Thanks so much for having me.

[00:31:42] Lucy: Thank you for being someone that’s willing to have hard conversations that a lot of people find very difficult to have. So, yeah, you’re doing amazing work.

[00:31:51] Jesse: Thank you. Thanks, both of you.

[00:31:58] Rachel: Wow. Luce. I have thought so much about this conversation with Jesse. You know, I’ve been in this area for a long time, and I can’t really remember over time where these kind of conversations would have been possible.

So it’s really, you know, kind of, it makes me feel good.

[00:32:17] Lucy: Yes.

[00:32:19] Rachel: That suicide is becoming less secretive or shameful or taboo and something that can be explored and that there can be a meaning for someone in their life about it.

[00:32:33] Lucy: It gave so much hope, and he reframed so many things and put to bed so many myths.

I walked away feeling like I could open up those conversations about suicide with people.

[00:32:46] Rachel: What do you think it was about the conversation that gave you more confidence? Was it about the language? Cause Jesse talked a lot about how we use language in this space.

[00:32:55] Lucy: I did love the takeaways from the language, but I think the thing that stood out for me the most was how Jesse saw suicidality as a message, a biological message that could be alerting someone that things are a bit off, and maybe something needs to change. And I think that’s what we think about sometimes when we think about something like anxiety, it’s like, oh, you’re feeling anxious. Maybe your body’s trying to alert you about something. But we don’t always see suicidality like that. And I think that just makes so much sense to me.

[00:33:31] Rachel: Yeah, you know, we talk a lot. Well, we have talked a lot. I think, about fear based practice, and that was something that came up in Jesse’s talk with us. But what more came up was courageous practice.

[00:33:45] Lucy: Yes. Also, how he was saying, sometimes you need to put trust in the individual, that they’re gonna get better for themselves.

[00:33:53] Rachel: I think courageous practice is exactly what you just described. You know, having belief and trust in an individual knows what’s best in their life and giving people the opportunity to work that out. And, you know, fear based practice means that we can’t tolerate that and we end up taking over someone’s life or intervening in the best intentions.

But, you know, it’s probably in response to the fear that we feel rather than what might be best for that person. You know, I really just am glad that there’s people, practitioners, services like Jesse out there having conversations like this.

[00:34:39] Lucy: Yes. Thank you so much for coming on, Jesse.

Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college

Check out Mary’s Book here: https://www.madnessmademe.com/

Come and listen with:
Lucy (She/Her) – A big fan of cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – A difficult gift

[00:00:01] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Lucy: In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] Rachel: discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] Lucy: The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] Rachel: Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] Lucy: Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question how can we respond to distress with greater compassion and humanity?

We sat down to chat with Mary O’Hagan, who’s currently the Executive Director of Lived Experience in the Department of Health in Victoria. Mary shares snippets from her memoir, “Madness Made Me”, and speaks about how value and meaning can be derived from experiences of madness. We ponder what it could look like if communities looked after each other and created space for people in distress.

Alright, Mary, thank you for coming in, joining us, I was wondering if you could share it just a little bit about yourself, what you’re passionate about, anything that you feel like you want the listeners to hear.

[00:03:00] Mary: Yeah, so I guess the key thing listeners might want to know is that I have my own lived experience of mental distress, and that occurred at a fairly discreet time in my life between about the ages of 18 and 27.

I was pretty involved in the mental health system for most of that time, and it had a hugely disruptive impact on my life. Since then, I haven’t had any major distress, and I’ve been working in the mental health area trying to bring about the kind of change that I thought was necessary based on my experience of using services and just on my general experience of mental distress and of the way that society and people who are looking on respond to it.

[00:04:00] Lucy: Sounds like the perfect person to have on the podcast, then, because that’s what we’re trying to do. That’s what it’s all about.

[00:04:07] Rachel: Mary, I think we’ve kind of let you know about this, but we try to ask all of our guests a bit of a starting question, which is a bit different to talking about extreme states, but we try to think about how different people might have disproportionate reactions to events or things that happen in their life. And we’re wondering if you’ve got a story about something like that.

[00:04:32] Mary: Yeah, well, I can flare up quite a lot.

I don’t do it that often. I probably did it more when I was younger. I flare up when things like when the computer is not working, I can start yelling at the computer.

[00:04:48] Lucy: The spinning wheel of death is the worst thing.

[00:04:50] Mary: Yeah. And when I’m on the phone to the bank and I’ve been waiting for 45 minutes and I say, I want some help with something, and they say, we can’t help you, I can get a little bit heated at those moments. So, yes, I do have disproportionate responses, and it’s one thing that I’d really like to change about myself if I could, but it’s very difficult because I find this flare up actually happens very quickly before you actually have time to think, I guess. Yeah, it’s kind of very quick and very quick to dissipate as well.

[00:05:38] Rachel: So it’s hard to interrupt when it’s..

[00:05:42] Mary: Yes, I think it is very hard to interrupt. In fact, if I took a really concerted effort at doing that, I might be able to, but it doesn’t really happen often enough to do it, and it hasn’t had a big impact on my relationships. My partner doesn’t like hearing me go on about the computer or the bank or whatever in the next room very much. But no, it hasn’t been hugely disruptive to my life, but it’s something that I’d really quite like to be able to modify, among other things, about myself.

[00:06:23] Rachel: It’s pretty human, though, don’t you?

[00:06:24] Mary: Yeah, yeah, it is.

[00:06:28] Lucy: Mary. So we’re chatting in this podcast about extreme states, and that means different things to different people. I was just wondering what it meant for you, if it had any meaning at all, what comes to mind?

[00:06:43] Mary: Well, I guess in my life you can be in extreme states when you’re dreaming.

[00:06:49] Lucy: Yeah, actually that’s a great point.

[00:06:51] Mary: And in fact, someone once said to me, well, people get psychotic every night when they’re dreaming. So I think that’s quite an interesting take on it. I think I’ve been in extreme states when I’ve been in grief or when I’ve been in a state of psychological injury. Obviously, that sends you into a state that is more extreme than your day to day reality. And then I guess the big experience of extreme states I’ve had was that those nine years when I was experiencing my existential crises, major mood swings and psychosis.

[00:07:43] Lucy: Was that something that you would want to talk about?

[00:07:46] Mary: As in, oh, yeah, talk about it. I’ve spent my life talking about it, so it’s no problem talking about it. Yeah.

[00:07:52] Lucy: What was that like? Nine years is a long time to be in an extreme state.

[00:07:57] Mary: Yeah, well, I was in and out of the extreme states. I wasn’t in them constantly for nine years.

[00:08:05] Rachel: Can I just ask, before you tell us more about that, Mary, I wonder what you think about the use of the term extreme states and as an alternative to other ways we might describe these experiences.

[00:08:17] Mary: I quite like the term extreme states. I find mental illness a problematic term.

[00:08:26] Rachel: Why is that?

[00:08:27] Mary: Because the idea that this is an illness is just one model or one way of understanding these extreme states. And I think that people really need to be able to decide for themselves what having their own explanatory framework or their own understanding of what the experience is and why it’s happening. Unfortunately, once you get into the mental health system, you’re told this is what you have, and there isn’t much opportunity often, for people to explore other ways of understanding it.

[00:09:15] Rachel: I think I heard you say at the start that you’ve been working for many years now trying to cause change in the system. Is that kind of some of the changes you’re trying to see happen?

[00:09:28] Mary: Yeah, I think really, in a way, the change in the way services and society respond to people at some level is based on how they understand the experiences that people are having or the behavior they are showing. And so I think it is quite important that we challenge the way the clinical worldview and society have viewed these experiences, because that kind of becomes the fundamental platform on which all service and societal responses are built, in the west at least, and actually in many other cultures, madness or whatever you want to call it, has been misunderstood, stigmatized, and people have experienced quite a lot of discrimination. The reason for that goes to the way people understand those experiences.

Now, for instance, in Maori culture, and you probably tell by the way I speak, I come from New Zealand. There is a term called matakite, which is really loosely translated as a difficult gift. And it’s used to describe a series of experiences which might include psychosis. And in that translation, you can see that there is something positive in that experience, in the cultural understanding of that experience.

And when you have some, but an understanding, that’s also an edgy, difficult experience. So if you have that cultural understanding, then you’re going to treat people with more respect, and the potential for stigma and discrimination really is much reduced.

[00:11:40] Lucy: Yeah, that’s so fascinating. I’ve never heard it being described as a difficult gift before.

[00:11:45] Rachel: Right. It makes me think a lot about kind of Buddhist beliefs around adversity.

[00:11:51] Mary: Yeah.

[00:11:52] Lucy: But also the power of language. I think I used to think, oh, they’re just words. They can’t really impact you. But they do. They shape the way you see someone and their experience.

[00:12:05] Rachel: And thinking about it in the explanatory models, being open, it also leaves for solutions to be open or for greater opportunity for healing or for responses.

[00:12:22] Mary: Yes, that’s true. And if we call something an illness and we put doctors in charge of it, we’re going to get a very narrow. And the doctors command most of the resources. We’re going to get a very narrow range of responses that may be somewhat helpful to some people. They won’t be everything they need. They may not make any difference to some people, and they’ll be quite harmful to others. So I think it’s very unfortunate that we have a legal service system where at the hub of that system sits the kind of psychiatry, and I’ve never been antipsychiatry at all, but we need psychiatry as one of the spokes of the system and not at the hub.

And I think when I look at systems around the world and efforts at reform, the one thing reform efforts fail to do is take psychiatry away from the hub and make them a spoke in the system.

[00:13:38] Rachel: That real decentering, that decentering of psychiatry.

[00:13:42] Mary: Is really centering of psychiatry. Yeah. Because I think psychiatry can be very useful for people.

I’m not at all an abolitionist about it, but equally useful can be stable housing, help to find meaning in your distress, cultural and spiritual support, getting a job, and being socially connected.

These are all equally important. And yet we spend probably in Victoria still maybe about 95% of the budget on pills and pillows.

[00:14:25] Rachel: Yeah, pills and pillows. It’s a great statement. It really sort of talks. What comes up for me is just the reductionist nature of what we’re investing. Yeah.

[00:14:38] Lucy: I was wondering, Mary, from your experiences of being in extreme states, whether that’s you in your own extreme state or supporting other people, what do you think is the most helpful thing that people can do for someone?

[00:14:51] Mary: Well, for me, when I was in my extreme states, the thing that helped most was kindness and acceptance. People who got agitated and fearful were not helpful, or who. People who got controlling were not helpful, but people who were just kind, who accepted me and didn’t really expect too much from me.

[00:15:16] Lucy: Yeah, I think that’s such a key, just letting someone be as they are, so simple. Why do we keep overlooking these?

[00:15:24] Mary: Yeah, I think a lot of the most effective approaches in mental health are some of the simplest ones, and I think there’s a huge place for just calm kindness that trumps a lot of the other clever tricks and interventions that people throw at people in the system.

[00:15:50] Lucy: So what went wrong? Why have we sort of lost that ability?

[00:15:58] Mary: I think that’s a complex question, and I think you have to zoom way out from psychiatry itself into our culture.

And I think there’s a cultural fear of madness. And madness is pretty scary, not just often for the people who are experiencing it, but for the people who look on. We have a.

And this is very historical, but we have a set of quite magical community expectations on psychiatry to predict risk, which they can’t do very well at all, but we still expect them to, and to respond to it in coercive ways.

Now, we’ve got several coercive sort of systems in our society, and they’re all kind of slightly, slightly interlinked, and they’re really responding to community fears, whether they’re realistically based or not, on people who behave differently or who are a threat. And of course, they cause people, particularly psychiatrists, to become very risk averse. And so what do they do?

They use the tools they’ve got available to them. That’s the Mental health Act. Medication and locked wards, and that’s what they use in order to manage the risk. Now, the risk is not even necessarily to the person themselves, but it’s to their professional reputation and to the organization. So we’ve got a pretty unhealthy dynamic operating there, and I think we’re not going to get very far until we sort of break that particular dynamic.

[00:18:11] Rachel: I am interested to hear a little bit about the memoir.

[00:18:17] Mary: Yeah so I wrote a memoir that was. It took me ten years to write, and it was called Madness made me, and it was published in 2014. So it’s a wee way.

[00:18:31] Rachel: Congratulations, by the way. Congratulations.

[00:18:35] Mary: Yeah, it was quite a job thing to do. Some ways I do like writing, and it was probably one of the most satisfying achievements of my career, finishing that memoir. The whole idea of the memoir was to show that madness is a full human experience, that meaning and value can be derived from. One of the things I wrote was about the relationship between what I called madness and sanity. I wrote this. The conventional wisdom says madness and sanity can never meet over the great wall that separates them. But I have experienced both, and they bleed into each other like water into wine. My madness and my sanity are not two parallel stories. They are one story in two dimensions.

Madness and sanity are not two different garments. They are the warp and the weft of the same fabric.

Sanity is the container madness sits in. They are made for each other, like a cup is made to hold drink.

Sanity stops madness from spilling everywhere. Madness stops sanity from confining us to the tyranny of the ordinary.

So I had a lot of reflections in it about the nature of the experiences I was having, and not just a description of the actual experiences. Yeah.

[00:20:10] Lucy: So powerful, what you’ve written.

I’ve never heard anyone write like that on that topic.

[00:20:17] Mary: One of the things I really wanted to convey is that these experiences have meaning, and you can learn an awful lot from them. I found it really difficult to use the usual tools of analysis to understand those psychotic experiences. And I sort of grappled with this quite a lot when I was trying to piece it all together. And what I found is that nobody really wanted to help me. So the professionals, they just wanted to know what my symptoms were, and they didn’t really sort of take any interest in the meaning I might derive from it. And I’ve got a piece here that describes the dilemma I was in when I was going through those experiences.

So I start off by saying that there are many stories about madness.

For mad people, the stories are of a powerful experience. For psychiatrists, it is a collection of symptoms, and for families, it’s disturbing behavior. For the public, the story of madness is enshrined in the dictionary. In everyday language. Madness is insanity, foolishness. It’s wild and uncontrollable.

Madness has been described again and again by people who’ve never experienced it. The mad person’s definition of madness has never made it into the dick, into the dictionary, or into conversation. Media stories, literature or mental health discourse, our version of madness can even elude us. We lack a validating language to make meaning from it. Our madness stands outside in the dark, knocking on the door of meaning, struggling to get in. My own stories of my madness struggled to take shape, while other people’s stories of it took instant inspiration from the dictionary diagnostic manuals and a wider culture that completely shunned it.

Most of the stories of those who look on, seeing only snatches of madness portray it as all bad. My story of my madness, though, is fuller than those who looked on. As well as being the most intricate story, it is the only unbroken one, the only story that had a witness present from start to finish and every moment in between.

That witness was me.

That’s kind of a reflection on how there are so many people, so many sort of ideas about what we’re going through. And yet, as a group of people, we were never supported to really create our own meaning about these experiences.

[00:23:32] Rachel: Were you able in those years to find a meaning making process?

[00:23:38] Mary: Yeah.

What I decided, one of the things that was different for me than for a lot of other people, is I was never clear about why I ended up with these existential crises and these mood swings and psychosis. It was never that clear to me. And a lot of people say, well, some really bad things happened to me and that’s why I ended up there in a way that if you’ve got a clear explanation, you can weave it into the story of your life a bit easier. And I had a real struggle with that.

And I’ve got another piece where I describe the way I started to be able to integrate it into my life. And it talks about the importance of my peers. At the same time, I start off by saying my madness was one of the most profound experiences I ever had. It was as intense as falling in love, a religious revelation or overwhelming grief. I didn’t want to romanticize madness, but I knew it deserved the same status and respect as any other powerful human experience. What did it mean when the world was too beautiful for me to look at? What did it mean to be inside the black box? What did it mean that I lived in such extreme zones of existence? Nobody really knew or cared, except me? Mostly it meant terrible suffering and my desperate struggle to find a valued place in the world. At first, it meant wandering around the crumbling edges of human experiences like a lost explorer.

But over the years, I met many fine people who were mad, like me. I learnt that our madness had taken us to a foreign land where only mad people could go to. Some of us stayed in this land for a long time, while others got out and kept returning to it. Mental health professionals stood at the border trying to pull people out of the mad land. Even the ones that wanted to stay. They knew the Madland was as a mad, as a bad place where people got lost, sometimes forever, but most of them had never been there .My peers helped to show me that I was not the lone lost explorer I thought I was. The Madland, for all its perils, had some of the most enchanting scenery in the world. Like a land that has mountains and ravines, rivers and caves, blinding sun and swirling storms, the Madland could be a place of beauty as well as danger. My peers helped me understand that there was a whole tribe of us who’d been there and seen many of the same things, things that other people didn’t understand.

Many people reached the border of the Madland at some time in their lives. Most manage to skirt their way around the edge of it and look on with dread at a distance. But those of us who go right into its belly come out with richer pictures of a being that has been lost and found again.

The tragedy is, no one wants these pictures like the paintings of some abstract artists. People look at these pictures and think they could have been done by a child of three.

My own pictures of madness came in the word form of words and metaphors at their most powerful. My words floated in from the blackness and passed through me onto paper.

I made meaning not in spite of my madness, but because of it. It was not the kind of meaning that answered ambitious intellectual questions, such as why, like haunting musical poetry, it was a meaning saturated with soul, an intuitive expression of meaning, of being without the labor of logic. So that’s how I kind of, in the end, came to understand it. Not from an intellectual perspective, but more from, I guess, an aesthetic or poetic or something perspective or emotional perspective.

[00:28:15] Lucy: It’s the most incredible visuals I’ve ever heard been told about madness. It’s such a gift for people who haven’t been through it, to understand it. So many people can’t articulate that experience, and to hear it spoken about in a way that you’re just amazing storyteller. It’s such a gift.

[00:28:36] Mary: For me. It’s a bit like sculpting stone.

A lot of that writings had five drafts.

You don’t just sort of spin it out in one go.

[00:28:54] Rachel: Such a gift to the world.

[00:28:57] Lucy: Yeah, I can’t wait to read it.

[00:29:00]Mary: If you want to find it, it’s called madness made me, and it’s available as an ebook or a paperback on Amazon.

[00:29:09] Lucy: Awesome. We’ll put that in the show notes.

You seem to have had a lot of good things come out of your experiences.

[00:29:19] Mary: Yeah, I think that’s true. One of the things that makes me so sad is seeing people who, for whatever reason, and there’s a whole bunch of reasons why this might happen, and some of them can be laid at the feet of the system, but who stay stuck in that place, who remain socially isolated, without a contributing role in poverty, and with a very diminished sense of self and self agency. That really fills me with great sadness that there are quite a few people in our system actually encourages some of this. One of the reasons I was able to get beyond that point was probably my original privilege. And I can’t emphasize enough how being white and middle class was pretty helpful to me, and being brought up to be a questioning person was very, very helpful to me in navigating my way through and out of that system. I’ve had some pretty amazing opportunities and experiences in my career that I wouldn’t have perhaps had otherwise if this hadn’t happened to me.

And I would just like everyone else who goes through those experiences to be able to get to a point in their lives where they can see the benefit of it and move to another place where they’re not sort of. Where it’s not sort of dominating their lives.

[00:31:09] Lucy: Yeah. I think that’s the power of lived experience stories. And it’s so important to hear stories like yours because I’ve spoken to a lot of people who’ve had very extreme things happen to them, but when you speak to them, they say, I don’t regret any of it, and I wouldn’t take it back.

[00:31:25] Mary: No.

[00:31:26] Lucy: We’re so caught up in not letting it happen at all that we’re just not even letting people go through it.

[00:31:33] Rachel: And make meaning of it or defining it in such a limited way.

[00:31:37] Mary: Yeah.

[00:31:39] Lucy: If you don’t actually hear people who have been through these stories, you make your own assumptions about what that’s like and you miss all the magical parts.

[00:31:48] Mary And there were some incredible. I had some incredible experiences, some terribly scary, awful experiences, but I had some amazing experiences. And in some ways I live in the sort of normal zone. I haven’t had a mood swing for years, and sometimes I miss it a bit.

Sometimes I think, oh, they were such powerful experiences.

[00:32:15] Lucy: Yeah.

[00:32:16] Rachel: What advice would you give to the outsider of the foreign land standing on the edge, trying to pull people back?

[00:32:28] Mary: I would probably say, get inside people’s souls instead of just looking at their symptoms.

[00:32:38] Rachel: Okay, how do you do that?

[00:32:40] Mary: Well, you listen to people.

One of the things people can do, instead of reading those awful papers they read, they could read more accounts of people’s accounts of their experiences.

One approach that we’re exploring at the moment in the department of Health is some sort of deep dialogue where people with different perspectives come together and talk about these things. And one kind of area of dialogue could be the different experiences of the same phenomenon. Like someone has a psychosis, there’s the person’s own experience, there’s the people who love them, who look on and think fuck.

And then there’s the professionals who, for slightly different reasons, think fuck.

[00:33:35] Rachel: Yeah.

[00:33:38] Mary: And how you can mediate those different realities to come to a point where the experience itself is just honored a bit more. One of the things about it is when you’re in those states, there’s only room for one.

It’s very hard to share.

So it’s very isolating and very hard to describe too, my descriptions, and I’m not actually describing being inside the experience, I’ve just been reading reflections on it. I worked quite hard at describing those experiences, and I can understand why people find that really, really difficult. And the open dialogue approach should open the way for these kinds of discussions where people can feel safe and appreciated enough to talk about what it’s like for them, while everyone.

[00:34:47] Rachel: Yeah. Where people’s experiences can met with curiosity and respect and time. I think just being with.

[00:34:59] Mary: Yeah. I think one of the problems with the mental health system, and more so than when I was using it, is just how overrun it is and how it seems to me that the job of the day is to keep as many people out as possible because people are. There’s so much demand.

But I think there’s a cultural issue behind that. I think if we invested more in communities, much more down the prevention and promotion end, and we equipped communities to look out for each other and look after each other, I think we could do something about the demand. Because I think people, as soon as they feel, oh, I’m not coping, they just go off to a GP. What does a GP do? Give them a pill or try and refer them to a psychiatrist. And if they’re feeling really shit, they go to Ed.

And that’s a very dehumanizing experience for a lot of people.

I don’t think it’s just.

We should just understand it as, oh, a whole lot of people are getting mental illness and they have to go and see a professional. I think we need to think why is our culture structured in such a way that we can’t take care of each other, we can’t sometimes take care of ourselves. And as soon as things get a bit rough we resort to the medical professionals.

[00:36:46] Rachel: Yeah, it’s so true. When we think about the role of social determinant and the community would meet those needs in many ways and when there was problems or difficulties, the community would respond. But now it’s service provision.

[00:37:03] Mary: Yeah. And I think what’s happened now, I don’t want to glorify the role of communities historically either, because,

Rachel: No, there was other bad things.

Mary: They’ve been a bit cruel at times. But what’s happened in the last couple of hundred years is that the service system has actually taken over the role that was taken over by aunties and grannies and neighbors and communities and actually disabled those skills that people had.

And I think that’s really unfortunate.

[00:37:44] Rachel: Which has also contributed, I think, to the pathologization because this is no longer a human experience. There’s something going wrong and then it requires an expert.

[00:37:57]Mary: It requires an expert

Lucy: of someone who doesn’t know you.

Mary: Yeah. And someone who doesn’t know you is paid to be there. Yeah.

[00:38:07] Lucy: So we’ve spoken a little bit about what the mental health world doesn’t do so well, but we’re wondering if you could think of a time where you’ve seen someone handle distress.

[00:38:18] Mary: Oh yes. Well, yes, look. Yes, and I think it’s really good to focus because I get into critique a lot.

[00:38:27] Lucy: We all can. Yeah.

[00:38:28] Mary: And I think it’s good to focus on some of the things that work. Well, I remember when I was in the hospital I used to go into almost sort of catatonic depression, I guess you’d call it, where I’d just be mute and be in bed all day doing.

And I remember this nurse used to come every afternoon and sort of unfold me out of the bed and stand me up very gently.

She wouldn’t say a word to me and she’d just take me for a little very slow walk around the grounds and put me back into bed. And it’s such a simple thing, but I just remember her acceptance and her not trying to make me do anything, not trying to curry me up because I was incredibly slowed down.

But just the kindness of that. I think it’s quite hard to be with people who are in extreme states. I’ve had my experience with friends and my partner and it’s pretty challenging. So I think we need to acknowledge that for people who are sort of looking on. But yeah, I think there are a lot of very humane approaches that have been built up.

The problem is they’re on the outer edges of the system and they don’t get sort of built into the fabric of the system. They’re just little outliers. And one of the things that worries me about the growth of peer support and I’ve been going around visiting mainstream clinical mental health services and it’s very, very hard to maintain your identity and integrity in such a clinically dominated system.

And so there have been times when I’ve thought, oh, the peer support workers are kind of starting to think a bit like clinicians, and I think we really need to give people the education, the supervision and the support themselves, but also for the services to understand that their dominance is actually killing off a very precious kind of emerging approach that could be very helpful to the way they do things.

And I don’t think people mean to do that.

I often reflect on my life as a white person in New Zealand, and you just go around, you’re the dominant culture, you just go around doing things the way you’re used to and you don’t always realize that what you’re doing is suppressing the other cultures around you. And I think that’s what’s think. I think there’s a lot of work to be done in the lived experience, workforce development, on that organizational readiness, but also on supporting that workforce to hold true to their identity and values.

[00:42:15] Rachel: Thank you so much, Mary.

[00:42:17] Lucy: Yeah, this has been a very powerful conversation. I’ve been so drawn into your words and, yeah, you’ve given such a unique but very important perspective. So thank you.

[00:42:27] Mary: Oh, it’s a pleasure.

[00:42:33] Rachel: A difficult gift.

[00:42:35] Lucy: A difficult gift. What a name.

[00:42:37] Rachel: It is a really appropriate name, isn’t it?

[00:42:39] Lucy: Yeah, it’s a beautiful reframe.

[00:42:41] Rachel: Yeah. You know, the kind of things that can happen or what’s possible through suffering.

 [00:42:49] Lucy: That came out a lot, didn’t it?

She was speaking about how she actually missed those experiences as well. That’s not something that people generally talk about. I feel like a lot of people might be shocked if you heard someone say that they miss being in that realm. How amazing were Mary’s descriptions of madness.

[00:43:09] Rachel: There were so many metaphors in there, wasn’t there? And images.

that listening to her speak, I could have these pictures in my mind that were so powerful, so vivid. Yeah. Where I landed at the end of it all was just this really sitting with this confirmation, I guess, of the belief in love and healing, love and compassion and kindness and the healing power of that.

[00:43:39] Lucy: Yeah.

It keeps coming up, doesn’t it?

[00:43:42] Rachel: It really does. I feel like we’re so lucky to have Mary working in our mental health system and doing the job she’s doing now, but also all the things that she’s done.

It’s a life really committed to the benefit of others, and I find her incredibly inspiring.

[00:44:07] Lucy: Absolutely.

[00:44:07] Rachel: It’s a real honor to have been able to talk with her today.

[00:44:24] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

The definition of spirituality mentioned references the work of Canda, Edward (2008) Spiritual connections in social work: boundary Violations and transcendence. Journal of Religion and spirituality in social work 27. 25-40.

This episode also mentions “My Beautiful Psychosis: Making Sense of Madness” by Emma Goude. Check it out here: https://emmagoude.com/books-2/#.ZdvvPnZByUk

Come and listen with:

Lucy (She/Her) – A big fan of pickleball, ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – A search for meaning

[00:00:01] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Lucy: In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] Rachel: discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] Lucy: The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] Rachel: Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] Lucy: Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question how can we respond to distress with greater compassion and humanity?

[00:02:05] Rachel: In this episode, we talk with Elsa. Elsa talks us through her new role as the spiritual care lead and some of her hopes for the role. Elsa breaks down and simplifies what the word spirituality means, what it can look like in a modern world, and why it can be important in the context of mental health and healing.

[00:02:35] Lucy: Thanks for joining us today, Elsa. Are you able to tell us a little bit about yourself for those who don’t know who you are?

[00:02:42] Elsa: Yeah, sure, I suppose in a work context. I work for the Alfred. I’ve been working on the inpatient unit at the Alfred Hospital for Mental Health and I just recently finished my role there as a allied health principal and I’m starting a new role in July as the mental health and spiritual well being worker. I’m also a mum of three teenagers, married and live locally, so that’s a bit about my personal life. I also do some voluntary work with young people.

So, yeah, that’s a little bit about me.

[00:03:29] Rachel: We’ve been asking everybody who, at the start of each episode, the same question. I wonder, Elsa, if you can think of a time you or someone you know have had a disproportionate reaction to.

[00:03:41]Elsa: Yeah, well, yeah. The one I thought about was probably because I’ve been visiting family and I’d gone to Dublin, and because I knew I was going to see my family, I was going to surprise my mum and dad. I wanted to do something special. So I was like, I need to get something that’s Irish. And so I bought a couple of presents for my parents. I got my dad, like, a peaked hat, sort of made in Ireland, like, it’s authentic. And I tried to get something for my Mum that was equivalent, and I got her this scarf that was also made in Ireland.

And it all seemed quite sort of legit and authentic, and I was just really excited about it. And I get quite excited about seeing people happy or probably over.

I don’t know, I just do a bit of, like, a bit of a dance and a bit of a. And I remember giving it to my parents, and my Mum’s reaction to the scarf was like, oh, isn’t it great? And I was just, like, making it, like, trying to sort of make it better than it was, I suppose. But for me, it was just so meaningful and stuff like that. And I was just like a child.

I sometimes look at myself and reflect, and I go, why are you so excited over something so simple? And the reaction from someone is, like, a bit disappointing. And I think it’s their reactions that kind of stop me or people’s reactions to my sort of.

[00:05:20] Lucy: We are here to talk about extreme states. That’s the overarching theme of the podcast. We just wanted to ask you what that meant for you in your life or in your role, because it’s a bit of a broad term and people interpret it in different ways. But when you think of extreme states, what comes to mind for you?

[00:05:39] Elsa: If I had to define it, I’d say it can be unpredictable and it can surprise you.

It’s often, in my opinion, a response to something that is an event, or whether it’s a sad event or exciting event that maybe lacks control sometimes. And I think sometimes extreme states can surprise us, and sometimes it can be a learning experience as well. When you go through that, is there a real definition about it? Sorry, I’m just interested.

[00:06:16] Rachel: I think it’s often used as an alternative to medicalised language around things like psychosis or other extreme states that are sometimes referred to as symptoms or explained through disorders.

[00:06:34] Elsa: Yeah, I suppose things that aren’t perceived as normal is an extreme state, I suppose. But I’d also question what is normal?

[00:06:45] Rachel: I don’t know if it’s perceived as. I think maybe what we’re trying, the use of a term like extreme states is trying to say they are normal. Their responses to experiences or things that happen for humans. So they’re kind of extreme psychological distress, perhaps. So we’re trying to actually mean they’re quite human responses to different life events or different experiences or different experiences of ourself.

[00:07:21] Elsa: Yeah, I think especially when working with others or talking to others. And when I think about sort of the conversations I’ve had, I don’t know about you, but sometimes you think, oh, why is that person feeling so upset about that? Or like expressing that way and themselves in that way? And I think we do need to remember that there’s so much that might be different and that we are different, we are individuals, we will respond differently.

And that example I gave about me being excited and my family not being as excited or whatever, I think the problem is sometimes we make apology for feeling those ways. But maybe it’s actually okay just for them to feel the way they did in terms of their response. And it’s also okay for me to have felt excited about something that maybe they didn’t feel as excited about. Because for me it was meaningful in a different way. Like, I spent a bit of time thinking about it and I went to quite a few shops and it took me a few days to decide on what I was going to do. I didn’t give them that context, but that’s why I was excited. Maybe that’s why I was like, this is meaningful. But they didn’t get that context. They just got me giving them a gift.

And I think sometimes we sort of judge that response that what we experiencing but what we haven’t understood is the meaning behind it or what’s gone on for that person. And I think that is actually sort of quite relevant. And we don’t always spend that time asking or understanding.

And I think if we did, then maybe we’d be just as excited or just as upset or whatever. I think there is something about that sort of understanding or just being with that person and connecting with that person. That’s what’s so important.

[00:09:28] Lucy: We’re all just off in our little individual realities, our little bubbles.

[00:09:33] Rachel: Individual realities.

[00:09:33] Lucy: Sometimes they join in.

[00:09:35] Rachel: Gosh, I like that.

[00:09:37] Lucy: Yeah, but I’m also really interested to hear about your new role. I remember opening up the email saying that you’d gotten the role, and I think it was the first time I’d ever seen a role like that come up, ever, in mental health.

[00:09:52] Elsa: Yeah.

[00:09:53] Lucy: I was wondering if you could tell us a bit about it, how it came about.

[00:09:58] Elsa: I suppose I’m just as excited as you, and I almost am in disbelief that it’s actually happening. It’s a role that requires you to be a mental health clinician or someone with sort of that professional background that is able to not only understand mental health concerns or whatever, but be able to sort of engage with someone exploring their spirituality. So the emphasis is more sort of being a clinician exploring spirituality. And I suppose it’s important to start off with what is spirituality? And I can actually sort of just give you a definition. Spirituality refers to the human search for meaning, purpose and morally fulfilling relationship with oneself, other people, the universe, and of being, however that’s understood. So I suppose when we talk about spirituality, we’re talking about meaning and purpose, and the key is relationship. And I think that’s the key around sort of seeking meaning and purpose. It is through relationship, as it says, with oneself and others. And that’s what brings meaning and purpose. And how can we ignore that when it comes to mental health? And what I have found, as I’ve sort of worked for different services in the UK and here, is that it’s not always considered or talked about. 

And also for the person that is sort of receiving mental health service, they often have said to me and others that they are afraid of talking about that because of fear of judgment and stigma, because of their belief. And also how that sort of sometimes conflicts, comes into conflict with things like hearing voices or psychosis, if you like.

And I remember this one time working with somebody, and again, this was in my, she was a young person with a very strong christian belief, christian community, christian family, and she experienced and was diagnosed with schizophrenia, and she was experiencing a lot of psychosis. And she felt that in that experience of psychosis, that she was being quite sort of judged and people from her community did not understand or know how to deal with it. And some of it was actually quite dangerous in terms of what they were saying to her around that. And then in the care that she was getting from mental health, that sort of stigma around sort of like just her religious beliefs and sort of how that, like when she was saying that she prayed and heard from God, it was almost minimised or sort of seen as something that was psychotic. So she was having a lot of conflict around, sort of like what is truth and what isn’t. And I remember having those discussions with her and it was such a good start to my career, in some ways, around really exploring that and trying to understand that more. I’m not saying that I get it, but I am saying we need to feel comfortable about helping people explore their spirituality, but also decipher what’s real and what isn’t and maybe just feel comfortable to have those conversations with us as clinicians. So I suppose when I look at this role, I think it’s a good role to have, and I think it’s important to understand different cultural beliefs, different religious beliefs, but also help people understand and decipher what’s true and what isn’t, because I think there is a lot of confusion. And when we avoid things, it means that we’re not helping or enabling people to explore that aspect of their lives that bring meaning and purpose. And so that’s where I think this role will be really significant. But I also think it’s a role. Whilst it’s new in Australia, it’s been explored in other countries like Canada, America and UK, where they actually see it as part of their mental health care. I’m quite excited about having this opportunity.

[00:14:50] Rachel: So how do you think it will work? What are your hopes for how the role will integrate across the mental health system?

[00:15:01] Elsa: I wonder, like I said at the beginning, I feel like a lot of clinicians have felt probably not empowered or enabled to sort of really speak freely or explore freely with those within the mental health system. But even, like, when I talk to staff, a lot of staff withhold their beliefs and thoughts. I don’t know if you found that as well, and that’s actually quite sad.

I do wonder whether it’s about what’s happened over the years around sort of like terrorism and extreme belief systems of certain sort of religions. And I think you come across every kind of belief that someone might have. There’ll always be a spectrum, there’ll always be those extremists that sort of like, believe things that aren’t necessarily really true. And because of media, they just see the extreme. And I think there is something there that’s really influenced people’s thoughts and beliefs and their ability to explore with others. And I do wonder, is it fear?

And I think whilst we don’t talk about it, and whilst we don’t allow those spaces to talk about things, then what it becomes is it becomes alienated, it becomes something that isn’t explored. And how do we learn? We learn by questioning, being curious, exploring and conversation. And it’s ironic. We just said spirituality refers to like, it’s linked with relationship. Relationship is giving and receiving, isn’t it? It’s not just a one way thing. So in the same way, when it comes to spirituality and stuff, I think we do need to talk more about it. There’s three components to the role, I think a part where I think I need to probably get staff on board to talk a bit more and to explore a bit more and educate and also learn together.

But also I also think about group work, how that’s a good space and maybe sort of looking at well being and including spirituality. So not just looking at the social, emotional, mental well being, but looking at spirituality. So bringing that as part of our package of care for consumers. So when we’re working with them, when we’re doing a wellness plan or whatever, that we’re looking at that aspect, we explore and we’re asking.

And then there’s the third aspect, the one to one work, helping people explore their spirituality and meaning and purpose through that one to one work. And especially those that are sort of having conflict, like I described earlier on with that young person. And I have had a couple of clinicians ring me up and say, look, I’m working with someone and they exploring their Spirituality, but I don’t know how to talk to them or how to refer them on. And I think there is an aspect of sort of like, how do we as a service, ensure that what we support people with is safe.

[00:18:36] Lucy: I love how you’ve sort of demystified spirituality by your definition as well. Because I think a lot of people steer away from the word spirituality because it sounds very airy, fairy, and not grounded in reality. But I would say the opposite is probably true. When you.

[00:18:53] Elsa: True.

[00:18:54] Lucy: Would you ever read that definition again?

[00:18:56] Elsa: Yeah, sure. Spirituality refers to the human search for meaning, purpose, and morally fulfilling relationship with oneself, other people, the universe, and of being. However, that’s understood.

And it can also support, in times of suffering and loss that is experienced. And I think that is true because often when we work with people that are in crisis or people that are facing death in any way or extreme situations, often they’re not looking to sort of what do they do? They look for relationship, they look for meaning. They look for purpose. Suddenly all those things, those materialistic things or those things that like work or whatever, doesn’t mean anything anymore, but what they’re looking for is something else. And I certainly can speak from my own experience when I suffered loss, but also those that I’ve worked with, whether they’re friends or in a work capacity. It’s interesting. That’s something that often happens, I would say.

[00:20:12] Lucy: Yeah, I feel like people probably in their everyday life, if you read out that definition, I don’t think there’s too many people who wouldn’t relate to that in some way. I think we’re all looking for meaning and purpose.

[00:20:25] Rachel: Absolutely.

[00:20:25] Lucy: And working on ourselves and relationship with ourselves and others. It’s just how we frame that. And I think when you go into those heightened extreme states, it really amplifies what’s important sometimes.

[00:20:39] Elsa: Absolutely. I agree with you.

[00:20:40] Lucy: Do you think that there is an overlap between spirituality and psychosis?

[00:20:46] Elsa: Look, what I’m going to say is not founded in sort of, like, evidence, necessarily, but I actually do think there is. I find it interesting that when you sort of unpack things when someone’s going through psychosis and stuff, often there’s a lot of reference to sometimes religious beliefs and spirituality. Really?

And I find it fascinating that as clinicians and I speak for myself sometimes, that we immediately kind of think, oh, not reality based, blah, blah, blah.

But then when you sort of really unpack it with someone, there’s an element or a thread of truth there. Like, I’ve often listened and thought, gosh, it’s like you connected to something that’s beyond here.

And whilst they’re in that extreme state, I wonder whether they are a bit lost. But you do wonder whether there’s a thread of truth to some of what they experience. And I do think there is an overlap. And I do think it’s interesting that a lot of psychosis makes reference to spirituality, whether it’s evil spirits or not, whether it’s God or whatever. And I think there is an overlap, and I find it fascinating. I’m like, why is that? Yeah, but it’s just fascinating.

[00:22:21] Lucy: It is fascinating. I’ve worked with a lot of people with psychosis and had psychosis myself. The one thing we all had in common, believing you’re Jesus, or feeling like you’ve got supernatural powers. And when you come out of that, you go, oh, no, I’m not Jesus. But at the time it feels like that, but it never gets explored at all. It’s just immediate shutdown. And a lot of people feel, again in that book that we read, my beautiful psychosis, when she comes out of it, she feels like she’s had a big spiritual awakening. And they go, no, that was just psychosis. Just like reduced to a meaningless experience. Shame.

[00:23:00] Rachel: Yeah. I wonder why we’re so reluctant as a system, if you like, or a world, to really explore what the belief systems are representing about the real life of someone.

[00:23:15] Lucy: Yeah.

[00:23:16] Rachel: What these psychotic expressions or experiences. What metaphorical meaning might that be playing to the real life of a person and their experience? But why do you think we are so reluctant to explore and be curious about the meaning of these beliefs and experiences that someone might have in an extreme state?

[00:23:39] Elsa: Wonder if we’re afraid. Like, I. It’s like a lot of us are afraid of not being in control, I think.

And maybe I’m just speaking for myself and sometimes going through a journey of sort of something like that, like psychosis, spiritual journey or whatever, there is that sense of part of you feeling like maybe a lack of control.

And I wonder whether also I do blame media and things like that around, sort of like, what is portrayed around, like, as soon as someone, they’re very quick to sort of say, someone’s mentally unwell when something goes wrong and all that kind of stuff. So I do worry about that stigma and that concern, and I think I wonder whether that has impacted and influenced even clinicians and the work that they do and maybe also those that are experiencing it, that sort of sense of fear of being labeled or people making assumptions about them.

So I do wonder whether there’s a sense of fear.

[00:25:03] Rachel: But there’s this sort of reductionist kind of result of the human experience.

I do a lot of work with or talk to a lot of people who are experiencing anorexia, and I often think this is happening for a really important reason, and this has a really important meaning. And how do we explore that? There’s no explanation or opportunity to really make sense of what this very human experience means in someone’s life. And I think the same happens with psychosis. You’re hearing voices or you believe these things about yourself because you have psychosis.

That’s not an explanation, but it feels like a certainty in a way. It feels like we are really quick to label it as a symptom or something that’s happening because you have a disease or something wrong with your brain. Rather than being able to sit with some sense making and exploration of what this means for someone and their life and their experience of the world.

[00:26:15] Elsa: And I love what you just said about making sense. I think as humans, we do compartmentalise. We do try and make sense. We try and sort of say, this is what it is. And even when we label or diagnose, we kind of are trying to make sense and saying, this is what to expect and this is how to treat. But actually, sometimes the danger of that is just the individualism and treating that person as an individual. The reason why spirituality is so important is because it is about being and just almost being comfortable with the not knowing. And I think sometimes we struggle with that as humans because we try to sort of maybe control our emotions or just be okay in certain settings or sort of, like, meet with each other’s expectations. But sometimes that sense of sort of spirituality or just being there is a sense of sort of freedom, and it brings hope, and that’s what’s so exciting. And I think that’s the bit that probably we all struggle with, if we had to be honest.

[00:27:21] Lucy: And it looks like different things for different people. I know Rachel has compared spirituality or religion to the football because it feels like you’re part of something.

[00:27:33] Rachel: I mean, it’s a bit of tribalism, actually, but no, it does.This is a little bit embarrassing, actually. But it gives me a sense of having a shared belief system with people and a community in which I feel I belong to and I get to connect with others that I wouldn’t otherwise meet in the world and develop relationships. And this sort of shared thing that’s happening between our community.

And that’s something that I think is really kind of absent for many people in their lives in a very individualist culture where there’s different parts of our community that offer us that, but not all of us have access to it. And I think religion and faith communities are big at offering that to individuals and people.

And so is the football.

[00:28:33] Elsa: Yeah, but it’s because you feel like you belong to something bigger than yourself. And I think it’s wonderful. And I think that’s a little bit about, again, relationship, like with others, with yourself. The whole thing about spirituality, it is that sort of sense of belonging to something bigger than yourself, which is empowering, because when, you know, let’s face it, it’s lonely and hard to feel on your own facing life. And I think to feel like you belong to something or part of something is so important because it picks you up when you’re feeling down and all that kind of stuff.

[00:29:21] Rachel: Elsa, it’s been so wonderful speaking with you today. We have one thing more we’d like to ask. Can you tell us about a time or an experience that you’ve seen or witnessed or had, where you’ve seen someone be supported who’s experiencing an extreme state in a way that you think has been helpful?

[00:29:45] Elsa: Sure.

I can actually think of a lot of examples, I think, because of my work context, but I’m going to choose one that’s probably simple and close to home in terms of just working with a young person who was quite distressed and visibly quite panicked and restless and expressed that they just didn’t know what to do.

And the reason why I’m going to share this is because I think sometimes we forget that people in those extreme states just need a bit of guidance and a bit of reassurance. I don’t know about you, but sometimes you almost feel panicked. You’re like, how am I going to help this person? And I just remember thinking, just giving simple sort of comments around, like, okay, breathe, and it’s okay. And how quickly that person responded to those very sort of small phrases and prompts, and they were able to just sit in that space. And I remember taking them away from that environment as well and just sitting in a more calm environment. And it was just a reminder of sometimes that simplicity and those simple comments around, sort of like, noticing what’s going on and helping them. Just that reassurance of, like, it’s okay to feel the way you are and you will get through this and let’s just sit here.

And although you might be an experienced clinician or whatever, I think sometimes it’s just reminding ourselves that simple guidance can make such a difference.

[00:31:21] Lucy: That’s such a beautiful example of just giving someone permission to arrive as they are. I love it. I could speak about this all day. It’s been a lot of fun. Thank you so much for joining us.

[00:31:34] Elsa: I’ve really enjoyed it as well. Thank you. You both are great.

It’s great to talk to you. So easy to talk to you. So thank you.

[00:31:42] Rachel: Thanks, Elsa.

[00:31:49] Lucy: What an incredible human Elsa is.

[00:31:51] Rachel: Really right.

[00:31:54] Lucy: I am so excited that there is a spiritual role in our service because I feel like there’s not much room for conversations around spirituality in the context of mental health. I feel like when you say the word spirituality, people are like, oh, that’s like woo woo, hippie crap kind of thing. I just feel like sometimes spirituality gets a real bad bit of a bad rep.

[00:32:17] Rachel: and there’s a lot of movement these days towards really kind of making sense of experiences. And this work that Elsa is going to do has got a great potential to really help people with that, really an opportunity to make meaning and be really responsive to people’s kind of needs and preferences and belief systems.

[00:32:42] Lucy: Yeah. So important.

[00:32:44] Rachel: So important.

[00:32:45] Lucy: And I love the way she provided us a definition with spirituality, because it just broke it down. It’s so normalised. It’s like, yeah, well, who wouldn’t want that? It was just really nice to hear it summarised like that.

[00:32:58] Rachel: Yeah, well, she’s on a very important mission.

[00:33:01] Lucy: She is.

[00:33:02] Rachel: And I really wish her well, and I hope this new position really gets an opportunity to really cause some change.

[00:33:11] Lucy: Yeah. Thanks for coming on, Elsa. We love the work you’re doing.

[00:33:28] Lucy Thank you for listening to our podcast. If you wanted to stay in touch or learn more about Discovery college, please head to our website, discovery college.

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – Is this really radical?

[00:00:01] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Lucy: In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] Rachel: discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] Lucy: The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] Rachel: Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] Lucy: Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question how can we respond to distress with greater compassion and humanity?

In this honest chat with Paul, he helps to bust some myths about common misconceptions in the medical world. Paul speaks about the value of humanizing people’s experiences rather than medicalizing it, and how including people’s loved ones in their care can make a real difference.

[00:02:33] Lucy: Here we are again, Paul. Thank you for joining us in our humble little studio.

[00:02:38] Rachel: Pretty excited to have you here, Paul, and to talk with us about.

[00:02:42] Paul: Don’t give me too much pressure.

[00:02:43] Rachel: Yeah, no pressure.

[00:02:46] Lucy: For those who don’t know you, Paul, can you just tell us a little bit about yourself?

[00:02:50] Paul: Sure. Well, I’m a child psychiatrist and I actually came up to 20 years working at the Alfred a few months ago, so I’ve been in my job as like clinical director of Alfred Kim’s for that time.

[00:03:04] Lucy: Wow. Long time.

[00:03:04] Paul: Long time.

[00:03:06] Lucy: A lot of knowledge.

[00:03:07] Paul: Well, you might say it’s too long.

[00:03:10] Rachel: This is totally putting you on the spot. But if you had to give one sort of short statement to say what you stand for as a psychiatrist, what would it be?

[00:03:18] Paul: Wow. I don’t know if I can do it in one statement, but like anyone, you’re hopefully going to try to make the system better. I mean, I’ve got quite a privileged position because I’m in charge of, I think we’ve got about 200 staff. So really, my job is hopefully help people get the best out of themselves. That’s my job. And it is something you can’t take lightly, because I do actually have power. And if you’re not going to use that for good, then it’s a shame.

[00:03:48] Rachel: That kind of reflects why we thought you might be a good speaker today, because the issues that we’re talking about is really about how do we make the system work better for people who are in extreme distress. Before we get to that, we have a bit of a standing opening question.

[00:04:02] Lucy: Yeah, Paul, I’m sure you have across your time, but have you or anyone you know had a disproportionate reaction to anything? Anything at all?

[00:04:12] Paul: Yeah, I think it’s hopefully, this is supposed to be a bit light hearted, because I don’t want it to sound trivializing what we are going to be talking about. But I did think about this question before I came, and I did burst into tears after Richmond won there, or actually before Richmond won the 2017 grand final. I think some people think it’s a game and why you’re getting so emotional about a game. But we actually hadn’t won a grand final for 37 years. And I don’t know, just the way it happened as well, underdogs and what it meant to a lot of people. So I’m trying to justify why it wasn’t disproportionate, but I think a lot of people would think that’s pretty extreme disproportionate to us when you’re game of football.

[00:04:52] Paul: We sort of interested, Paul, when we talk about the word or the phrase extreme state, what comes to mind to you? What do you think about?

[00:05:01] Paul: Honestly, I didn’t know that term until I attended the discovery course that you guys ran, because as a psychiatrist, you get trained in using more medicalized language, like psychosis, or in fact, we talked about schizophrenia. So what comes to mind when I hear that word is what I learned there, which is a more humanistic way of describing an experience for people when they’re out of touch with reality or their emotions are out of control or their feelings are out of control. And that’s actually a new concept for me. It’s probably trying to be a bit less prescriptive or a little bit certain about what’s behind it.

I think that language, using that language helps humanize the situation. Also having people not jump to conclusions about what might be behind it.

And also, I think it helps less medicalize it.

[00:05:57] Rachel: Can you say a little bit more about what you mean by medicalizing the extreme states and what’s the problem with that?

[00:06:06] Paul: Yes, I think there is a problem that in our Western culture, I believe that over a period of time, lots of emotional distress or mental distress has become too medicalized, and it leads to a real narrowing of being able to help people. And it’s also very. I think it’s part of our culture, too, which is very individualistic, and the responsibility for everything lies within the individual.

I think it causes heaps of problems because it particularly often leads to unhelpful solutions like that. An expert knows best that drugs are the way to help with these things, only that there’s some underlying medical problem, which is usually not the case. I mean, it’s sort of comforting in a way, and helps reduce guilt and shame and things. So there are some tempting things about it, but the negative is that it’s actually not really based on an actual factual basis. The best example I can think of is recently what I learned is that 90% of people in Australia believe that depression is caused by chemical imbalance. That’s a cultural view. So 90%. And in fact, it’s been shown that that is actually not the case. There is no evidence for a chemical imbalance. So that’s a big problem. And a lot of the drugs that have been manufactured or designed to help with that problem are based on that idea that there was a deficiency of serotonin or some sort of chemical imbalance, which means the whole thing, for me, becomes quite problematic. Not saying sometimes people aren’t helped by medication, obviously, sometimes they are. But the basis that it’s a medical illness is a problem for me.

[00:07:53] Lucy: Sounds so absurd when you say it like that, because it’s like, how are we treating people properly if we don’t even know what the issue is to begin with?

[00:08:03] Paul: Yeah, I agree with you, Lucy.

[00:08:05] Lucy: So it’s like, as a collective, I think we’re getting misled.

[00:08:09] Paul: It’s definitely getting more and more as well, because I’ve obviously been around a long time. What used to be the focus with schizophrenia is there was a massive search. I think millions and millions of dollars have been spent looking for a genetic cause, or it’s not quite the same as a chemical imbalance, but a belief that there’s some genetic thing and none has ever been found.

And because it’s such a… I think the word extreme states is helpful because who would be looking for a genetic basis of an extreme state?

That’s what I mean by the language that’s used. If you’re calling schizophrenia, it leads to a whole pathway of thinking there must be some genetic or biological basis or chemical imbalance. Whereas if you call something extreme state, I don’t think you’d be necessarily being so narrow to just look at DNA.

[00:09:02] Lucy: Yeah, because it just sounds like it’s a human experience rather than something that can be tracked.

[00:09:07] Paul: Doesn’t mean you can’t have an extreme state. Not based on something that might come out of the blue, it might be unlucky, or there might be some unknown reason why you’re experiencing that, and that’s okay. But the whole labeling of things like that, I think, is too narrowing, and it reduces the chance of effective help.

[00:09:30] Lucy: Is there anything else that you sort of see as an issue, the way we respond to people who are in those extreme states?

[00:09:37] Paul: Yeah, there’s lots. I mean, I just talking to a friend of mine, and her assumption was that people in extreme states are dangerous, and that’s a common myth as well, I think. I’m not saying there might be a small percentage of people who are, but most people in extreme states are only a person they’re in danger to of themselves.

But there is, I think, a community perception that people in extreme states are dangerous to others because maybe a tiny percentage are. So that also comes to mind when you say that.

[00:10:12] Rachel: What do you think those beliefs or those fears about people being dangerous leads to?

[00:10:19] Paul: Well, it definitely obviously leads to fear in the rest of the community. And that fear is obviously the basis for stigma and wanting to have those people put away or out of sight or managed in some way to keep society safe. And I think that does lead to more coercive treatment, more marginalization of that group of people who suffer those things in the community.

[00:10:48] Lucy: It almost sounds like just an insane response to lock up people who aren’t traveling so well and makes it feel like they’re punished. But I wonder if you could enlighten me or maybe some of the listeners, why that is a process to begin with. Why do people get taken to IPU settings?

[00:11:08] Paul: It’s generally based on fear and sometimes highly justified. So if you’re talking to someone and they’re threatening to kill themselves immediately. Obviously, you want to help them be safe, and so that’s a normal reaction. And so often having some time out or some peace, obviously, a lot of extreme states pass on their own if somebody’s being nurtured and looked after and cared for in a humane way. And so you don’t want to not have people have that opportunity, because often this is not normally a rational or thought out thing. It’s often someone’s overwhelmed. And so having a place of safety for a chance for that to settle is great, I guess.

Why are so many people being locked up? I think there’s other things at play that contribute to that, like clinicians feeling blamed if something goes wrong or if someone chooses to end their life or something. So there’s a lot of fear in clinicians that if someone harms themselves or does something, and I’m the last person to see them, they can be very defensive. And obviously, it’s very easy to lock someone up to protect the clinicians from feeling blamed. So that is a massive problem.

So I think that skews it. That’s why sometimes I think there are not other alternatives sought to help that person in that extreme state because of the fear based practicing that’s set up systemically for clinicians.

So I think there is a place for people to be in a place of safety against their will when they’re completely in extreme state and can’t be rational about what they’re doing or don’t have capacity to make thoughtful decisions in a crisis situation. But locking someone up long term for that problem is not usually helpful either. But in the short term, if it’s kind, compassionate and in a nice environment, it can be really helpful, I think.

[00:13:17] Lucy: I don’t know how much it works. Do you think it works? I mean, there’s probably elements that do.

[00:13:24] Paul: Yeah, I think. Well, in terms of, does it reduce people’s chance of suicide? I don’t think there’s any evidence that’s the case, in fact, but it’s very hard to prove that. And I certainly, obviously have put people in hospital against their will, which I thought was justified at the time because of us so scared about their risk of suicide normally, not normally hurting someone else, normally their own risk to themselves.

So I think it is justifiable.

But I think we do it too often, and I think that too often is because of the fear based practices that happen, because of the way, in particular way suicide is investigated it and in the fear that clinicians feel responsible.

[00:14:12] Rachel: For the outcome makes me think about just the result of that is clinicians and services are often in a position of us against them. So there’s this real kind of we’re working against people rather than with.

It made me think about earlier on, Paul, you said, you know, the medicalization leads to expert approaches, certainty around, or a false sense of certainty around the cause. If that’s not happening, what do we do instead?

[00:14:42] Paul: Yeah, well, I think that things are improving to some degree and I think the main issue is trying to involve as many people as possible in decisions like this. Obviously for us in a child and youth setting, it’s family. So we’re always trying to see if people can be supported in their own environment, at home with their family, but if you don’t involve them, that can’t happen.

And there’s often issues that are brought up about confidentiality and things like that. But I think, well, I personally believe we’re getting better at having those sort of crisis responses be a social network or family response. And even if that does involve in someone being put in hospital against their will, at least it’s done in a more transparent, open way, more.. There’s no secrets, it’s done with everybody’s mindfulness and it also, I think, should lead to being able people to leave hospital quicker and some sort of plan and open. I think that in the past what happened to people was a much more secret, much more things against their will without them really understanding why.

And also families felt very shut out of those decision making processes because the medicalization puts the problem in the person and the responsibility with the expert, whereas if it’s more shared decision making with people that love the person and the person, I think that even though it doesn’t sound that different, I think it makes a big difference.

[00:16:19] Lucy: When we spoke in the lead up to this conversation, you were talking about the new Mental Health act calling for less involuntary treatment. Would you be able to talk about that?

[00:16:31] Paul: Yeah, well, rightly, or wrong. I met with this guy, Terry Laidler, who’s going to be the chair of the collaborative Centre, which is supposed to be the heart and mind of the Royal Commission. And the two priorities. One of the priorities he’s has is reducing the number of community treatment orders and that’s what society wants and where really psychiatrists or mental health professionals need to be in keeping with society’s views. I think they’re laws for the society. It’s not just up to us. And I personally agree with anyway. Obviously I have supported some people being on a community treatment order. So it’d be very hypocritical of me to say never. But we do have a high number in Victoria. I’ve heard it’s the highest in the world.

[00:17:26] Lucy: Why? Why, Victoria?

[00:17:27] Paul: Firstly, I think sometimes I’ve personally been involved in situations where I feel it’s been helpful. So I’m not going to say it’s completely unhelpful. I think though, this fear based practice and this idea that experts and clinicians are responsible for someone’s life, and if something goes wrong, it’s their fault, that my opinion definitely leads to a high number of community treatment orders, because it’s taking risks and allowing people to make decisions about their own life when they may not be always in the best frame of mind, which is a difficult thing. But if you’ve also add the other layer, that you’re going to be criticized or blamed if they choose something that’s like suicide or self harm or something. I think there’s a higher tendency to have people on involuntary orders. That’s my opinion.

[00:18:22] Rachel: What are some of the things that happen that perpetuate fear based practices?

[00:18:28] Paul: I think there’s many, many things, but I think the first thing that’s happened in Victoria is the use of root cause analysis to investigate suicide, which even though it says it’s looking to find the fault in the system about why someone chose to end their life, the system is people. And so people that I’ve experienced when they have to front up, if in a very rare but tragic situation where someone’s taken their life, they have to go through some grueling investigation process where there’s incredible scrutiny on the notes that they write on exactly minute by minute, what happened in the few days before that person died, I think that seeps through the system in a really toxic way. That’s the first thing that needs to change, in my opinion. Because if you’re going to do those root cause analyses, you can’t deliver on a just culture, which is another whole topic, but the culture where clinicians are compassionate, kind and free to work in a meaningful way with people. If you’re going to always going to feel that the organization doesn’t have their back or someone’s going to blame them, and it’s just natural human thing is to practice defensively.

So I think that’s the biggest barrier. There are other barriers, though.

I think the tendency to be medicalized and not involving families as much or really focusing on individuals is a problem as well. But there’s a lot of things at play and it’s definitely changed in my career. So when I started, all of the psychiatric wards in Victoria were open, apart from a small high dependency unit in each ward. And certainly I started my career at Larundel, which was on a massive block land. And the vast majority of people that were there were free to go around totally freely. Isn’t. I don’t think there is any ward, including wards for teenagers and children that is not locked in Victoria now. I don’t believe there is. So that’s a massive shift.

[00:20:43] Lucy: Yeah. What happened in that time?

[00:20:47] Paul: Well, I think it’s not just suicide, although I think that’s the main reason. So if someone kills themselves, either on leave or from a ward, it triggers what’s called a sentinel event. And that’s when this root cause analysis kicks in. I think there’s other issues too. I mean, people would say it’s difficult to control things like drug use and other things. Visitors doing things that’s less secure and things. So it is a complex issue, but I think it would be better. Everyone, I think, has the desire that psychiatric wards could be opened more open.

But it does seem a difficult one to change.

[00:21:33] Lucy: Yeah. What are the things that you think that we can be doing better?

[00:21:36] Paul: Yeah. So I was quite involved with the Royal Commission process in Victoria, which I think was an incredibly. It was a great process. And there are many things in that which I think will, should and could make Victoria having the best mental health service in the world, actually. So one of the things that was a massive focus was the embedding of lived experience within clinics and within teams. And I think we’ve noticed a massive improvement in the quality of our care through doing that. But we’re nowhere near complete with that. Or we’ve just started on that, really. And that’s a massive focus of the Royal commission.

The Royal Commission paid, as my understanding, weighs 15 kilos. So it’s very difficult for me to summarize some of the positive changes in that. But there’s many, many positive changes. There’s many sort of structural things or resource things. But I think I would recommend people looking at the cultural shift that’s asked for in that, which is, again, a bit like what you’re talking about. To me, it’s trying to put in practice more humanistic, less medicalized, more recovery orientated practice within mental health services.

Honestly, I think that is pretty well spelt out in that royal commission and people. What is also well spelt out is things that were not right before.

One example I can give is some stories and it was in the first iteration of the hearings. It was in person. And I had the privilege, I suppose, of following somebody. And they talked a bit about the trauma that they experienced when they read their file, because there was a lot of things said about them that they didn’t know people thought about them, and a lot of stuff there that they were is highly traumatizing to read. So the whole idea of making files or available for people to read in time, or that notes are not secret biographies, but are transparent records of what’s happening with the person’s involvement and knowledge about what’s in their file. That’s, for example, I think can make a big difference because it changes that sort of us against them that Rachel talked about. And look, we’re in it together. We may not always agree, but at least we know what we’re not agreeing.

[00:23:59] Paul: Rather than when some of these people read their files, they had no idea that’s what people thought of them, and that was very traumatic.

[00:24:07] Lucy: I can imagine.

[00:24:08] Paul: And now I could go on about it, but there’s lots of things in the royal Commission report which talk to that idea of people feeling not heard and not respected and not treated well.

[00:24:21] Rachel: If you have a humanistic mental health system that is focused on non pathologizing or non medicalizing of people’s distress, what’s the role of medication or drugs?

[00:24:33] Paul: Yeah. So lots of people describe drugs being helpful to them. And so I think it’s the way you prescribe. So if you are prescribing as like providing an antidote to some medicalized chemical imbalance, I think that’s not the way to do it. But if you’ve got drugs that can help provide relief from very distressing symptoms, and the person who’s prescribing them has a very high level of knowledge about the effect of the drugs on people’s brains, like both positive and negative, and then you come to some informed. The person who’s taking the drugs comes to some informed decision about why the pros and cons of doing it and why they’re taking it and what the outcome might be. And there’s an open mindedness about the effect of that, either good or bad. And there’s an ongoing conversation around whether the drug is being helpful or unhelpful, I think it can be great.

But the idea that you come in, get labeled with something, and then get an expert tells you what’s wrong with your brain, and this is going to correct it. Firstly, that’s not based on science. And secondly, I think that can lead to more harm than good, because people can walk out feeling like they’ve got something wrong with them. They got a broken brain, or they got some chemical imbalance, which is actually simply incorrect.

It’s like just changing the way drugs are prescribed or I think that’s the key. Not that drugs are good or bad. They can be helpful or unhelpful, but if they are provided as if you got a broken brain, I think mostly they’re unhelpful.

[00:26:23] Rachel: Is that why you don’t use the word medication?

[00:26:26]Paul: Yeah, that is why. It’s deliberate.

They are drugs. There’s lots of drugs that we take. In Australia, we’re the highest users of cocaine per capita. We’re the highest users of methamphetamine per capita. We’re the second highest use of antidepressants per capita. We’re about to be, I think, the second highest or the highest user of prescribed amphetamines. So our culture is based on taking a lot of drugs.

[00:27:00] Rachel: I’m even noticing a reaction to the word antidepressant or antipsychotic. It’s sort of perpetuated by the way we even label medications or drugs, isn’t it?

[00:27:10] Paul: It is. I think when they tested the SSRIs, they’re called on people. What they found, I think, in supposedly normal people, whatever they are, is that they do have the capacity to numb feelings. Now, that could be good. If you’re really distressed, it might be nice to have your feelings numb, but it also might numb good feelings. So as long as you know that and you’re taking it with informed consent, not like that. You’ve got low serotonin. This is going to correct your broken brain. Then I think it’s okay.

But the naming is all for me. It’s marketing. So it’s a marketing strategy.

[00:27:54] Lucy: You make everything seem so clear.

[00:27:58] Paul: Well, let me assure you what is very surprising. Being someone like me. And as a group of us, we are seen as the radicals, which I feel like is really bizarre to me, that it’s a radical thought not to give children amphetamines. It doesn’t seem radical to me.

[00:28:15] Rachel: I’m wondering if you’ve got a bit of an example of a time where you think someone has been well supported in an extreme state.

[00:28:24] Paul: I just know that when we meet the whole family straight away after they’ve called in and the whole family comes, and we spend the whole session trying to help a young person with suicidal thinking, which is a really common presentation. It’s very emotional. And it’s hard work and it’s very raw. There’s tears. It feels like everyone’s in there working on the same thing. And even though the young person, obviously their wish is to not be there and also potentially to die, it’s difficult. But to me, it’s sitting with those going deeper into the underlying reasons, exploring the connections between family members, being open and raw yourself, and being able to sit with distress for however long it takes. I think those moments, that’s good practice to me, rather than jumping in and trying to work out exactly what the label is or what drug to prescribe, actually trying to spend time helping the whole family system help cope with an absolute nightmare situation.

[00:29:31] Lucy: Well, thank you so much, Paul. I want to thank you especially for not using heaps of jargon and complicated words so plebs like me can understand and follow. And honest as always, which I really appreciate.

[00:29:45] Paul: Thanks, Lucy.

[00:29:46] Lucy: Thank you.

[00:29:47] Rachel: Thanks, Paul.

[00:29:48] Paul: Thanks, Rachel.

[00:29:56] Rachel: This conversation with Paul, Lucy, left me feeling really hopeful because it was sort of know. I was left thinking, how good is it that there’s leaders in our mental health field who think this way and who are really working really hard to create a culture in mental health care that is de-medicalizing and is cautious about the pathologizing and how that leads to really limited ways that people can be helped?

[00:30:28] Lucy: And so refreshing to hear that because it’s actually quite brave for a psychiatrist to come out and say, speak so candidly in the way Paul does and always breaks things down for people in a way that everyone can understand. Rather than using all this jargon and sort of losing people along the way. Paul really simplifies and helps you understand the truth of what can go on in the medical world. I find that so refreshing and uncommon.

[00:30:59] Rachel: Yeah, it is. I feel like I’ve learned a lot from Paul, both in this conversation, but also in lots of different ways that I’ve been able to learn from him. And I’m very grateful.

[00:31:12] Speaker A: He gives a gold nugget every time I speak to him. A new gold nugget every day. Thank you, Paul. Thanks for coming on.

[00:31:34] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

This episode mentions “The Road Less Travelled” By M. Scott Peck 

Come and listen with:
Lucy (She/Her) – A big fan of pickleball, ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT –You can sit with us

[00:00:01] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Lucy: In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] Rachel: discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] Lucy: The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] Rachel: Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] Lucy: Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question how can we respond to distress with greater compassion and humanity?

[00:02:05] Rachel: Welcome back to the extremely human podcast titled you can sit with us. In this conversation, we chat with Chris about how the experiences of bipolar can feel, but also how we can learn and grow from them. Chris talks about the importance of inclusion and connection, having a vibe tribe and dropping judgment when caring for people who are having a rough time.

Chris, welcome. We have been asking everybody the same question at the start of each episode. It is, can you tell us a disproportionate reaction you or someone you know has had to something?

[00:02:53] Chris: Thank you so much, Rachel and Lucy. I’m actually so excited to be here. I’m definitely able to give an answer to that question. I remember once I was dancing in the cafe with my mum, just having a bit of a boogie, just a bit of a Saturday morning, just a little bit of a I don’t know, it wasn’t even that out there, actually. It was just moving my arms and stuff. And then my Mum was like, you can’t you can’t dance in public. And this was just after one of my episodes where I was almost hospitalised for bipolar disorder, like having an episode. And then I was just like because I was in that state of mind where I was just like, F you all. I was just like, no, you’re going to watch me now. And I think I did it even harder at the time. And I was just like moving around even more and stuff and did a few spins because I love to do a few spins. And then she got angry at me and then she stormed off. And then I went up to her afterwards and I said, Mum, I was just dancing, you got to just be a bit more light hearted.

And I was getting better. But I think it was just hard for her because I don’t know, my mom is a great mum, beautiful, but can be overprotective and worry about what other people think.

[00:04:11] Lucy: I feel like mums always cop it as getting, like, being the example of the disproportionate.

[00:04:17] Chris: Yeah, I think it’s because the reason why mums cop it with this disproportionate reaction question is because I think that we always want to be ourselves, but then when we become unwell, we become a different version. And usually mums are pretty switched on us to when things start to change. I remember when I first was going through an episode, I remember I was like in my room putting everything into the pyramids and baptising myself with oil. And then my mum came in and she just screamed like, what are you doing? What’s going on? Kind of thing. And she was really scared at the time, but I think was that kind of her viewing me in that state of mind, in that extreme state, she then went to get help and support from headspace.

[00:05:06] Rachel: So we are here to talk about extreme states or how to be with people who are experiencing distress. What does being in an extreme state mean to you, Chris?

[00:05:16] Chris: So I was diagnosed with bipolar when I was 19 and I’m very open with my diagnosis. I think it’s important to aggravate positive change in society by being yourself and being authentic. And I think for me, it’s an extreme state. As someone that’s experienced a living experience with bipolar disorder, I’ve experienced really full on mania and really depressed depression and then also in between, where things aren’t exactly quite one way or the other. One of my least favourite experiences of a state is like, when you’re feeling flat and it’s really hard to shift into one way or the other. And when you’re feeling flat, it’s like you just don’t want to do anything. And it’s probably my least favourite emotion with the mania. What that looks like is rushing thoughts because I think I’m almost like creating magic to myself. And I’ll often say strange things. I’ve often thought I was Jesus Christ reincarnated and often the chosen one. So that’s like the more of the mania. And then the depression is just feeling suicidal, feeling like you don’t belong in this world, feeling misunderstood and just really feeling quite sad and lonely. But I think that the mania is something that’s seen by everyone, because when you’re manic, everyone can see how you’re acting, whereas when you’re depressed, it’s not as noticeable. When I first was diagnosed with bipolar, I actually was depressed for about six months. I was doing a course in psychology, and I hated it, and I really wanted to do something in music, actually. And then after six months of being staying up all night till, like, 03:00, a.m. Crying because I couldn’t get my assignments in time, I went back to university, and then I was manic, and that extreme state was seen by everyone. It was really embarrassing for me at the time because I was in a uni course where I had a lecture at one stage, and I went in front of all of the people in the lecture theatre, and there was like, oh, you have to believe this and that. And I had this thing where I thought that you have to use your left and right hands. Like, I thought it was strange that human beings only have they usually only choose their right or their left. And I was like, when your brain becomes more in tune with everything in the universe and all this stuff, you’ll be able to use both hands. That was really, I guess, for me, looking back, that was extreme because it was publicised. And I think that often when you’re going through these states, you actually don’t realise you’re going through them.

[00:08:04] Lucy: So it doesn’t feel extreme at the time when you’re in them.

[00:08:07] Chris: Yeah, exactly. So I feel like it’s not until you come down from a high or a manic episode. Manic episode can be experienced in different ways by different people. But when you come down, it’s almost like you’ve been drunk or taken drugs and you’ve forgotten your night out and you got this hangover and you’re anxious about all the things you said and did.

[00:08:29] Lucy: Yeah. Does it feel like it’s not within your character when you’re in that? Or why? Do you feel anxious about what happened?

[00:08:41] Chris I think I feel anxious about what happened because it isn’t in my character. I’m an outgoing, charismatic, happy go lucky guy. But I think that definitely acting like you’re Jesus or God or that you know all the secrets of the universe, it scared a lot of people at the time. And that’s, I guess, how people become ostracised and they get pushed away. Because when you experience this extreme state, you think you’re it. You’re the chosen one. You got everything going on.

[00:09:12] Lucy: Yes.

[00:09:13] Chris: And then when you come back down to Earth, it kind of adds to the depression, like when you go into a depressive episode. Because I feel like it’s like because when I was 21 and I went through this one of my episodes, all my friends gone, they were not interested in me anymore. They were scared by how I was acting, and I think a lot’s changed. That was about ten years ago now, but I think that was something for me.I felt like that year, 2012, was funny, because that was meant to be the year that everything ended. The world was over. Yes, but that was the world was over for me. It was like, a horrible year for me. Yeah. And I felt really lonely, and I think I don’t know, I think that maybe people didn’t understand, but I do think people can do better. Yeah.

[00:10:10] Rachel: Well, I really want to hear more about how people can do better, but I was really interested in what you said, that coming down and feeling ostracised contributes to the extreme low. Is that right?

[00:10:23] Chris: I feel like that is something that definitely contributes, because you feel like you’re very alone, because you go through this experience where you feel like you’re connected to everything, connected to the universe, connected to.. You kind of have this feeling where you’re in tune, you’re in sync, and then to go through when you have the yeah. Like, I just feel like I used to literally go to McDonald’s or KFC every day, like, once a day. That was my way of coping. I didn’t have any friends at the time, and I was like, all right, is it McDonald’s or KFC today? Which one spin the wheel? Which one is spin the wheel? Exactly. And it was like there wasn’t a lot of joy in my life when I went through the depression. I think that depression is a lot harder to go through because you’re constantly trying to lift yourself up after you’ve been pushed away or ostracised or things like that. But the difference is that as I’ve gotten older and as I’ve gotten more in tune myself, and as I understand my condition more, I realise that whether I’m manic, whether I’m depressed, or whether I’m at a good level, like, where I’m feeling good, a lot of people call it baseline. It’s not my favourite term, only because I feel like baseline, it’s like a permanent baseline, like a permanent level of being. Like, when you’re stable, you’re only at this certain, which is not the case, I think you can have depressed days or manic days, or you might not sleep one night, and then you have the next day. You’re feeling like you got adrenaline rushing through you. But I feel like as I’ve gotten older and with psychology, I’ve realised that this is all me. Everything that I’ve been through, everything that I’ve been, whether it’s an extreme state of a high or a low, it’s still me. It’s just another version of me. And once I got to learn how to accept that, and once I got to learn that, I was like, you know what? I do have an underlying mental illness or I do have a living experience, it allowed me to kind of when I do go through depression now, compared to back then, Rachel, where I felt ostracised. Now I feel like I might just have a day where I eat some junk food and watch a movie and be compassionate to myself and learn how to treat myself better. Whereas back ten years ago, I just couldn’t stop thinking about how I acted in front of other people, if that makes sense.

[00:12:51] Rachel: It does make sense, yeah. So you’ve really learned to respond to yourself differently.

[00:12:56] Chris: I feel like that’s the thing. You have to learn how to respond to yourself differently in order to regulate yourself and in order to because if I’m sad now, I actually allow myself to be sad. I cry. I might put on a sad movie. I might listen to sad music and just cry. And I allow myself that because I feel like emotions are so important and feelings are so important. Whereas when I was younger, I used to be a people pleaser, and I used to kind of say that side of myself, the depressed side of myself, I never showed anyone, like, that side of myself that was up at 03:00 a.m. doing those exam notes or doing those whatever I was doing at Uni. It was different for me back then because I never showed my vulnerability.

I was always trying to keep that side of me away. Whereas now I think sadness is beautiful. I think there’s something beautiful about- what do you think about emotions? Do you think that they all have a place?

[00:14:01] Lucy: Absolutely. Like, I love a good crying session. Look forward to it.

[00:14:06] Rachel: Me too. So healing.

[00:14:07] Lucy: It is, yeah.

[00:14:08] Rachel: And human.

[00:14:10] Lucy: And human. But it kind of sounds like, Chris, that you’re learning more about yourself, or each time that it’s happening, it’s revealing something about you more. When we have the term relapse and things, it kind of implies that people are taking a step backwards, but it might actually be a step forward in getting to know yourself and healing. What do you think about that?

[00:14:32] Chris: I love that because I think that healing is a big thing. I think that we can be healing across our life, and I think that there’s no one time where we don’t learn, we don’t heal. And it was interesting because my psychologist, he said to me, Chris, every time you consider that you go and you think about, like, in quotation marks, like a relapse, you actually go through growth.

[00:14:54]Lucy: Yes.

[00:14:55] Chris: And the way he reframed that, it was very simple. But every time I think about anything that I go through now, like whether I’m on a high low, whatever, I think it’s just growth. Because every single time I’ve gone through something, like an episode, like I did that time, I was hospitalised, and the aftermath of that was really depressed, and I wasn’t in a good place. And I remember I was suicidal at the time, which was the start of 2021, and I was just like, I don’t want to be in this world anymore. Honestly, I just don’t know why I’m having to go through all these things. Like, I felt like a bit hopeless and a bit victim like. And then I ended up telling both my mum and my best friend and both had the same reaction, like they didn’t want to hear it, blah, blah, blah, that kind of thing. And I think I just was really firm. I said, no, you’re going to have to hear it, you’re going to have to listen to it, because this is the way I feel. And in order for me to process what I’m going through and accept what I’m going through, I need to tell you that I’m not feeling like I want to be in this world anymore. And I had to push through and both of them came with such support afterwards and everything like that. And over time, within a few weeks, I wasn’t feeling suicidal anymore. So I think that was for me. I took one of my psychologists, said, take a relapse is growth. And I just thought, you know what, I need to be a strong person, I need to be vulnerable, I need to tell people how I feel and I need to reach out because I’m going through a distress and I need to figure this out. So I feel like if you can kind of look at things in a different way. I feel like the episodes that happened, like end of 20w20 and 2021, and then later on in the year, I had another manic episode, but I kind of bounced back from them a lot quicker. And every time I’ve had some sort of episode, I’ve gotten to know myself better. I think it’s important for all of us as human beings to get to know how to regulate ourselves and how to cope in different situations and not worrying about how I’m perceived, but just focusing on reaching out.

[00:17:12] Lucy: Yes. Because it’s sharing the load with someone else.

[00:17:15] Rachel: Yeah, I was thinking the same thing. This might sound weird, but I was thinking it kind of feels like a bit of a gift to give your mum and your best friend to say, I need you to hear this. Just hear it. I need you to hear it.

[00:17:28] Chris: I think humans are very programmed to want to do the easy route, but I reckon that my nun, when I was growing up, he used to say to me, “Christopher, life wasn’t meant to be easy”. And I used to say to him, what are you talking about? It’s meant to be fun. It’s meant to be great, exciting and all this stuff. And then I got to adulthood and then I had a lot of responsibilities, like we all do, and I was just like, wow, he’s right. It wasn’t meant to be easy. And I believe in life you have to work hard on yourself. Someone that’s diagnosed with mental illness, automatically they’re thrust into a position where they have to work on themselves. But I think everyone has to have some sort of self care or some sort of awareness of who they are as well. Because if you kind of go about life thinking that the easy road is you have to kind of…

[00:18:19] Lucy: And thinking that everything’s just going to be given to you as well. I remember reading in the book The Road Less Traveled, and one of the first pages says along the lines of life’s not meant to be easy. But when you act like it is, that’s when the real pain comes in and the struggle. And I was like, oh my God, it’s so true. But if you go with the lens of actually, this isn’t meant to be easy. No one said it was going to be easy. Why am I thinking that? You kind of go with a different mindset.

[00:18:51] Chris: If you assume that everything’s always going to be easy, then you’ll be shocked every time something’s hard. And so every time you get to a point where something happens to you and you’re like, you won’t be able to ever deal with anything, it’s like, I have to bring my car to the mechanic, like next week and it’s going to cost me $800. Not what I would love, obviously, but it’s just part of life. I think that for me, because I’ve experienced these extreme states of highs and lows and everything in between, I’ve gotten to recognise that to surrender to the process of life a lot more, everyone’s different. I’m spiritual. I believe in God and the universe, and I believe in people attracting to each other because they’re like minded and things like that. I do think that when it comes to obstacles last week I didn’t know that I would have the obstacle of the mechanic. But then this week I did. And then I was like, oh, that’s just the way it is. I have an old car. That’s just the way it is.

[00:19:52] Lucy: Totally and I was thinking the same thing last weekend when it was nighttime, it was dark, it was raining, and I got locked out of my house and I was like, I had no phone, no keys to drive anywhere. And I was just thinking, I wish this wasn’t happening right now. All my neighbours got around me were like people coming over with ladders to get into my house. Everyone was banding together. So it’s like I was actually thinking when I got inside my house, I’m like, I’m really glad that happened because it reminded me I have really good neighbours and people are good. If that never happened, I wouldn’t have got that opportunity to chat with my neighbours.

[00:20:30] Rachel: I love that saying, cream rises to the top. Reminded me of with your neighbours, and people go to the top when they’re good people. I wonder what you were saying before. You think we can do better? When you’re talking about how we support people who are in extreme states, what do you think we can do better?

[00:20:49] Chris: I just wish that as a society, we were more inclusive and more prone to helping people feel like they belong or have a sense of belonging. I think about the Mean Girls film and how there’s this one scene where they’re like, don’t sit with us. And I just think we need to be the opposite. It’s like, I want you to sit with us. I want you to be involved. I went out clubbing on the weekend, and there was this man on the outskirt, and he was probably like twice my age or whatever. He was on the outskirt of the dance floor, and my friends are looking at him, and I was like, why don’t we just involve him and come over? And he was dancing with us. He got photos taken with us. People from the nightclub were taking photos of him with us. I was just like, this is so cool. This is so cute. And I just feel like people need to embrace others more. I just feel like along the course of time with social media and things like that, we all use our phones and we all kind of are disconnected in some ways. But I just wish that people made more of an effort, like with your neighbourhood. And I think that when it comes to people that are going through extreme states of mind, like, really depression, anxiety, or mania when I was going through mania, I just wish when I was younger, the people treated me like the same, but they just maybe said, oh, Chris, blah, blah, blah. I didn’t have the right friends then. The thing is that I bang on about a Vibe Tribe. So basically Vibe Tribe is essentially I believe everyone vibrates on a certain frequency, and I believe that people are brought into your life. And I think the thing is that when you have a Vibe Tribe, there are people that you support, and they support you equally. Everyone can find their people. And when you find your people, it should be that you’re compatible. So you get along most of the time, and if you disagree, it’s okay because they give you another perspective. I think that for me, I honestly think that in general, people can do better by being more supportive, by being more open minded and less judgmental and more curious. Asking questions like, what are you going through? I’ve told my family and my friends, if I’m going through stuff, to ask me, like, first, are you okay? And then if it’s like, yes, and then the second question, are you stressed? It gives people insight into the fact that you need support. Do you know what I’m saying?

For me, when my mum said, Are you okay? I might say yes. But then she goes, Are you stressed? I say, also yes. So is there anything I can do? I’m like, oh, can you just hear me out? I need to just vent about this situation. And it gives the kind of tools for other people to support me better.

So asking me questions about how I’m actually feeling rather than judging me and saying, oh, you seem bit racy, you seem bit flat, or you seem to this or you seem that. I think it’s good to observe, but it’s also good to be curious and ask questions. Does that make sense?

[00:23:55] Lucy:Absolutely. The curiosity is huge because I feel like when something becomes foreign to us, like maybe you saying that you feel like you’re Jesus Christ. Some people might freak out about know and then that is what stops the curiosity. But if you actually explore, oh, what does it feel like to be like Jesus Christ? You’re like, actually it feels amazing. Then there’s a whole different conversation that can open up rather than being fearful about everything all the time.

[00:24:22] Rachel: Yeah, well, you can’t be curious if you’re being judgmental. I think dropping judgment allows curiosity.

[00:24:29] Chris: I think that we need to be more aware of how we interact with others and be kind because you just really like it’s cliche, but you just don’t know what another person is going through. And it’s like the times that someone in the recent years I’ve had relapses so like 2020 and 2021 actually had not a relapse, but I called it a hiccup this year because I went and did I’m a part of a pilot episode of a TV show and we filmed on set for eight days straight. And I had the best time, but then I went straight back to work and then I don’t know, people started noticing things about me. Like I was acting a bit different, a bit strange, and saying some strange things and not able to regulate. This is only like four months ago, so these episodes can creep up on you at any point. And sometimes if they creep up on you big time, if you don’t listen to people and you just go about your things, it become a full blown manic episode. I didn’t realise it, but I overworked myself in the acting. In hindsight, I could have easily done the one day of acting and then not helped out. But I wanted to be on set and I wanted to feel the excitement and I did. I was so excited. I loved it and everything like that. And then my doctor said to me, I went and saw my doctor after there’s a few people at work saying, you seem to be different and family and friends. And I went to my doctor and my psychologist and he’s like, you’re just being you. You’re just excited. And I don’t want to change your medication because I want you to feel this excitement. I don’t want to dull this down for you, which is a really good thing. Most of the time, people that are like doctors, they might want to prescribe more medication to kind of dull the senses. But he was like, I don’t want to change this for you. And I honestly think that I would not do it any differently. I don’t regret what I did because I got to experience what I was like on set. I’ve got a vibe tribe where I feel supported even when I’m going through these episodes, which is so different to how I used to feel. And that’s the thing. It’s like not everybody with mental illness has this kind of support.

[00:26:39] Rachel: It really makes me think how the importance of feeling like you belong somewhere or belonging and acceptance allows that sort of non judgmental support to happen.

[00:26:50] Chris : I think people are getting better at becoming more supportive. I think, for sure it’s not all bad. But I do think that the more that we can learn about ourselves, the more control that we have. If you’re listening and you’ve got someone that doesn’t know how to support you, maybe like asking them to ask you those questions like, are you okay? Are you stressed? Is there any way that I can support you? Do you want me to listen or do you want me to give advice? Even that question, do you want me to listen or give advice is really powerful because sometimes you need advice and sometimes you just want someone to listen. We’re not fragile. I think that we might have gone through things that make us feel fragile sometimes, but we’re not permanently fragile and chronic that we can’t figure out life and that we can’t because when things are provided for people, they’re acting like they’re disabled. It just makes the people feel like that they can’t do anything without the system and they can’t move on with their life. I wish that more people would enable people to the point where they have autonomy, where they have the freedom to take risks. Because a lot of the time when people are depressed, they’re like, what do I do with my life? What do I do? The best thing I felt like in my life, whenever I’ve gone through an episode, an extreme state is to try. Try something different, try something new. When I was going through my stuff, I decided, you know what? I’ve been all my life, all my life saying to people, oh, I won’t do a music degree. I won’t do this or I won’t do that, because apparently those degrees don’t make you any money. Which is the reason why I was encouraged not to do them. And I ended up doing psychology, which I hated. And then I ended up getting out of COVID and being like, let’s do what I’ve always loved. And I think hobbies or a creative outlet are so important for every human. It doesn’t matter whether you’ve got an illness or not. So I did acting lessons, and then I did an acting workshop, and then last year, I did singing lessons all last year because I was like, I want to record my own song. So these things I hadn’t done since I was, like, in high school because I kind of pushed them aside. And it’s funny because when I was diagnosed with bipolar, I felt like anytime I was manic, I was like, oh, Chris has got makeup on. Chris is unwell. Oh, Chris is doing his nails. Oh, Chris is doing his eyelashes. You know what? I’ve always been like that. I’ve always been someone that’s eccentric. Now I finally feel like I can be creative and free, and I can be Chris and not related to the mania. That took a long time to segue a little bit. I actually think it’s a gift. It’s funny because a lot of people probably would look at these experiences and think, this is not a gift at all. This has been torture. I’ve had to go through extreme highs and lows. I call it my superpower. I call myself a bipolar bear. I’ve kind of owned it and took an ownership of it and accepted it. And I’m happy to talk about it. And even with my past, I can talk about all my things. And I’m healed because I had, like, three years of therapy, talk about all this stuff. I’m not affected by my past anymore. And even when I wrote the song, the reason I wrote the song was to overcome was about overcoming abuse. And it was about standing tall, rising from the ashes, and becoming a bigger, stronger, better version of myself in hope that people that will listen to it also felt like that when they were listening to it. And so I actually think it can be a superpower. And what I mean by that is, because I’ve experienced these extreme states, I have the ability, like, with my acting, for instance, because I’ve been really low and really high, I can funnel that into acting into different ways. It’s always seen, mental illness as a negative thing. But I’ve written songs when I’m manic and I’ve done creative outlets, and I don’t think it’s all bad. I think that sometimes if you get better at knowing yourself and riding the wave and people learning how to treat you better, it’s also a really positive thing as well.

[00:30:47] Lucy: So we wanted to end the episode, all episodes, by asking if you’ve seen anyone sit with distress?

[00:30:55] Chris: Well, oh, there’s been a few, actually. So one time when I was going through manic episode, my cousin, I went and stayed with him for about a week, and he was very supportive. He never kind of talked to me in a different way. He just spoke to me as if everything was all good and I’ve had a few of those experiences. There’s someone else as well, another friend that we did a video call, and he was playing guitar, and I was singing to him, I don’t know, probably for like, an hour, but I was just singing away. And he’s like, do you remember that time when you were manic Chris and I sang on the guitar with you over video call? It’s like, oh, my gosh. I’ve been very lucky and privileged to have people around me that have been there for me and have supported me.

[00:31:40] Lucy: Being there for someone, meeting them as they are is such a easy thing to do. Like, you might be a little bit more energetic or maybe a little bit more down, but you’re still you. You’re still Christopher Stefano.

[00:31:55] Chris: Still the same person, just on the side.

Thank you so much for having me.

[00:32:01] Lucy: Thank you for coming. This has been epic.

[00:32:03] Chris: Thank you so much, both of you.

[00:32:05] Lucy: Thank you, Chris.

What a fun and energetic episode with the one and only Chris Stefano.

[00:32:13] Rachel: It was, wasn’t it? I adored this conversation.

[00:32:16] Lucy: Yeah.

[00:32:17] Rachel: It left me feeling a great amount of joy.

[00:32:20] Rachel: Me, too. I love the part in this episode where Chris talks about following your passions and how important that is when he said he was always interested in acting but was sort of dissuaded from doing that because people didn’t think it was a good career path. But I just feel like a lot of people in general, if you live your life in accordance with what you think other people want from you that can contribute towards such poor mentality and depression and anxiety.

[00:32:50] Rachel: Yeah. I wonder how many people could relate to that in different ways across their lives. There’s definitely to lesser extremes ways, subtle, but when there’s this disconnect with how you see yourself and how you think the world around you sees you can be really hard to reconcile. I got to say. I’ve got to make comment about the Vibe Tribe. I’ve always thought about how important it is to feel like you find your place and how hard it is when you don’t. Yeah, but that word Vibe Tribe, I will plagiarise that all the time now.

[00:33:30] Lucy: I also just want to shout out that Chris has followed his passions and has released a song on all platforms called Like a Page, which is an awesome dance track for those wanting to have a bit of a boogie.

[00:33:44] Rachel: It is excellent. I had the absolute joy of riding in the car back from the recording with Chris, and he played the song for me, and it was so groovy.

[00:33:55] Lucy: So catchy. Get ready for an ear-worm.

[00:33:57] Rachel: He’s done a great job, and congratulations to him.

[00:34:00] Lucy: I hope you enjoyed the episode and I hope you enjoy like a Page.

[00:34:18] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

Come and listen with:
Lucy (She/Her) – A big fan of pickleball, ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – Stability in the storm

[00:00:01] LUCY 

This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] RACHEL

discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] LUCY

In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] RACHEL

discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] LUCY

The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] RACHEL

Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] LUCY

Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question, how can we respond to distress with greater compassion and humanity?

Welcome back to the extremely human podcast. In this episode, we chat with our guest, who describes how it feels to experience psychosis. We talk about what they found helpful and not so helpful while being in that state, and what life after psychosis has looked like in their life. We touch on the different ways phenomena like psychosis can transform people and how we can better care for people going through psychosis.

[00:02:40] LUCY

Here we are, back in the studio.

[00:02:42] GUEST

Thanks for having me.

[00:02:43] RACHEL

Oh, we’re so lucky to have you with us. I can’t wait for this conversation.

[00:02:47] LUCY

Me too.

We want to kick off the conversation first just by asking have you or anyone you know had a disproportionate reaction to anything?

[00:02:59] GUEST

I have a very close friend who convinced herself that she had Botulism when she made olives from her olive tree and assumed that they’d been contaminated in the process. So when she tried an olive, there was numbing of her face and tingling and she just goes, oh, my God, Botulism, and rushed to the ED, who sent her home without the diagnosis. And then she was like, no, this is like, definitely botulism. Went back to the Ed and demanded to be seen again. She could have actually had Botulism, so it was sort of fair enough. But it was also just likelihood of it having Botulism from the olives was actually quite small.

[00:03:49] LUCY

Just a lick of the olive.

[00:03:51] GUEST

Just a lick of the olive and, like, numb face.

[00:03:55] LUCY

What actually is Botulism?

[00:03:59] GUEST

I think it’s a poisoning that happens through contaminated food and water.

[00:04:03]LUCY

Right, okay. So what was the numbing of her face?

[00:04:08] GUEST

I think it’s a symptom.

[00:04:11] LUCY

Okay. She might have been on the money then.

[00:04:12] RACHEL

What happened to all the olives?

[00:04:15] GUEST

Yeah. I don’t know if they got thrown out or potentially given away after they were deemed clear.

[00:04:24] LUCY

Love it. Thank you. Great example.

[00:04:26] RACHEL

Thanks again for being with us today. As you know, we’re here to talk about extreme states.

Maybe we can start by you telling us a bit about what your experience of an extreme state is.

[00:04:38] GUEST

I have experienced many different kinds of extreme states, but what I would associate mostly with that term is psychosis. I started experiencing psychosis, like, seven or eight years ago. Those experiences I would describe as an extreme state because it’s very discombobulating and disruptive. That’s the thing about psychosis. It’s really like the whole spectrum of thoughts, like, going traveling through your mind at the speed of light over however many days or weeks. I can piss myself laughing when I’m psychotic sometimes because whatever’s going on in my head is just so hilarious and I’m the funniest person in the world and I’m laughing to myself, but in the same day, I’ll be terrified of other things going on. You very much sort of lose touch with reality, in my experience. I lost touch with reality the way I’d always known it to be and started perceiving and thinking in sort of disordered or different ways.

And that in itself became quite an extreme experience.

[00:05:55] RACHEL:

Wow. I’m thinking about the word discombobulated.

Really makes sense when you describe it like that. Yeah. So that sounds maybe confusing.

[00:06:07] GUEST

Yeah, I mean, it’s definitely confusing. I think it’s confusing from the outside and the inside because sometimes you lack insight in a psychosis and you could be thinking, all of these things in my mind are happening and be very absorbed by thought or those feelings. In that sense, it is confusing. I’m sure it would be very confusing to see someone psychotic and not be able to tap into their experience of reality either.

Maybe that’s even more confusing when you’re looking at it from the outside than experiencing it on the inside.

[00:06:45] RACHEL

Maybe.

[00:06:46] LUCY

Did you know that you were in that state of mind while you were in it? Did you know that it was different to how you usually perceive things, perceive the world?

[00:06:54] GUEST

For me, it wasn’t as soft or as easy as having certain thoughts and going, okay, these thoughts aren’t real. Because I feel like if I had that capacity, I might have been able to switch out of it. But often I’ll go so fast and hard into thoughts that are disordered or within an unshared reality. It’s not until I’m sort of intervened, hospitalised or medicated or it’s not until a certain point of recovery that I think back and realise that those moments were me in a psychosis, if that makes sense.

[00:07:33] LUCY

Yeah, absolutely.

Because it takes you like you’re sort of in it like a fish that doesn’t know it’s in water.

[00:07:41] GUEST

Yeah, it’s sort of like the mental environment that you’re swimming in. I think what makes it such an extreme experience on one hand is that people really see that as a problem when you’re not thinking or behaving sort of normally people. Really in my experience, I think I’ve really not been allowed to go through that because institutionally anything that’s sort of like out of a normal spectrum would be considered towards the side of illness. So you’re treated in that way. And I’m not sure that some of my experiences would have been less extreme if I could have been held in a different way when I was going through certain psychological moments, if that makes sense.

[00:08:27] LUCY

Yeah, absolutely. What do you think from your experience? Are the things that are helpful when you’re in that mind state? Because you said before it’s also hard for people who are watching someone who is in that state, but they can also help and they can also be there. So when you were saying that if you were held in a certain way, you might have had a bit better of experience, were there things that people did while you were in that state that helped you? Even just small gestures.

[00:08:59] GUEST

I think sitting with the situation can be really helpful rather than if someone has the capacity to sort of sit with you and be calm and be compassionate and be sort of like a stability in the storm, that can be really helpful. But I also think that it probably looks different in every scenario and depending on each individual and what they’re going through. And one of the things that I think everyone could do to support people going through such an extreme state would be to destigmatize their understanding of mental health and sort of appreciate that we have a whole spectrum of psychological experiences, and it’s not that some are better than others. And sometimes life’s hard. And your thoughts and your mind and your psyche need to express that, and you need to be able to go through your own problems. You can’t just suppress them. To be allowed to sort of exist in that space I think is really important. I think we should spend less time trying to shut down people’s symptoms rather than exploring them.

[00:10:17] RACHEL

I feel really moved. Really interesting point you made that sometimes how people responded to you in those moments actually made it more extreme for you.

That brought up lots of thoughts for me around feeling isolated or alienated and maybe that’s what explains how it becomes more extreme. But they’re my thoughts. What are yours about that?

[00:10:42] GUEST

Well, already from the get go, being in a psychosis is quite an isolated experience. I think it’s probably quite common to withdraw socially or from the workplace or from study or when you start going through those kinds of experiences. And also in recovery. It takes a lot to recover after you’ve been in an extreme mental state. So sometimes you have to take a sort of put a pause on all your goals and your other things in your life. So that can also feel sometimes like a withdrawal from the world or something. And that can sometimes be isolating. I think it also can be really helpful to, if you go through something extreme to put a pause on life and take time to do the healing. You can learn so much from an extreme mental state when you really take time to practice the self care that it takes to recover. I think that’s actually been a really amazing positive that’s come out of going through something so distressing. But yeah, it can be isolating if that answers your question.

[00:11:50] RACHEL

It does. Do you think that fear plays a role in how people are responded to you?

[00:11:58] GUEST

Yeah, I think fear is so big when it comes down to mental health.

I think it’s almost so stigmatised in society to go through a mental health rupture. You generate fear around going through it in the first place. It’s not like, oh, I’m expressing and experiencing something difficult right now. It’s like oh my God, I’m not normal, what’s going on already? There’s fear associated with feeling like your mental health is not in a certain way.

And then I think because there’s that embedded fear, it’s reflected in different levels of the mental health system, of whether you have a friend or a family member going through something. I think I’ve seen people become isolated to a point that’s unnecessary because of a misunderstanding of what a mental health condition is and how much fear we need to attach to it.

[00:13:03] RACHEL

What do you think? Some of those things that we associate with mental health conditions that generate that.

[00:13:10] GUEST

Fear, I suppose a really common thought would be or like part of the stigma would be that people who are going through psychosis or who are schizophrenic are violent and aggressive.

But I think statistically we’re actually more likely to be violated than to commit violence. I think people make assumptions once they hear the word or the diagnosis and maybe someone’s going through a hard time, it doesn’t have to be diagnosed. But I think, yeah, sometimes people can make assumptions about what that person’s going through and not resist the urge to lean in and maybe that person’s pushing other people away or pushing the world away. And so it’s very hard. It is a very hard space to navigate.

[00:14:02] LUCY

I think a lot of people don’t understand or don’t realise that the person who’s going through the extreme state, they’re often very scared themselves. We don’t always keep that in mind when we’re caring for people that are in that state.

[00:14:15] GUEST

Yeah.

[00:14:16] RACHEL

What will we be doing differently if we were keeping it in mind?

[00:14:19] LUCY

I’d just like to see people having more conversations with the person who’s going through that and not treating them any differently. I think just being kind and compassionate, but I think sometimes we can look at people in those states and perhaps be a little bit condescending or maybe even treat them like children.

And I think from my own experience of being in psychosis is that one of my best friends at the time, she never treated me any differently. Even when I was in my heightened state of psychosis, she would still take the piss out of me a little bit. And even though I was in a different state, I still appreciated that and I could still laugh at what she was saying. And I knew we were just having a little bit of banter. And that shouldn’t change. Like, your humour and stuff shouldn’t change when someone’s gone into a different state. You can still feel it.

[00:15:11] GUEST

I agree. I think the best experiences I’ve had is when people just arrive right with me and treat me the same or can bring like a lightness to the situation because they know you and they trust that you are who you are. Totally. It’s like people who think that you’re not who you are anymore when you’re going through that. It’s like, oh, I don’t know this person.

That’s the damaging sort of reaction, I think. And they’re like, I don’t know who you are. I don’t know. I mean, maybe that’s a valid reaction for some people. It is a very hard situation to navigate. I know that sometimes when I’m in psychosis, I don’t behave in the same way to my friends that I would normally. So it’s very hard for them to be like, well, they’re human. They’re going like, what does she think of me? Or am I not a safe person for her? Or should I not be here?

[00:16:05]RACHEL

It just makes me wonder that those that can experience some consistency in how people engage with them, it might keep you connected yourself to that part of you as well, that might otherwise feel a little bit hard to reach.

Can we talk a bit about what you think are some other helpful things that others have done or might do when you’re in an extreme state?

[00:16:33] GUEST

Just being open to your experiences has been very liberating for me not being too shy to own the experience, because that’s also been quite a long journey of coming to terms with the fact that I had this experience. And not to just push it away and wish that it had never happened and try and move on as if nothing had happened and try and catch up. Like for a long time I felt like I was behind everyone else because I had had years of mental health problems and I really wanted to have everything my friends had. But now I see that the psychosis was something I needed to go through. It’s helped me understand myself in a deeper way and it’s helped me learn how to look after myself better than I ever could and it’s helped me have insight into myself and other people as well. It’s the insights that I could never have had if I hadn’t gone through this experience. You’ve really got to embrace the whole experience for what it is, if you can. And that really is quite empowering. It can be as well.

[00:17:49] LUCY

I think that’s such an important all of that was so important. I think there’s this idea when we talk about recovery is like there’s almost like this underlying message that you have to get back to the person that you were before it happened and there’s a lot of pressure to do that fast. Like you were saying before, it’s really important to have a pause after you’ve gone through something like that because it’s life changing. It changes you for the rest of your life whether you want to admit it or not. But I feel like a lot of people when you come out of that, it’s sort of like, oh, so when are you going to get a job? Why is that the first thing that we’re trying to get back to? Because as you said, it’s part of how we evolve and it’s part of how we grow. And if we’re always trying to shut down these experiences for people or not letting them run their course, then we’re missing an opportunity to become better because these experience can make you better as a person.

[00:18:46] RACHEL

I really like the concept of adversity.

Overcoming such adversity really does enable an opportunity for such self discovery or self healing that many people go about their lives not really having.

[00:19:01] GUEST

I think psychosis. In hindsight, I would never wish it upon anyone, and I really hope I don’t go through it again. But it sort of was like the crisis that I needed to start up again in a new way and sort of go back to square one and building myself and understanding myself all over again so I could exist in the world in a more authentic way. And I think that’s part of the journey that’s happened. Even though psychosis is just the most extreme thing ever, like psychologically on one hand, and then if you start behaving strangely, it can be very extreme in that way too. So it’s not like an easy emergence, but it can be very constructive as well as destructive.

[00:19:45] RACHEL

Well, some people have I’ve heard a lot of people refer or maybe not a lot, but some people refer to it as like a survival response. It’s kind of your mind’s way of calling out something or helping you to kind of express something that you don’t know how else otherwise to express or resolve.

[00:20:06] GUEST

It’s almost like your psychology is like expressing itself without you choosing that. Psychology, I think, is something we don’t fully understand and is very mysterious. I think it’s important to embrace all of that, though, because by limiting what’s normal, what’s functional, what’s acceptable, we really suppress people’s natural, individual, unique psychology. I think all the negative thoughts and negative things that are experienced in psychosis can be transformed into positive thoughts with potentially in the right situation, if you are handled in the right way.

[00:20:45] RACHEL

When you say handled in the right way, in those moments that make that possible, what do you mean?

[00:20:52] GUEST

I suppose at that point, I’m thinking of, like, hospital or I mean, I’ve been to hospital many times. I was hospitalised once in Indonesia, and that was a really interesting experience because I was literally put behind rusted metal bars with a squat toilet in the corner and, like, a metal bed in the side and a camera watching

RACHEL

Gosh, that does sound like prison, doesn’t it?

GUEST

Yeah, that was like, prison. And I just think that was very reflective of the whole idea behind mental health psychiatric wards. It’s like a place to be monitored.

[00:21:22] LUCY

It comes back to how we were talking in previous conversations about it almost feels like you’re being punished for going through something that you can’t control. You’re meant to be there for healing, but then it feels like, is this a hospital or is this a prison? Have I done something wrong?

[00:21:42] GUEST

Yeah. And I think sometimes you can feel like you’re being incarcerated by being in hospital because you’re put on a community treatment order, which means you are medicated enforceable by law, and you have to be treated. And it can feel very restrictive and controlled and enforced. And those only exacerbate the symptoms of psychosis. It’s not the right environment for someone who’s going through something so sensitive and extreme.

[00:22:12] RACHEL

It feels like it needs to be softer and gentler.

[00:22:15] GUEST

Oh, it’s totally hardcore. It’s like a very hardcore experience.

[00:22:18] RACHEL

Well, the experience of the extreme state, but also the experience of how people respond to that is hardcore.

[00:22:26] GUEST

Yeah, because it’s like it’s perceived as such a crisis. I’ve often been, like, entering into a psychosis, and then only when it’s gotten so extreme is there intervention. If there was, like, more facilitators maybe, of sitting with psychosis in those earlier stages, I’m sure it could be those ultimately extreme scenarios could be avoided. I think it’s really about deepening our understanding of the human experience and allowing the human experience to be whatever it is and not trying to suppress it into something that it’s not.

[00:23:06] LUCY

So we often hear about what happens during psychosis, but we never really get to see or hear about what happens after psychosis. What does it look like for you in your life?

[00:23:19] GUEST

Recovering from psychosis involves a lot of getting back into life in different ways. I’ve made lots of changes in my daily routine or in my lifestyle, learning about medication along the way and how to help my body cope with it. Because it is quite a heavy thing to put into your body, knowing when to rest and when to tap out and when to just take time for yourself, which is really important when you’re recovering from psychosis, because doing a million things can even if you feel like you want to get straight back into it, taking the time is really important.

Reflecting forgiving yourself for doing embarrassing things or doing wild things. And sometimes you have to forgive other people in your life for reacting in a way that wasn’t good for you or not treating you in the best way, making your relationships count so that you have a community around you that supports you in all your forms and states and who is happy to see you well and thrive. I do a lot for my health now. I do talk therapy and I do acupuncture and I have people in my life that really help me dig deep into my history and my life. And they help me make connections between my childhood and my day to day life and why I ever became psychotic and what goes on in my psychosis. And making those connections is really healing and really encompasses the whole experience. You have to be really strong to get through it. It requires an inner sort of strength that I think everyone has and it’s like one of those things that helps you tap into that.

[00:25:13] RACHEL

I guess the thing that keeps coming up is just that forgiveness and compassion is really impactful.

[00:25:24]GUEST

Yeah, I haven’t fully recovered or anything. I’m always trying to be vigilant about maintaining balance.

[00:25:36] RACHEL

We try to finish these conversations with this last question. I wonder if you can tell us a story or about a situation that you’ve experienced where you think someone around you has handled distress very well.

[00:25:54]GUEST

I would just come back to my friends, different friends, have just really been there without judgment and have been through some really hard experiences with me but have gotten through and they’re still here with me and we have great connections now. And there’s many scenarios where I’ve had a friend take me to get a depot or come and visit me in hospital.

They’ve advocated for me and worried about me and kept tabs on me even if I’ve disappeared.

[00:26:29] RACHEL

So got this thought about really just hanging in there and being present in your life and riding the waves.

[00:26:37] GUEST

Yeah.

That was such an epic conversation,

RACHEL

Wasn’t it?

LUCY

It was. I just want to thank you so much for doing this podcast with us because you’ve been such a big part of the journey of creating it as well. It’s not the easiest topic to talk about, and I think the way you articulate this experience is going to be very helpful in helping reduce some of the stigma which you spoke about. And you can tell that this experience is definitely giving you so much wisdom because you’re definitely wise beyond your years. So thank you for sharing that with us today.

[00:27:11] GUEST

Thank you.

[00:27:14] RACHEL

Wow, Luce, I really feel very grateful to have had the opportunity to speak with them with this guest. And it’s a really rare opportunity for me to be able to really talk to someone about life after psychosis.

[00:27:28] LUCY

Yeah. You don’t really hear about it much, do you?

[00:27:30] RACHEL

It was really incredible to hear that journey. What I really felt grateful for was what I heard was this emerging self compassion that happened for this guest along the way. Really inspiring in many ways, and some bit of upsetting parts to that story as well.

[00:27:54] LUCY

One of the things that stood out for me about this episode is when they talk about they wouldn’t wish that experience of psychosis on anyone, but felt like it was their crisis that they needed to start again, start afresh. And that felt so hopeful for me. Because you don’t really hear it.You always hear the negatives about psychosis, which are granted, but it’s nice to hear someone speak about it in a way that you can transform that.

RACHEL

Yeah, that’s true. I think that maybe is where this idea of self compassion came from. But I also think it makes me think about the Buddhist ideas about adversity.

[00:28:33] LUCY

Yeah. Lotus in the mud.

[00:28:37] RACHEL

But just that anyone that moves through such adversity is going to possibly come out better for it, have at least grown or developed as a person and in their relationship with themselves.

[00:28:52] LUCY

I’d love to see that more conversations like that happening, rather than, oh, you’re unwell. You just need to get better and get back to where you were, rather than, no, use this. Use this to move forward. And evolve.

[00:29:07] RACHEL

Yeah. Evolve is a good word.

[00:29:10] LUCY

Evolve. I’ve heard people in the peer movement. Instead of talking about recovery, they talk about evolving. And that really changed things for me.

[00:29:20] RACHEL

Obviously, I’ve heard about discovery instead of recovery, and I understand that, but that’s the first time I’ve heard evolve or as part of an evolution in the life of a human. I guess I’d just kind of wrap up by saying how appreciative grateful I am for this guest and how courageous I feel it is to come and share these kind of experiences with us and with the world. Really.

[00:29:46] LUCY

So brave. Because it is still so stigmatised. And to do that is so much courage. And to do it with such eloquence.

[00:29:54] RACHEL

Yeah.

[00:29:55] LUCY:

Huge shout out. To those listening to this conversation, hope you’re taking care of yourself. Hope you get as much out of this conversation as we did. Thanks for listening.

[00:30:25] Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

Sometimes as humans, we have experiences that aren’t shared or understood by others. Often these experiences can feel extreme, scary, unreal or even euphoric. Experiences like psychosis, depression, grief and addiction.

Here is a little taster of highlights from some of the conversations Lucy and Rachel have had so far with incredible humans who vulnerably share their different perspectives on these ideas.

Come and listen with:

Lucy (She/Her) – A big fan of pickleball, ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – Extremely Human Trailer

LUCY    This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might wanna visit another podcast and come back to us another time. 

RACHEL    discovery college acknowledges the traditional owners of country throughout Australia and recognises the continuing connection to lands, waters, and community. We pay our respects to Aboriginal and Torres Strait Islander cultures, and to the elders past and present. They have never ceded sovereignty.

LUCY    In this podcast, we share stories that help us learn from each other, connect us, and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people. 

RACHEL    discovery college acknowledges the views shared in these podcasts are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

LUCY    The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

MUSIC

RACHEL  This podcast series called Extremely Human Looks at the profound experience of extreme states from both personal and outsider perspectives. When we speak about extreme states, we are exploring a more humanistic way to describe and understand people’s experiences that aren’t always shared by others.

LUCY  Through sharing stories, we strive to understand and describe the unique journeys that may feel unusual, confusing, distressing, or even wonderful for individuals. Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief, and addiction. As we have conversations with a variety of people, we explore an important question, how can we respond to distress with greater compassion and humanity?

MUSIC

RACHEL  The Extremely Human Podcast came about because we started to realize there were many untold stories about extreme states that needed to be heard about what had been helpful to people and what hadn’t.

LUCY    We discovered a theme about the importance of compassion and here are some of the snippets of what we heard.

JAMIE    The more I was able to spend time with people in extreme states, the more I realized what a naturally human experience it needs to be viewed as in order to be helpful in that space. So as a clinician, I think we spend time around people and we find ourselves wanting to find the on and off switch at times to just help, to change, to fix professionals. Um, in general, and you know, this is without judgment at all, but can see distress as a black and white state. Respond according to the book and apply the theory and the knowledge, the low and slow and the de-escalation. And sometimes de-escalation is not always the best first thing to do. If someone has an experience that needs time to expel itself, to exhaust itself or, or to simply have that distress expressed in a way that they feel they need to in the moment.  Then jumping in with de-escalation and you know, tell me how you feel and all that sort of good stuff that has its place. I think sometimes rushing to that approach can be perhaps sometimes missing the human element of, of what’s happening in front of you with someone in distress. You know, how do you be a human first and a professional when it’s required? To me, that’s the order that, um, for my own professional way of working, that to me, that’s what needs to happen is I need to be in the room as a human being with professional skills. But if my skills walk in before I do as a person, I’ve probably lost that person.

GUEST     I was hospitalized once in Indonesia and like that was a really interesting experience. ’cause I was literally put behind like rusted metal bars with like a squat toilet in the corner and like a metal bed in the side and a camera watching in the room. Sound like prison, doesn’t it? Yeah. Yeah. That was like prison. And I just think that was very reflective of like the whole idea behind mental health. Like psychiatric wards, it’s like a place to be monitored. Sometimes you can feel like you’re being incarcerated by being in hospital because you’re put on a community treatment order, which means you are like medicated, enforceable by law and you have to be treated and it can feel very restrictive and controlled and enforced, and those only exacerbate the symptoms of psychosis. It’s not the right environment for someone who’s going through something so sensitive and extreme. I think it’s really about like deepening our understanding of the human experience and like allowing the human experience to be whatever it is and not trying to suppress it into something that it’s not. 

PAUL     Yes, I think there is a problem that in our western culture, I believe that over a period of time, lots of emotional distress or mental distress has become too medicalised and it’s leads to a real narrowing and of being able to help people. And it’s also very, I think it’s part of our culture too, which is very individualistic and, and the responsibility for everything lies within the individual. Um, I think it causes heaps of problems because it’s particularly often leads to unhelpful solutions like that an expert knows best, that drugs are the way to help with these things. Only that there’s some underlying medical problem, which is usually not the case. I think things are improving to some degree. And I think the main issue is trying to involve as many people as possible in decisions like this. In the past what happened to people was a much more secret, much more things against their will without them really understanding why. Um, and also families felt very shut out of those decision-making processes because the medicalisation puts the problem in the person and the responsibility with the expert. Whereas if it’s more shared decision making with people that love the person and the person, I think that even though it doesn’t sound that different, I think it makes a big difference.

CHRISTOPHER    I think that for me, I honestly think that like in general, people can do better by being more supportive, by being more open-minded and less judgmental and more curious. Asking questions like, what are you going through? Like I’ve told my family and my friends, if I’m going through stuff to ask me like, first, are you okay? And then if it’s like, yes. And then the second question, are you stressed? If you are listening, like, and you’ve got someone that doesn’t know how to support you, maybe like asking them to ask you those questions. Like, are you okay at, are you stressed? Like, is there any way that I can support you? Do you want me to listen or do you want me to give advice? Yeah, like even that question, do you want me to listen or give advice is really powerful because sometimes you need advice and sometimes you just want someone to listen. So asking me questions about how I’m actually feeling rather than judging me and saying, oh, you seem a bit racy, you seem a bit flat. 

RACHEL    Well, you can’t be curious if you’re being judgmental. You, it’s, you know, I think dropping judgment allows curiosity.

ELSA    I think especially when working with others or talking to others. And when I think about sort of the conversations I’ve had, sometimes you think, oh, why is that person feeling so upset about that? Or like, um, expressing themselves in that way. And I think we do need to remember that there’s so much that might be different and that we are different. We, we are individuals, we will respond differently. Sometimes we, we sort of judge that response that what we experiencing, but what we haven’t understood is the meaning behind it or what’s gone on for that person. Yeah. And I think that is actually sort of quite relevant and we don’t always spend that time asking or understanding. Yeah. And, and I think if we did, then maybe we’d be just as excited or just as upset or whatever. Yeah. And I think there is something about, you know, that sort of understanding or just being with that person and connecting with that person. That’s what’s so important.

MUSIC

LUCY    Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

In this episode, we speak with Jamie, a social worker in the mental health world. Jamie shares his unique perspective on what it’s like to experience his own mental health challenges and how that’s shaped the way he now works as a clinician and a person. Jamie talks about burnout, knowing when to take a pause and drawing on our humanity when facing distress.

Come and listen with:
Lucy (She/Her) – A big fan of pickleball, ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – We’re only human

LUCY    This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might wanna visit another podcast and come back to us another time. 

RACHEL    discovery college acknowledges the traditional owners of country throughout Australia and recognises the continuing connection to lands, waters, and community. We pay our respects to Aboriginal and Torres Strait Islander cultures, and to the elders past and present. They have never ceded sovereignty.

LUCY    In this podcast, we share stories that help us learn from each other, connect us, and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people. 

RACHEL    discovery college acknowledges the views shared in these podcasts are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

LUCY    The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

MUSIC

RACHEL    Extremely human is a conversation about the profound experience of extreme states. When we speak about extreme states, we wanna explore a more humanistic way to understand people’s experiences that aren’t always shared by others. 

LUCY    Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief, and addiction. As we chat with a variety of humans, we explore the important question, how can we respond to distress with greater compassion and humanity? Welcome to the first episode of the Extremely Human Podcast. My name’s Lucy.

RACHEL   and I’m Rachel. In this episode, we speak with Jamie, who’s a social worker in the mental health world. Jamie shares his unique perspective on what it’s like to experience his own mental health challenges and how that’s shaped the way he now works as a clinician and a person. Jamie talks about burnout, knowing when to take a pause, drawing on our own humanity when facing distress. Just a little shout out the guitar music that you hear throughout this episode is also by Jamie. Really hope you enjoy the episode.

MUSIC

RACHEL      Welcome, Jamie. Uh, thanks so much for joining us today.

JAMIE         Thank you for having me.

RACHEL      I wondered if you could tell us about yourself.

JAMIE    Uh, my name is Jamie and I’m a social worker. I’ve been working in the mental health sector for, um, close to 15 years, and mostly working in youth mental health for the last decade. I’m happily married, father of two, and absolutely a adore a family and love cooking, play guitar, try to surf. I’m a comic book geek, um, and proud of it, . And yeah, I’m really excited just to be here today to talk about this stuff. I think it’s a cool idea. Yeah,

RACHEL    We’re pretty happy to have you here too.

LUCY    I first wanna start by apologising for the state of my voice. I was, um, at a music festival on the weekend, and speaking of extreme states, there were many people there in an extreme state.

RACHEL    I bet there were. 

LUCY    Yeah. the good kind. So we wanted to ask everyone this question before we start the podcast. This is a bit of a warmup question, and feel free to answer it as lightly or as deeply as you choose. So the question is, can you tell us a disproportionate reaction you or someone you know has had to something?

JAMIE    I can. So I’ve got two examples that I’ll offer up. The first one is to do with my children. My son, who’s five years of age, and recently we were at a party, a family party at lunch, and he’d forgotten to bring his sonic the Hedgehog toy. He completely lost control of his emotions and had, I hate the word tantrum, but if the shoe fits, sometimes you gotta wear it. He really lost control of his sense of surroundings, of his sense of boundaries, um, of his sense of his own behavior was just completely what others might consider disproportionate to the moment and to the distress. There was a lot of crying and yelling and a lot of eye rolling from my family. And I, yeah, took Charlie out and we had to speak about it, and he drew a picture of Sonic, and then that pulled him through. But I guess that comes down to perspective about what is disproportionate. And I think the point that I see is that it’s only disproportionate to those that aren’t within the extreme state. So having a disproportionate response to an extreme state, to me, is very much a, a witnessed statement rather than a lived experience, if that makes sense.

LUCY    Absolutely. Because when you’re in it, it just feels so

JAMIE    Proportionate.

LUCY    Proportionate and appropriate. Yeah. Especially when you’re that age as well,

RACHEL    When you’re that age. Yeah. Although I can think of a few disproportionate reactions I’ve had, and I look back and they were disproportionate. Yeah,

JAMIE    Yeah. In hindsight. Yeah, absolutely.

RACHEL    Jamie, you’ve already started talking a bit about this, but what does being in an extreme state mean to you?

JAMIE    Uh, yeah, it’s a, a really big question. I think firstly, the term extreme state is quite a broad phrasing, and I think it’s a really useful umbrella phrasing because it can encapsulate any individual’s experience. So I guess my understanding of an extreme state is one in which you lose a sense of autonomy and choice the agency or control, whether that be you lose control of how reality feels that you become unfamiliar to yourself. But it could also be on the other end of the spectrum where you find yourself in an extreme state of bliss or, um, happiness. Perhaps. A good example could be when someone’s under the influence of, of drugs and or they’re experiencing an episode of mania where their mood is so elevated and their energy becomes out, out of their control. Extreme states don’t have to necessarily mean a distressed state or a happy state. It’s a state of unfamiliarity. That’s the way I sort of look at it, that you feel unfamiliar with yourself in the moment.

LUCY    I feel like extreme state might have some negative connotations or people kind of like, it might be some fear around that, but just as you violated, people can have the opposite experience where it’s just pure bliss or you just feel maybe so outside of yourself, but in a really like, liberating way.

JAMIE    It’s, yeah, it can be such a freeing experience. And, you know, coming from both a lived experience and a mental health professional perspective, sometimes, sometimes an extreme depressive state can be the most familiar and comfortable thing in the world, even though you don’t necessarily have the agency to pull yourself out unsupported, sometimes it’s not always completely unwanted. And same with, uh, if someone’s in an elevated or manic state, a lot of people we hear say, you know, I, I don’t want to lose this high. It feels wonderful, but the consequential sort of behavior that can occur in those extreme states can be challenging for other people around them and risky for themselves as well. And I think that not all extreme states involve risk, but they certainly can. And that’s part of what makes it fascinating as a clinician to talk about this stuff. And also from a lived experience perspective of experiencing extreme states. And I think as, as Rachel was saying, we’ve all been there to some degree or another, so to explore this sort of content, it’s just well overdue and it’s lovely to talk about. Mm-hmm. It really is.

LUCY    Have you ever like, found yourself in a extreme state? Is there a particular point of your life or being with someone else in their life that comes to mind when we’re talking about these? 

JAMIE       Yeah, there’s lots of examples that I could offer. I guess from, from a professional perspective, I think we find ourselves in what could potentially become extreme states. And certainly earlier on in, in my career, I found myself in extreme states of panic and anxiety in the space of not knowing how to respond to someone who themselves is in an extreme state of distress or, um, or an extreme state of, you know, elevated happiness and mood and, and even mania. The more I was able to spend time with people in extreme states, the more I realized what a naturally human experience it needs to be viewed as in, in order to be helpful in that space. So as a clinician, I think we spend time around people and we find ourselves wanting to find the on and off switch at times to just help to change, to fix.  That can be a risky place to be because that’s potentially where burnout can live for clinicians. But there’s also been times where, you know, unfortunately, and not, this is not just mental health, but in the helping professions in general, you find yourself working with people who are feeling threatened and therefore do become aggressive. And that puts us in an extreme state of, of hyper vigilance sometimes. And learning how to live and be thorough and humanistic and ethical and supportive while holding yourself in that extreme state is something that I think really comes with time or time plus lived experience. So I think from, from that clinical perspective to, uh, some personal experiences, I’ve had a history, um, long ago where I was deep in addiction with drugs and alcohol and knew that there was going to be a breaking point for me. And I was lost in an extreme state of panic and remorse and guilt and unhappiness. 

The only thing I could do to take myself out of that extreme state, I knew that I had to get help, but I didn’t know how to. So in my extreme state of not really being in control, of making what some would say good choices or smart choices, I called up my boss without putting much thought into it and said, I’m an addict and I’ve gotta go to rehab. Because if I didn’t make a choice that was unstoppable, then I would never stop. So I had to put something in my way, something radical, in order for me to demand change of myself, put it out of my control, I’d already lost control in that state. I guess it was almost handing over control to someone else out of desperation. And that set forth a chain of events that pulled me out of that extreme state of, of not living, of just trying to be around, but not really enjoy my existence. 

And I was lucky enough that the boss that I called up and spoke to was turned out to be a recovering addict himself, and sent my six-month renewal contract to the rehab center, which was one of the purest forms of empathy I’ve ever experienced in my life. And one of the most inspiring things as well, because for someone of in such authority to show such grace and, and empathy helped me realize that my experience that I’d put myself in through different circumstances wasn’t unique. And it wasn’t to be demonised, it was to be worked with, and it was something that I could return from. Being in the, in the thick of an addictive life, I would say is one of the most intense extreme states I’ve ever lived in, because it went for a long time. I went from about six to eight months of never being who I was and not wanting to be that person either. 

LUCY    Do you think he would’ve ever asked for help if you hadn’t have hit rock bottom?

JAMIE    Uh, no. No, I don’t. I, I think I couldn’t ask for help. So I tried to hit the self-destruct button because I think at the core of my mind, calling my boss up to say that was going to wreck my life. And I was just so lucky that it didn’t, and it steered me to a course of recovery. But since then, when I’ve found myself struggling with my own emotional, spiritual mental health, I’m much more confident now to say, I do need some help here.

LUCY    Does that give you some faith when you work with young people that you may have seen hit rock bottom, that sometimes it can be a bit of a transformational place for people?

JAMIE    Oh yeah. Yeah. I mean, it, it, it’s never nice to see someone hit rock bottom, but having the, the privilege to be the person at the bottom of the well waiting, there’s something that’s what, you know, keeps me going in, in the kind of work that we do, is wanting to be that person that has non-judgmental arms that will catch someone hopefully, or at least lift them up. And I find that some of the most inspirational conversations that I have with young people and hear the most inspiring responses and input from them is when they’re at rock bottom, because there’s nothing left to lose, but the truth, you know, it’s all they’ve got left.

RACHEL     I was gonna ask, Jamie, you’ve sort of answered it, but how do you think that experience translates into how you are as a clinician?

JAMIE    There’s not much that walks through the front door of, of a health service or a mental health service that I can’t relate to in some form. I can’t pretend that I know what people are going through, but I’ve walked my own miles and I take the memory of, of the struggle of, of those miles that I’ve walked with me wherever I go, not as a weight on my shoulder, but as a reminder that hard times, as naff as it sounds, is like sands through the hourglass. They do pass if, if you can sit with them and understand and recognize them for what they are, which are moments and experiences that don’t define an individual for who they are, but rather it’s defining of the moment that a person’s experiencing. Simply never defining someone by their current behavior or situation is probably one of the most helpful things that I’ve ever experienced. And that’s what I try to hold in my own practice, is if someone is in an extreme state, well that’s probably a symptom or an effect of unfortunate circumstances. It’s rarely a choice that they’re making to act out in a way that is uneasy or offensive for others.

GUITAR MUSIC

RACHEL    So Jamie, I’m just trying to think a bit more about what happens when someone’s in, in a heightened state of distress or an extreme state of distress. Mm-hmm. , you know, what do you think happens for those around the person or those that are called to help?

JAMIE    Yeah. I, I think a, a sense of professional purpose and maybe a little bit of a heightened sense of urgency to be responsive and to do the things that we’re trained to do. Sometimes there can be perhaps more of an application of theory rather than applying their knowledge to the moment in front of them. Mm-hmm. , I, I think sometimes professionals, um, in general, and, you know, this is without judgment at all, but can see distress as a black and white state. Mm-hmm. , and, and if it’s in this extreme distressed state, respond according to the book and apply the theory and the knowledge, the low and slow and the de-escalation. And sometimes de-escalation is not always the best first thing to do. Mm-hmm. , if someone has an experience that needs time to expel itself, to exhaust itself, or, or to simply have that distress expressed in a way that they feel they need to in the moment then jumping in with de-escalation and, you know, tell me how you feel and all that sort of good stuff that has its place. I think sometimes rushing to that approach can be perhaps sometimes missing the human element of, of what’s happening in front of you with someone in distress. You know, sometimes we need to sort of try to read the room more and, and listen to what’s going on and have a look around at what’s happening and perhaps what’s not happening as well. Mm-hmm. , you know, um, I think sometimes we can under think how we treat distress by going to our toolkit. Mm-hmm. , maybe it’s not time to bring out the toolkit, so

RACHEL    Mm-hmm. , what would we do instead?

JAMIE    Have a bit of a self-scan to think, okay, I have a responsibility in this moment. How am I doing in this moment before I try to put myself into someone else’s situation, checking myself? Am I the right person at this moment to be getting involved in lessening someone’s distress if I myself are not in a state to deal with that? And that happens when you wake up before you go to work. Ideally, it should happen on the reg with your colleagues as well, to be checking in and saying, well, today you are on, on blue dot or Code gray, or whatever the emergency response role is called in your service to say, today’s probably not a good day for me to be holding it ’cause I got a shit sleep. Or I’m, I’m just, I’m feeling a little bit outside of my own skin today.

So, you know, let’s not put me in that situation. I, I think if you find yourself in that situation, hopefully you’ve been trained really well enough to manage your own triggers as well, because they can be quite triggering moments. So I think that comes down to having a real sort of awareness of, of what you bring to a situation like that and what training do you require to be able to separate your own noise from what’s happening in front of you. And I think there’s a real skill that can be glossed over in, in the professional world that it’s okay, do some management of clinical aggression training or, you know, understand how to hit the duress button and make yourself safe. They’re good safety measures and necessary, but how do you be a human first and a professional when it’s required? To me, that’s the order that, um, for my own professional way of working, that to me, that’s what needs to happen, is I need to be in the room as a human being with professional skills. 

But if my skills walk in before I do as a person, I’ve probably lost that person. When someone comes in in distress and they get someone who’s feeling overtired over-caffeinated stressed, that they’re bringing their own anxieties into the room, is that the best we can do for that young person who’s in distress? Probably not. And I think it’s our duty as a sector to make sure that the people we’re putting in those positions are the most respectful that we have to offer. Once again, as a profession, supporting honesty and humility and the bravery it takes to tap out sometimes is so important. 

RACHEL    Gosh, I really like the idea of bringing the human self before the skills into our response, but I’m kind of interested, Jamie. ’cause that requires a lot of clinicians, doesn’t it? Um, and you’re sort of talking about having a self-awareness of the response that we’re giving. Mm-hmm. What do workplaces like mental health services or teams need to do for each other to help us be able to operate like that?

JAMIE    I mean, there needs to be a round table of like-minded individuals in a team to create a culture that’s supportive and welcoming and understanding of the fact that we’re all fragile. You know, we’re all not promised tomorrow, so how can we just be there for each other and not, I mean, it sounds like a, it does sound like a freaking t-shirt, but, you know, I’d, I’d wear it . It’s, you know, it’s gotta be there.

RACHEL   It’s, you know, I had this, I had this thought of, you know, that saying we’re only human. Mm-hmm. , I’ve never liked that before. ’cause I thought it was sort of not capturing what I think it should, but it suddenly makes sense to me. We’re only human, but it’s, it’s actually very important to be only human. 

JAMIE    Yeah. I mean, we, none of us are permanent, that’s for sure. Yeah. So yeah, I think acknowledging that and really encouraging that, um, that vulnerability is one of the strongest things we can do. You know, that’s what we ask the young people we work with to do, isn’t it Just, if you can be vulnerable with me and give me your whole truth mm-hmm. , that’s gonna give us the best place to start from. And if as workers, if we’re not doing that, then you know, have a day off , stay at home and look after yourself.

GUITAR MUSIC

RACHEL    How would you like to see the way in which we sit with distress change in the future?

JAMIE    Look, I, for me, there’s something that needs to happen from kindergarten, from primary school, and I think it’s happening more, is recognising that mental ill health doesn’t discriminate regardless of who, where, or how you are in the world. And raising kids all the way up into adulthood through youth. All of the good stuff to be just as free to talk about an ingrown toenail as they are about anxiety or depression. It should be as common as biology and reproduction and maths because they’re all things that just exist. Because they exist. It shouldn’t be a niche sector. Um, and I think we’re coming out of that gradually, but I think that if we can approach people who are in extreme states, whether that be distress or otherwise, if it’s done with a lens of compassion that’s genuine, that you want to be there for people, it’s pretty hard to go wrong. I, I think that if we can be aware enough of who we are in the room and try to have a greater awareness of who we’re trying to help, rather than what their symptoms or behavior are saying, that will put everyone in a better position to manage that extreme state in a more respectful way. So, you know, peace, love, compassion and mung beans, .

LUCY    It always comes back to the simple advice. It does. All we need is love. 

JAMIE    That’s right.

RACHEL    Jamie. Um, I’m interested, you know, we’ve talked a lot about what it’s like to be with someone who’s in a distress state or an extreme state. Have you seen it done well?

JAMIE    Yeah. I, I think that I’ve been lucky enough to be a part of one version of managing distress that worked really well. I was working at a music festival when I was working for a mental health service and we were running a booth. There was a young person who came to the booth in an extreme state of panic. And the extreme states in this example, sort of multilayered this young man came in and he was white as a ghost and didn’t know what to do. And he wasn’t substance affected or anything like that. He was just having a real dissociative, disorienting experience. And it was completely extreme for him. And the people around him, his friends totally loving and respectful and beautiful. People didn’t know what to do to help him. And of course, in the booth there was many clinicians who each wanted to help.

And there was some sort of experiences of how do we do the best thing that we can? And there was an immediacy to some of the clinician’s responses, including, and the friend’s responses. And I myself live with anxiety and have done since I was a child. And when I looked at this guy, it took me back to a lot of the times in my youth and childhood and even young adulthood when I’d experienced those. I’m not inside my own mind. I’ve lost control of my functional capacity. And I remember the things that used to help me through that, which was basically someone being there. So, I politely got my way through the crowd of people that were trying to offer this guy support and just said, if, you know, if everyone could please just give us some space. And I introduced myself to him and he was scared, you know, of, of his own state of mind, and therefore anyone around him wasn’t making sense. 

And I said, can we just sit down on the floor together? He was, um, he was like, oh, okay. Is that what I should do? And I was like, well, it’s something we can do and I’d like to, so let’s just do that. And then I just looked at him and said, I’m not gonna talk to you about this. I’m just gonna hold your hand if that’s okay with you. I’m gonna put my hand out and if you’re comfortable to embrace my hand with yours, let’s just do that and be here in this moment together. So we did that and a couple of the clinicians gave me sideways glances as if, oh, what, what are you doing there? And some of the friends looked at me and kind of gave me this comforting nod, like, oh shit, of course. And over the course of about five or 10 minutes sitting literally just holding this guy’s hands in silence, he eventually came back to himself out of this extreme state of confusion and panic and, you know, we had a little man moment and he, he had a bit of a tear up and so did I, because it was just this beautiful human experience that didn’t require clinical intervention as much as an empathetic human response. 

About half an hour later, he came back to the stall and he gave me a big high five. And he said, yeah, I’m back baby . And it was really great just to see that he felt so lost in this extreme state of not knowing, to just have a quiet moment holding hands with someone. It was a beautiful experience of watching someone go from an extreme state to an extremely happy state where he felt back in control of his own decisions and his own surroundings. 

LUCY    That’s epic . I think that’s a good, um, way to wrap up. Thank you so much for being our Guinea pig. You’ve been so generous in your sharing and just wanna thank you. It’s been an incredible conversation. So thank you, Jamie.

JAMIE    No, thank thanks to both you. It’s been an absolute privilege and yeah, I think what you’re doing is really cool. So thank you for letting me be a part of it.

LUCY    Thanks, Jamie. You well, I think that was a great way to kick off the first episode of the podcast. Mm-hmm. , Jamie is such a legend.

RACHEL    Total legend.

LUCY    His voice is just so smooth, isn’t it? Yeah. It’s like a radio presenter, .

RACHEL    It’s calming.

LUCY    He’s made for this. I’ve listened to this episode so many times. I never get sick of the story that he tells at the end about holding the young person’s hand and just that simple, simple gesture.

RACHEL    Mm-hmm.  Beautiful.

LUCY    It’s beautiful.

RACHEL    Yeah. You know what I really love about this episode is that Jamie’s really able to help us think about professionals as human. Mm-hmm. , you know, sometimes extremely human actually. Um, but you know, there’s lots of reluctance over a long time for professionals to bring their real selves to their work and bring their humanity and, you know, speak and acknowledge their own lived experience of distress. And Jamie does that so well and in such an inspiring way. And there needs to be more of it, I say.

LUCY    Yeah, I totally agree.

MUSIC

Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria, or moments that feel completely unreal.

On Extremely Human, we hear from people who’ve been there and share what they’ve learned along the way.

Together, we ask: how can we meet the full range of human experience with kindness and compassion?

Come and listen with:
Lucy (She/Her) – A big fan of pickleball, ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – Introducing Extremely Human

RACHEL    discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters, and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders past and present. They have never seeded sovereignty.

LUCY    In this podcast, we share stories that help us learn from each other, connect us, and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people. 

RACHEL    discovery college acknowledges. The views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

MUSIC

LUCY    I am Lucy and I’m a co-host on the Extremely Human podcast. I work at discovery college and I’ve definitely tipped my toes in some extreme states myself. I feel like it’s fitting that I’m on a podcast called Extremely Human ’cause. My best friend actually used to call me the Extreme Artist and used to make comic strips of me doing extreme activities like chasing after Rubbish that had blown away in a storm. A little bit about me is that I love story sharing, ice cream and my inner Nana loves sleeping.

RACHEL    And I’m Rachel, also a co-host on the Extremely Human Podcast. I’m a mental health social worker at Alfred Health. I chose social work as a profession because of my values of social justice and human rights. I believe in the importance of social connection and relationships. I’m also an open dialogue practitioner. This helps me to bring my values, beliefs, and all of myself to my work in mental health. I’m a mad footy fan and some of my best friends have fur and four legs.

LUCY    For those wondering what discovery college is. discovery college is a learning space that creates and runs courses with and for the community on mental health and wellbeing from these spaces. The seed for a podcast grew. So Rach and I ended up deciding to make a podcast, which is the extremely human podcast. And it’s basically just a conversation talking to different people about their experiences of being in an extreme state. And I think when we first came up with the idea, you sort of spoke about the extreme states and it wasn’t a term I’d ever heard before. Can you please sort of explain what an extreme state is?

RACHEL    Yeah, I’ll do my best. Uh, you know, I think it was for me, I really like the term extreme states. I don’t know where I first heard it or how I first came to start using it, but it really helped me because I was a bit troubled by the labelling of human experiences as symptoms of illness. And you know what? I meet people every day who have different ways of expressing distress or psychological distress or emotional distress. And they’re often met by services and society in a way that’s labelling and pathologizing of those experiences. When I first heard the word extreme states or the term extreme states, it felt like it really freed things up. And, you know, for things that we would usually refer to as psychosis or bipolar or depression or eating disorders or anxiety, you know, it, it really helped me to think about those things a bit differently.

LUCY    Yeah, I really love the way that you’ve phrased that ’cause it just, it makes it more of a human experience rather than trying to put it in a box and a label. I think it’s just such a nice way of looking at things. I’m so glad that we finally got the opportunity to actually make this podcast. Finally, because I’ve, over the years I’ve spoken to so many people who have been in their own extreme states, all different kinds, like psychosis, grief, addiction, and they’ve told me stories about being in that state and they haven’t always received the best care and haven’t been able to speak about those experiences. So I’m glad that we’ve had people on this podcast that gives them a voice to share their stories about what they’ve been through and what they find helpful in those moments.

RACHEL    Yeah. Voices that are really, um, I think silenced. Yeah. And not easy to hear. Mm-hmm. sometimes and or not easy to say what they think or what they need. So I’m, I’m really glad we’ve been able to hear those voices too. You know, Luce, I’m, I’m sure you feel the same way. I am not, but I don’t wanna speak for you. But these conversations have really changed me. Definitely. Definitely. You know, I feel like I’ve been really impacted and in a really positive way and it’s really made me reflect on lots of things. It feels like so generous. The people that have talked with us have been so generous in, in how they’ve, what they’ve shared and what we’ve talked about together. I really hope people feel, who listen, feel that this is impactful for them too.

LUCY    Absolutely. I just wanted to touch on the question that we ask each guest at the start of every episode. We wanted to start each episode by asking our guests if they’ve ever had a disproportionate reaction to something. So by disproportionate reaction, we just mean a reaction to an event, which was maybe a little bit over the top. Maybe they might give an example of something that was a little bit funny, but if the examples aren’t always funny. Yeah. Sometimes they’re a little bit more on the serious side. And we asked this to people because some of us may not relate to being in an extreme state, but we can all have moments of feeling extreme emotions. 

RACHEL    Yeah. It’s just part of being human. Yeah. Yeah. Exactly. And so this question sort of helps us start to think about, you know, sometimes we can all be a bit over the top and sometimes we have extreme reactions. Um, totally. And so, you know, I think it’s a really nice way to start the episodes and a little bit of fun sometimes.

LUCY    I think so too. I feel like I might be the Guinea pig and put forth my example of being in a disproportionate reaction.

RACHEL   Oh, I’d love to hear it.

LUCY    A while ago I thought it would be a good idea to purchase a cardboard desk. A cardboard desk. A cardboard desk, which I thought would be really easy to assemble ’cause it’s made of cardboard. I thought it was gonna be like origami. And it came with these instructions, which I could barely see. And the pitches made no sense. And I think after like two hours of trying to construct the cardboard desk, I’ve had like full, full meltdown mode. And I was like on the brink of tears and I was so distressed by it that I was going to put in leave and have the day off work. And I’d never even had a sick day or taken any time off work at this point. And I wasn’t gonna do that just ’cause I was full meltdown mode and cracked it and basically gave it some time. And when I came back, put the desk together and it actually worked and it was no big deal, but it was maybe top two stressful things of that year. .

RACHEL    It does sound stressful. I’ve gotta be honest, I’ve never heard of a cardboard desk. 

LUCY    Yeah, you don’t wanna know about ’em. Okay.

RACHEL   

LUCY    Not worth knowing about. Do you have, have you been in an extreme state or an extreme moment, Rach?

RACHEL    Uh, yeah, I’ve been in a lot of extreme mo reactions to things I think. Um, but I guess the one I wanted to share, it’s a bit different to yours but, um, you know, and, and a number of years ago, I actually, my husband and I, we were, we were going through some fertility treatment and, you know, so this is a pretty tough time for us. And, you know, going through, um, getting help for our fertility was a really difficult time. Mm-hmm. and I used to get these calls from the clinic that we were seeing and you know, there were always different people calling me, you know, and they, it was never the same person. And they would call and they would ask to speak to me to either make it, you know, talk about some results or plan some things that we were gonna be doing next.  And I’d answer the phone and they’d ask to speak to me and I’d say it was me. And then before anything else happened, they’d ask, what’s your name, date of birth and address. Yeah. And every time they asked me that, I’m not kidding, I would lose it. I was like, you called me. Why? How do you not know who I’m, and you know, it was actually quite embarrassing now to think back and I think they must have be be so worried about calling me whenever they called me . I think it was just so depersonalised

LUCY    For sure.

RACHEL    And just so dehumanising. Definitely. Definitely. And you know, going through something so difficult and sensitive like that, you know, you wanna kind of know that people know who you are, ,

LUCY    You know, and yeah, I think to be honest, it’s not actually over the top at all.  I think that’s exactly the, the appropriate response for a situation like that.

RACHEL    I dunno if they felt  that way.

LUCY   I think they would

RACHEL    . Yeah. Thanks Luce. That’s very kind of you. But it does, you know, it it, I wasn’t in my best self, you know, so I was reactive and stressed and really,

LUCY   I’m sure they get it a lot though

RACHEL    You know? Well, yeah, maybe, maybe. But I’m kind of on the other side now that I’m not in that I kind of think about, you know, they have to do that, that, you know, there are the laws and the rules are around protecting rights and privacy and you have to double check people’s identity. So the rational me really knows why it happens. Yeah. Um, but the, you know, the sensitive and just, and stressed me felt like I was just this number on a page and Yeah. That no one really cared.

LUCY    Yeah. Yeah. I think it’s very understandable.

RACHEL    Thank you . 

RACHEL    There’s a couple of things that I often, um, say to myself and say to other people that I meet who are having a hard time, you know, and that’s be brave and be kind. And I I really wanted to maybe finish this conversation today by thinking about those things. ’cause I think there’s a lot of people who’ve been brave by talking with us and maybe being brave by listening to the episodes. And I really hope our, our listeners can be kind and be kind to themselves and to each other.

LUCY    I love that. That’s a great sentiment.

MUSIC

LUCY     Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.