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.
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.
