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Psychosis (young people)

Future plans and recovery for young people experiencing psychosis

Future plans

While a few people we spoke to had no particular plans for the future, most had ideas about what they would like to do next. Some were looking to move to a new area to support their recovery or find work. Others were studying or had plans to study or do an apprenticeship.
 

Joe wants to do a Masters degree in theatre and says the only thing holding him back is the cost of funding the course. Although his experiences of psychosis will “always be there” he isn’t going to let it deter him.

Joe wants to do a Masters degree in theatre and says the only thing holding him back is the cost of funding the course. Although his experiences of psychosis will “always be there” he isn’t going to let it deter him.

Age at interview: 23
Sex: Male
Age at diagnosis: 21
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So, in terms of kind of looking to the future. I mean, you mentioned this Masters in theatre?

Yeah. Well, Masters or any theatre school that will take me at all [laugh].

Yeah. So you're feeling sort of confident about that, and about managing -

I think, I think I'm good enough and I think I'm sane enough. I just don't know if I'm rich enough. Genuinely. I think the cheapest one I've found is like thirty one grand.

Right. Not per year, hopefully?

No, just total for a two year thing. But I'm - I do not have that many pennies. And I do not have a big fraction of that many pennies. So I need to find a job that pays more.

Yeah. But you don't - It sounds like you don't see the experiences that you've had as kind of holding you back in any way?

I think they're a part of me. They're always going to be there, and I'm always going to have the memories of them, and I'm always going to have the active effects of them at any one time. But Anthony Hopkins was schizophrenic. You know, Hannibal Lecter. He's a good actor.
A few people, who were working before their first experience of psychosis, returned once they felt well enough. But some didn’t feel they could go back to work, or didn’t want to, and decided on a career change. Luke had been working in a global professional services company but wasn’t sure whether people like him with experience of bipolar disorder and schizophrenia could work in that environment. He had always been interested in philosophy and so applied to study philosophy and religion at university.
 

Joseph could have returned to his work as a chef but is glad that he didn’t. He took time to re-evaluate what he wanted and has taken on some gardening work for a while, which is “quite therapeutic”.

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Joseph could have returned to his work as a chef but is glad that he didn’t. He took time to re-evaluate what he wanted and has taken on some gardening work for a while, which is “quite therapeutic”.

Age at interview: 22
Sex: Male
Age at diagnosis: 21
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I could have gone back into the kitchen, or just - as the doctors say, 'be kind to yourself'. And I just thought well, I didn't go through all of that just to go back to what I was doing, and if there's anything good I can take from it, it'd be just to re-evaluate what I want to be doing.

Or if I were to go back into the kitchen now, I'd kind of do it differently. So, it certainly gave me that time to do that. I was receiving statutory sick pay, which obviously helped to give me that time, to re-evaluate. And my employer was very good, saying "If you want to come back at Christmas, or in the New Year -." Which was several months after. We can think of something, work something out. And it - New Year came round, and I met up with them. Still on medication at that point, so - you know - sort of kept it rolling, in a way. I kept on giving the doctors note. But, so I just wasn't ready, basically. And I think that's something I feel a lot of people just want to rush back into - rush straight back into what I was doing before, like normal life, the job - you know, living on your own. But, and it was hard. But I'm happy that I just sort of held out. And, yeah. Even then, I - I went to a couple of sort of college and university open days. Which is good, but I still wasn't ready. But just preparing, dipping my feet in the water to sort of - but doing it gradually.

And something I'd say probably to most people, but specifically to chefs, is that if you've either burned out, or want to - just a change from the kitchen - gardening was absolutely amazing for me. Because it's similar enough to cooking, in the sense it's very hands-on. It's - Some of it is working with food still, and growing food. It's, yeah. But then it's a very - quite therapeutic. And whereas in the kitchen you've got to get so many plates out in a certain amount of time, with the gardening - so you're sort of re-landscaping someone's house, or just - yeah, doing the general maintenance, things can take months to grow. And it's - you've got that time. And another thing I'd say is that I don't lose sleep over cutting a tree slightly wrong, or - just when I go to bed, I don't think about that. Whereas in the kitchen there's a serious chance you could poison someone if you haven't dealt with it correctly, or a bad review. I'm not saying 'oh, you should do gardening instead of cheffing'. I think it's a great career still, but certainly if you - if you do burn out due to it, then something like gardening is similar enough. And for me, it's just a temporary thing. So it's been great, yeah.
Some people we spoke to found it hard to think about the future positively. Even when people were managing their psychotic experiences better, it could be hard to recognise this. Dominic said in the early stages of experiencing psychosis it can be hard to recognise your achievements. His voices criticised him constantly and he said “they had so much power over me at the time that it was just impossible to feel good about these things”. 

Also, thinking about the future often meant people had to come to terms with a life altering experience. Experiencing psychosis affected many things like relationships, friendships, working life, finances, studies and career prospects, and especially self-esteem and motivation.
 

Although Lucy thinks it is possible to “get on with life” with psychosis, she worries about people noticing her self-harm scars and feels less motivated to do things

Although Lucy thinks it is possible to “get on with life” with psychosis, she worries about people noticing her self-harm scars and feels less motivated to do things

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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Do you see a time in the future where things will change?

When I have better days, I kind of do. I think - I don't think it will go away completely. But I think - I think it's possible to kind of get on with life to a certain extent, and still have symptoms. But I, I do find it really difficult to, to imagine that things are going to turn out okay. It's just little things, like whatever happens there's always going to be scars on my arms. All over, actually. So it's quite difficult. I'm always thinking 'oh, if I went for a job interview - okay, so maybe I'd wear long sleeves to the job interview and then at what stage are they going to see my arms and realise that's happened'. And it's quite - thinking of life, always having to cover up. And always having like a gap - a year of my life that I wouldn't quite be able to explain to anyone, on my CV. And there's little things like that, that make it quite hard to look ahead. 

And thinking back to say two years ago, what's changed about you, as a person? And what's stayed the same?

Think I'm a lot less passionate about things now. So like two years ago I was really like eager for stuff in the church, and I was involved in everything, and I was running these aid trips to France, to help refugees out there. And going out giving stuff to homeless people every other week, to - sort of constantly organising running things. Really busy. And now, that's - it's not even - It's not so much tiredness, it's just not really caring enough to do anything about anything, really. It's just, yeah. Just a complete lack of motivation for getting on with stuff. I think I feel a lot less intelligent now than I used to. I was always like - I was always the smart one in my family, I was always the smart one in my friends, and that was quite a big thing I identified with, was being smart. And I think I've lost a lot of that. And it could be permanent. So, that's quite a hard thing to come to terms with.
Recovery in the context of psychosis

Recovery from psychosis can mean different things to different people, and not everyone likes the term recovery, for example, people who feel it’s not possible to recover. For those who use the term, recovery can be about one particular experience of psychosis coming to an end. Or it can mean having fewer recurrences of psychosis. But for those who experience psychosis on a day to day basis, it can mean that psychosis has a less severe impact on daily life and on their sense of wellbeing. For example, Andrew X said: “What recovery is to me is living with my condition as content as I possibly can and doing things I enjoy. Recovery is a journey. It's not a destination for me, it's a lifelong journey that I'm always gonna be on.”
 

Recovery for Dominic can mean many different things and can be something simple like leaving the house. He says it’s very important to recognise and celebrate those achievements.

Recovery for Dominic can mean many different things and can be something simple like leaving the house. He says it’s very important to recognise and celebrate those achievements.

Age at interview: 24
Sex: Male
Age at diagnosis: 21
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No, absolutely, absolutely. But, what I would say to those people is if you think that there's not a recovery phase, at least of mental illness, then you haven't experienced it properly. 

Your experience of mental health hasn't been on the severe end of it. Because unless you've been, I've had weeks where I've not even left my bed. I've literally just lost time in bed, because they cripple me, sometimes. If you haven't experienced that, if you don't think I need to recover from that then I'm afraid you're wrong. Because if, if that was just a normal thing, then I would be doing it every day and it wouldn’t be a big deal. But when I'm, when I'm in those, when I was in that bed for two weeks, all I wanted to do was get a knife and put it through my throat. That's all I wanted to do. There was nothing more in my head. I have bounced back from that. You have to bounce back from that. In order to be able to go out and do the challenges that you face every day, with a smile on your face, you have to be able to recover. But recovery comes in many many many different shapes. Recovery can be as little as, you went to the shop on your own today. How, how big that is depends on you. Don't let anybody else, anybody else, not even your GP, not even your therapist tell you that your steps aren't big, because every single step you make is fucking massive. It is gigantic. 

It's as big as you let it be. And you've gotta let it be big, 'cause otherwise those sad, those sad, horrible things will just beat you down all day every single day. I know from experience. You have to let some light in or the darkness just consumes you. There's, there's no other way around it. If you don't, nobody else is gonna commend you for walking to the shop. No, your parents may say, well done for doing that. But nobody else can give you the power you can from going ‘yes, I went to the shop today. All on my own and I didn't just walk in and walk out; I actually did some shopping’. Take that, blow it up, feed off of it. Use that as your oxygen, 'cause it is the biggest thing you could ever have in your recovery process is those wins. Tiny, massive, whatever a win is a bloody win in this situation. And you cannot always have 'em. But when you do, get it and hold onto it, because they are what matters. You're not gonna get 'em a lot and when you do, hold onto 'em please, because there is nothing else you can do. 
Ultimately, what recovery means varies from one person to the next and can mean recovering from a single experience of psychosis, or if psychotic experiences are ongoing, having experiences that are less severe, or less frequent. The people we spoke to often thought of recovery as meaning that they were able to live with the psychosis and its aftermath and still be positive about the future. Others felt the word ‘recovery’ should mean no longer having usual thoughts or experiences and didn’t think this would ever happen.
 

Recovery from the experience of psychosis through treatment in hospital happens “pretty quickly” for Luke, although the post-psychotic depression lasts longer. His “game plan” is to reduce the regularity of the psychotic experiences.

Recovery from the experience of psychosis through treatment in hospital happens “pretty quickly” for Luke, although the post-psychotic depression lasts longer. His “game plan” is to reduce the regularity of the psychotic experiences.

Age at interview: 21
Sex: Male
Age at diagnosis: 19
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Because that's one thing you've got to remind yourself with psychosis - as catastrophic it can be, as bad as it can be, you go ill and I would say within - you know - a week and a half of being sectioned, under like intensive care, you do feel better. And that's what makes the management and treatment of psychosis quite interesting actually, because your real game plan is reducing the regularity of psychotic episodes. Because you know, it's not ideal, getting psychotic. Because not only will you be in hospital potentially for four weeks, or even longer, you're going to have the post-psychotic depression. You're not going to be able to go back to work suddenly. For me, both times it’s been a hell of a long time, from being sectioned. Which is pretty much while you're still in work. Or, or in study, whoever you are, whatever you do. You know, there is that - that length of time that it does take away. But you feel better from the psychotic symptoms pretty quick.
 

Although Ruby doesn’t think her emotions will ever be “standard”, she thinks her response to them will change. She has accepted that although her psychosis may or may not go away, her life is worth living.

Although Ruby doesn’t think her emotions will ever be “standard”, she thinks her response to them will change. She has accepted that although her psychosis may or may not go away, her life is worth living.

Age at interview: 22
Sex: Female
Age at diagnosis: 19
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Is recovery a word that you use?

I do use the word recovery. I mean, there’s, yeah, there's different things that I think apply to, to different parts of my recovery. I don't think my emotions will ever be kind of standard. I think they'll always change more quickly and that they'll always be a bit more intense. But my reaction to those emotions, I think can recover. I mean, I'm a lot better than I was. I'm, at one point I couldn't stay out of hospital for more than 12 hours. I've not been in hospital since October. So, in, in that respect things are moving forward. But also, from my understanding about most people that go to [the specialist personality disorder hospital], which is where I'm being referred to is that after they leave, they have a bit of support from services. But in the long term they don't need services. They are able to manage most of the time on their own. Yes, they sometimes have crisis's and need a bit of support, but generally they can manage. And, yeah, I think that's what I hope for my future that I can continue to learn to deal with what I experience. I mean, I've kind of accepted that it may or may not go away, but that either way my life is worth living. 
 

Peter has not sought help or counselling about his intrusive thoughts and can’t imagine not having them in the future.

Peter has not sought help or counselling about his intrusive thoughts and can’t imagine not having them in the future.

Age at interview: 24
Sex: Male
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I can’t really see a time when I won’t have thoughts going round in my head. Probably there might be something where people have said, "I’ve had therapy," or "I’ve had medication for it and it helps lessen them. And it helps do this." But I’m always, with it being a mental thing as well, I’m always a bit reluctant as to whether it is still something that needs to be treated, or whether it is still something which most people have got. I think - I can’t really see myself not having the thoughts, but I think maybe I’m hopeful of kind of trying to look for some sort of counselling. 

I haven’t really looked that much, yet. I know obviously about kind of local IAPT services, I know you can look online and try and find services through the NHS. And I know how difficult it is to get services for that. I’m not sure I would feel confident still going to the doctors and pursuing kind of therapy for it or anything, or medication. But maybe that’s something I should think about doing.
 

Lucy didn’t think that ‘distress tolerance’ sounded like a good idea. She wanted to feel better, not to “settle for this being okay”.

Lucy didn’t think that ‘distress tolerance’ sounded like a good idea. She wanted to feel better, not to “settle for this being okay”.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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So, sort of confidence, that kind of thing?

Yeah. Yeah.

And is there anyone there to sort of support you, to get that back? Has anyone talked about building confidence?

My support worker does a bit. But I think at the moment I'm just so constantly having crises that it's kind of just - I can't remember what that phrase is, where the - always just blowing out fires, rather than just dealing with -

Fire-fighting.

Yeah. But they - Yeah, I don't think there's been much work to try and deal with things on a long term thing, it's just getting me through like each week. 

And do people talk about recovery with you?

I felt like at the start they did, and they kind of talked about how people can get completely better. And now they kind of just talk about like distress tolerance, and I'm kind of like, "I don't want to tolerate this, I want to feel better." And they talk about, you know, learning skills to deal with it. And, yeah. In fact there's a, there's a little poster up in my local like kind of branch of the CMHT, where it says 'recovery is different things to everyone, and recovery isn't necessarily absence of symptoms, but just learning how to deal with them'. And to me, that's kind of a bit - I don't like that, because I think well these symptoms aren't really something that you should just learn to deal with. Like I don't want to kind of just settle for this being okay. Like I want to feel better. 
Different ways to recover

People who had experiences of psychosis over a number of years, and had found self-help tools that worked for them, often talked about their recovery as something they themselves were actively managing. Taking medication could assist with this - although for some medication was seen as unhelpful or as making things worse. 

Recovery wasn’t about going back to how things were before psychosis but about accepting what was happening. For some being able to reflect on what had happened helped them to see their experiences as having good and bad consequences. With time some felt more in control of how experiencing psychosis affected them day to day. Becky says that now the way her mental health affects her is not always negative, whereas before she would have said it was completely negative: “It may put me on hold sometimes, but it doesn't have to take over”. As people got older they were sometimes able to understand their psychosis differently. Luke explains that for him:

“The thing is with psychosis, you learn more about yourself every day. And I suppose that's actually one of the great things about it. You're young, you have that trepidation and the fear about what it is. But actually, you begin to understand more about your identity as you get older.”
 

Andrew X’s experiences of psychosis “destroyed” him, but also made him the person he is today. If there was a magic pill that meant all his experience of mental illness would disappear, he says he wouldn’t take it.

Andrew X’s experiences of psychosis “destroyed” him, but also made him the person he is today. If there was a magic pill that meant all his experience of mental illness would disappear, he says he wouldn’t take it.

Age at interview: 24
Sex: Male
Age at diagnosis: 14
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In the short term, I think in the short term and to the medium term it destroyed me as a person. It, it took away everything I thought it was and put it in a blender and just made me just this, you know, I didn't become this overnight. But, you know, it sort of the, the epitome of what was going on at the time. I was depressed. I was suicidal. I was hurting myself. I was hearing things. I was, you know, overweight. I felt I was ugly. That, that low point on my life where I felt all these really negative things. You know, I didn't wanna be here any more. 14 years old and you wanna kill yourself is not really the best of situations to be in. So in the short term it sort of like brought about that collapse, you know, in the entire shaky foundations that was my life at the time just collapsed and fell into a pit of darkness. But, actually it made me, as a person and it made me who I am today. And it made me see the world very differently. It gave me a very unique perspective on the world, because when you go through that trauma at that young age, you become really really mature. 

And you know you actually accept that everyone is on their own little journey. And everyone has their own demons to fight. And I don't want anyone to go through what I went through. So I just developed this sort of empathic way of being. I developed this real, what I think, you know, care for others as a result of it. And it also helped me understand just more about people, people spend their lives trying to get, trying to understand you know, about mental health and about you know, what those experiences mean and how we connect to them. I think my episode really helped me gain a really deep understanding of people and how people work. I think some people asked me, if I could, would I change anything about my experiences and I say, no, because they make me who I am. They are part of me. I mean, even if you had a magic pill and you said, Andrew, if you take this pill right, all your mental illness will go away. You will never become mentally ill again – I wouldn't take it. Why wouldn't I take it, because that's part of me. It's who I am. It, it's everything I've known and that doesn't mean I go around as some sort of you know, constantly ill, mentally ill person. It just means that I have a really strong identity of my mental health. You know, I'm very mentally healthy, because I have a mental health problem. And if I don't look after my mental health, the consequences are really severe for me. I become incredibly unwell. And I become the—it's life and death. I have to look after my mental health. I've got no choice. It's what I have to do. Just like if your physical health was in danger and you had a physical health condition, you'd look after your physical health. Mental health is no different. So I wouldn't take a pill, no. 
 

For Joseph, recovery is not about returning to how you were before the experience of psychosis, but about focusing on “whatever comes out of” those experiences.

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For Joseph, recovery is not about returning to how you were before the experience of psychosis, but about focusing on “whatever comes out of” those experiences.

Age at interview: 22
Sex: Male
Age at diagnosis: 21
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Yeah, it's an interesting one because when a lot of people were talking about recovery, especially in the early stages, they were talking about - It was almost said in a way that was like recovering back to how I was before? And, especially if you look at the definition for recovery, it's to re-cover where you were.

And there was a lot of things not right with how I was before. So just the being able to have routine and get up, and wash, and all these normal things. Obviously positive attributes to my character. Obviously I want to keep all those things, and restore what I'd lost. But I've done a huge amount of just recovery in the sense of, 'right I'm just going to forget about trying to get back to wherever I was, or - and just focus on what I'm doing now, and whatever comes out of that if I -'. Not to change my character or who I am, but naturally you will be slightly, be different, an- obviously for the better.
Many of the young people who spoke to us, said sharing experiences with others is an important part of finding out who they were, and of recovering. A few people said it was important for them to speak openly about their experiences. Overcoming negative feelings about their own mental health (such as shame or confusion) and learning from their own (and others’) experiences helped some people feel more positive about themselves and their future. Dominic said, “The reason why I'm such an honest person about it is because it made me who I am now.” Nikki felt that talking about it with people, made her think more positively about the future, and helped her see “that you can live with it”.

Many wanted to help others by sharing their experiences and what they had learned from them. A few had started working as peer supporters and saw this as a way to turn what had felt like a negative experience, into something more positive.
 

Posting a YouTube video where she talked about her experience of psychosis helped Sameeha’s recovery.

Posting a YouTube video where she talked about her experience of psychosis helped Sameeha’s recovery.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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See the video, the video I'm in, I would say was my recovery, because that January I would say was, it was just the whole shock of, I was a little bit sad that it happened. I was a little bit shocked. I felt a little bit guilty. I felt quite a lot of shame. But then, after that, because of the people and because of my own opinion of things was growing and because my whole, my own, my own inner strength of it came from it. So I, I grew to be quite a substantial person from this whole experience. So, there were, the recovery I would say was only at the most, a month. And from the rest of it, it was an experience, the whole thing was an experience for me. And there wasn't a bad one or was it, was it good, it was simply something I had to go through, because it happened, it is what it is. Do you know what I mean?

And in terms of sort of looking forward to the future now, plans for the future, do you think that that experience of psychosis has had an impact or what about your plan, what are your plans now?

Yeah, definitely, because I even like, like I said, I, I was, I was already not leaning towards law regarding my education. So when this happened, I was like, oh okay [laughs] like I, obviously I wanted to assist which is why I made the video. So it kind of, it, it, it turned my attention towards mental health, most definitely, it definitely this experience, it changed me, without a doubt. 
 

Things have started to improve for Nikki since she was accepted to study mental health nursing. She became involved with lots of extra curricular activities at college, which gave her a purpose.

Things have started to improve for Nikki since she was accepted to study mental health nursing. She became involved with lots of extra curricular activities at college, which gave her a purpose.

Age at interview: 19
Sex: Female
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I had a lot of time when I was just in and out of hospital and like I was trying to take my GCSE's at the same time and then it was just difficult. And then, but then I managed to get into college. It was a really good college. And I made a new friendship group and, you know, things started to improve. I started to get involved with like the extra curricular activities and that really helped me a lot. And it made me feel like I had some sort of purpose and then through that they went on to ask me, you know, ''Do you wanna speak at this event?'' And I said, ''Might as well, yeah. And then I did that and then that gave me a lot of confidence to use like to share my experiences in a way that could help people understand. And so that kind of sparked off like a series of different volunteering, campaigning and that was really good. And now I'm at university studying mental health nursing. And I still hear voices pretty much almost constantly. I'm able to live with them a lot more.
 

When people have learned a lot from their mental health experiences and feel a sense of recovery they might want to help others. Joseph wants to share his experiences to provide hope for others about the future.

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When people have learned a lot from their mental health experiences and feel a sense of recovery they might want to help others. Joseph wants to share his experiences to provide hope for others about the future.

Age at interview: 22
Sex: Male
Age at diagnosis: 21
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Well what I’m saying is a lot of people that have a mental condition, when you do get to a point where you feel you've learned a lot from it - and you feel a certain degree of recovery, you like to help others. So yeah, currently I'd like to do support work for other people with mental health conditions. That'd probably be my biggest asset. It's like I've written down a lot of the things that I've learned, so I feel I can help and use - Without being directive, and saying "Oh, this is what I did, this is what you should do." But just - if nothing else, just as some sort of symbol of hope. And it wasn't so much the episode that was the bad period, because there was some highlights. For me anyway it was afterwards, with the realising- and just this bleak kind of future that just - If you've got nothing lined up, then it can yeah, look really pretty grim. So provide hope. To be a peer supporter.
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