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.
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.
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
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 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.
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. 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.
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.
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.
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”.
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.
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.
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.
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.
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.
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