Social life and relationships with psychosis
People we spoke to valued spending time with their peers. Meeting friends socially could be an enormous support. A few people were concerned about how...
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.
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.
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.
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.’
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.
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.’
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.
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