Psychosis (young people)

Support groups, charities and sharing experiences online

Spending time with, and sharing experiences with people who have also experienced psychosis can be life changing, and made a huge difference for some people we spoke to. Peer support could make people feel less alone and able to view their experiences as less unusual. Seeing what others had learnt and how they dealt with things, helped some to think about how they managed their own psychosis. This kind of support could be gained in different ways: attending support groups or charity run events, linking with or starting their own peer support networks, or posting videos, blogging and making contact with others online through social media.
People also talked about the benefits of volunteering as peer support workers to help others. Luke mentors a young man who, like him, has a diagnosis of bipolar disorder, and they have become like “mates”. Tariq befriends people at his local hospital and helps out at a respite centre. For Tariq, helping others means that he is able to turn his negative experiences into something positive, by passing on what he has learned to others.
But like Andrew Z (below), not everyone was able to find others to share their experiences with.

Support groups
 
Only a few people had been to a support group. Some were not aware of them or had not looked for one. Some people didn’t feel comfortable going to groups. Andrew X had been to a few but said he preferred one- to -one discussions. Support groups are sometimes offered through a charity or are organised as part of mental health services. People who had positive experiences of support groups, often mentioned how friendly the other people attending the group were, and that it helped if the setting felt relaxed and there was time to get to know people. Support groups can be structured around an activity such as gardening, or can be an opportunity to just be with others socially to compare and share experiences.
Sharing or reading about experiences of others online
 
Having psychosis can be a very isolating experience and social media can be a good way to connect with others with similar experiences. People we spoke to found ways to connect with others through private groups in Facebook, Twitter or Instagram, or had read about other people’s experiences on a charity website. Hannah read others’ stories on the Mind website.
Reading about shared experiences could transform the way people felt about themselves. When Sameeha found others online who had similar experiences to hers it helped her to feel less alone and that her experiences were not as ‘abnormal’ as she had thought. Even if their story was quite different, having people to talk to “who can relate to you” is important.
The internet could also offer a platform for young people to share their own story, which could help with recovery. Nikki won an award for a video she produced in which young people shared their experiences of psychosis.
Sometimes though, hearing others’ stories and views could be challenging and difficult. Becky felt it was better to avoid platforms like Twitter for information and go to professionally run sites with medical rather than personal perspectives: “I don’t think reading everybody else’s negative point of view is necessarily the best way forward”.
 
Using social media also had to be approached with care and could do more harm than good if the social media site was a place where friends and acquaintances, or total strangers, could comment on personal experiences and reflections. Nikki finds social media is a good way to connect with people, but there is a lot of bullying, because the kind of remarks people make are very shallow and thoughtless. She said that when you are already feeling vulnerable its important not to associate how many ”likes and followers” you have with your real self-worth.
Support from Charities
 
There are many charities specialising in mental health or hearing voices that provide support to young people. Most have websites that provide information about the work they do, and what help they can offer people. A few that our interviewees mentioned included:
  • Mind
  • Hearing voices Network
  • Time to Change 
  • Prince’s Trust
Charities offer different types of support, such as providing courses on wellbeing and managing anxieties, one to one support with managing finances and help to find housing. Fran attended a poetry group run by a local charity and now finds that writing poetry helps her to express her feelings. 
 
Some people attended courses regularly over a period of time and got to know staff well. Staff working at charities could become an important and valued source of support for young people. Nikki mentioned getting specialist counselling support through charities and felt they had more time available for her, and they seemed to be working out of a genuine sense of care.
Some courses run by charities are designed to help build people’s confidence. Dominic went on a week-long residential course with the Prince’s Trust for young people who had a variety of mental health experiences. Although he initially felt afraid of going and not being able to smoke his weed during the week, the other people there were very caring and they became like a family.
A few people had been on training courses with Time to Change (which specialises in ending stigma about mental health) to help them to speak out about their experiences.

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