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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.
 

Nikki contacted a charity for young people who hear voices that was organised by a voice hearer. She said it was “the biggest stepping stone” for her and helped her learn to live with her voices.

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Age at interview: 19
Sex: Female
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There's a charity that I got in touch with that's kind of for young people that hear voices. And they were really great. It's run by a wonderful person that's had experience of hearing voices themselves. And it was through meeting them that like really really helped. Like they, they shared a lot of coping strategies with me, you know, they didn't judge me. They helped me to feel more okay about it. I wasn't judging myself any more. That was like the biggest stepping stone for me, but then, it was about, talking about it with people and people, you know, accepting it and not judging it. And meeting people, learning, you know, that you can live with it. You can learn to manage it. Doesn't have to stop everything. It was mainly that realisation for me that really helped. It was and using it as a good thing. And from that that was what's helped me to be able to then go on and achieve things like, doing volunteering with charities and campaigning like to politicians, celebrities, whatever about like mental health awareness challenging stigma and discrimination, because that's something I've experienced a lot of. So it's been good. 
 

Although she is “not the sort” to go to groups, Emily finds having friends with similar experiences is really helpful.

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Age at interview: 23
Sex: Female
Age at diagnosis: 21
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I am not really the sort of person to go to groups and talk about my experience. I mean, this is the first time I've ever actually talked about it to people other than my family and like psychiatrists. I think I'm starting to get to the point now where I would go and see what it was like and meet up with people with similar problems to me. 'Cos I think that's the most important thing is having friends that understand you. 'Cos it's all, my mum tries her hardest to understand. She's never gets angry with me if I'm ill or anything like that. But she can only understand to a certain degree, because she's never had it, whereas my friends that I met in hospital and people in support groups you sort of lean on each other and you think I'm sort of that's why I like peer support, because you help people, but you also learn yourself. I've never really been to a support group for myself. But I have done peer support with other people. 
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.
 

Andrew Z experienced false memories and hasn’t met anyone else with similar experiences to him, or who has had psychosis ‘full stop’.

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Age at interview: 23
Sex: Male
Age at diagnosis: 20
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Most people with psychosis are kind of the this wouldn't affect most people with psychosis, what I’m about to say. But it's kind of, because obviously mine has been quite different. It's kind of false memories, whereas most people are hearing voices and stuff and it's kind of a desire to wanna meet someone whose been through the same thing. 

Which obviously, for other people who have had psychosis obviously it's sort of like advised people who have the same thing, but I think they found it easier than, they found it quite difficult. But obviously not many people have got psychosis and you need to find a youth club, or something, or not youth, sorry, a club for people who've had the same symptoms. But, yeah, I often feel it's a bit frustrating. 'Cause, even before I had psychosis, I was quite frustrated trying to find someone with similar interests or similar, trying to find someone similar to yourself, in general was often quite difficult. But particularly since mine was quite A Typical, it's kind of you wanna meet someone whose had the same symptoms, but it's quite difficult to find someone. I, I haven't met anyone whose had psychosis anyway, full stop. So, yeah. I tried looking it up on the internet trying to read, trying to look through stuff and people on the internet who said they'd had the same symptoms and haven't been able to find anyone, so, yeah. 
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.
 

Sam describes two support groups she attended. One felt stressful because there were new people every week. The other was good because there were lots of people and they could choose whether they wanted to talk about their experiences.

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Age at interview: 18
Sex: Female
Age at diagnosis: 17
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She basically, she ran a group, started a group on a Wednesday evening up at the hospital. 

You've been to it?

And I went to it a few times and there was like it was nice 'cause there was like people there my age. A little bit younger, couple of years younger than me and a little bit older than me and I talked to a few people and but it and I did a survey about she wanted me to do afterwards and what they could improve and that. Yeah, and it was really nice 'cause we weren't sort of, it sort of mentioned about psychosis, but not all the time like we started like playing games and stuff and just sort of like we and everyone sort of, no-one was really like forced to talk about their own experiences or talk about it. It was like we played a game first and and then there was, she like they ordered pizza and it was just really nice. There was about nine I think of us.

Quite a big, yeah—

Seven to nine of us, which I was a bit worried about at first, but there was a couple of people that I knew from when I did rock climbing 

And yeah and there was a couple of people I knew from when I did rock climbing and stuff. But I stopped doing that, because that was another support thing that I was going to with people with support workers and that, general- not assigned to me, but general ones from the team and but then that sort of got too big and I stopped going last year. And so, it started off with just me and the others and support workers and the instructors. And then, then it got like another person which I was okay with. And after a couple of weeks, I got friendly, talking to him. Then another, then I went away for a couple of weeks and I another new person came back. And it was just, every time I was going it was about three or four new people and I couldn't deal with it at the time, 'cause I wasn't on any anxiety medication or anything that worked. So I couldn't deal with it and I'd just go home all the time. Which I sort of spoke to her on the last time I went before Christmas and sort of said, ''Look, I can't come back any more until maybe in the New Year some time, because it's just stressing me out too much and I've already got so much on my plate as it is. I don't need all that.'' And she was fine with it and that and I stopped going. But, that's the sort of support group and so I've not really found any others —
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.
 

Ruby talks about tapping into a “recovery community” through a private account on Instagram, and using Facebook groups, which she finds a really positive experience.

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Age at interview: 22
Sex: Female
Age at diagnosis: 19
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There is a big Instagram community you only have to search things like hash tag recovery or anything like that and people will come up. And on there you can have a private account you only let who you want to see, see. I mean, there are things to avoid on places like that. But if you're focusing on the recovery community there's a big community that are very helpful. Also groups on Facebook. I mean, I'm part of Mental Health Fighters, that's the name if you search that it comes up and that's really positive. And there's a, a positive like Pen Pal so people with mental health is another group and people just write each other letters, send them positive encouragements with quotes or whatever you wanna send there aren't like a, a list of addresses or anything on there. You put up a post and say, hi, I would love to send something positive or receive something positive. If you're interested just send me a message and people do. Yeah, those are the main two groups that I use. 
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.
 

Joe found someone online who had “spookily similar” experiences to him. She suggested things that helped her and he found they helped him too.

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Age at interview: 23
Sex: Male
Age at diagnosis: 21
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It was a girl who had basically had a series of really, really - almost spookily scary, spookily similar experiences to mine.

Yeah.

But I guess that's - One thing I have considered is, maybe eventually you could categorise all types of mental illness, because maybe some people's brains just - that particular chemical trips off that reaction in the same way. 

Okay.

Or you could at least classify these bits. But it was - What basically, just yeah. Found 

So, what's similar about it? The actual images, or when it happened, or?

Yeah. The hallucinations. The background. The specific experiences. Even the specific - it was like someone who'd had an abusive family member who became one of their voices, who was the worst voice. And then they had another voice that sounded like them. And then one voice that helped them. And it was like - ironically, a more paranoid man than me would think someone had written this about me [laugh].

Ah, wow. So, just totally - yeah.

Yeah.

And what did that mean to you, when you - I mean, you said it kind of had a big - you know, really had a [inaudible]

It was basically someone who's further along than I was. And had said, "This helped me." And I thought 'well, if all that's the same, I might as well give that a go'. And yeah, and it did work, so.
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.
 

Sameeha had posted a video on YouTube about her experience of psychosis because she felt she needed to “speak about it” and “move on”.

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Age at interview: 22
Sex: Female
Age at diagnosis: 21
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Tell me about the YouTube video, yeah.

Cool. Yeah, no, I'd just started making, it was just after the, the time it happened and I'd come back and I'd just finished telling everyone like the people who I trusted. And I'd got great, great feedback regarding that. And I felt comfortable again. But no, I just felt I felt like I didn't, there was still something I needed to do. I felt still like I, I needed to speak about it even just to the air in front of me and then put it up. And I knew like looking it up, I knew that not a lot of people spoke about it. So I was just like, I'm just gonna, I'm just gonna put on my camera [laughs] just rant about it. Just so if when I need to say that things like even if I felt bad like kind of like a confession for like if I felt bad for doing it like affecting people during that period, I'm just gonna say it. And then, just get it off and then just forget about it, kind of thing. Just move on. Because once you just get everything out, speak it all out, speak all your worries, you can just move on from things and like just not worry about it. You've addressed it. You've taken responsibility now I could just move on with my life, kind of thing. 
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.
 

Peter hasn’t spoken to anyone about his “intrusive thoughts” as he is wary of the stigma around psychosis. He uses social media, with care, to talk about his experiences to others within the mental health community.

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Age at interview: 24
Sex: Male
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One thing I'll do is be kind of careful with social media. A couple of my family members are on like things like Facebook whom I’m friends with, but I’m always like more sort of - a little bit more vocal about mental health and my own mental health.

When it was - I don’t know if I can mention this, but the organisation ran a day where you are encouraged to talk about things, and that was just last week.

Time To Change. Yeah that’s okay to say that.

Yeah, Time To Talk day, yeah.

Yeah, Time To Talk day.

Yeah. Yeah they ran a Time To Talk day, which was last week. And I was careful not to post too much on Facebook where members of my family are on. And I was more sort of - because they were encouraging people to talk about, and have conversations, I had posted more on a different social media. So I was on Twitter. 

Okay.

Posting where people from my family can’t see what I’ve posted, and where its people from the volunteering from Time To Change who can see it instead.

And how was that sort of, twittering about your experiences?

That felt okay, yeah. I didn’t put too much in there, but I was - It was kind of similar to doing the testimony training thing. Which is one of their training things, where you do like a 5-10 minute talk, intended for like schools or workplaces. Where you talk about - like give a timeline of how, of your mental health.

And that I always mentioned a lot more. I always felt better reading it out. I didn’t feel confident reading it out at the actual training session, but the woman - the person running it said, "If you want to, we can arrange a phone call and you can try and read it out to me over the phone." Which I did, and I felt better for doing that. And that was kind of similar to going on Twitter and writing about it. Neither of them kind of mentioned psychosis, because I wanted to focus on more the depression and the anxiety side of things.

Yeah.

But I think there is still that kind of thing inside of me, stigma inside of me what kind of says depression and anxiety are okay-ish to talk about to people.

Okay. Yeah.

But maybe when it comes to talking about thoughts and when it gets on to things like paranoia and psychosis, kind of - I’m a bit more reluctant to mention them even to people in the mental health community. Because it’s maybe - I see it as something a bit more - like I don’t know, maybe it's seen as something where you’re more of a risk or something.
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.
 

Ruby goes to a wellbeing group run by her local Mind centre. She talks about the benefit of having support workers there to chat to who have a different “perspective” to health service providers.

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Age at interview: 22
Sex: Female
Age at diagnosis: 19
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I also go to Mind, which really really helps. I mean the-, I go to a wellbeing group and it's called, and it's funded by the National Lottery and it's a 12 week course where they cover just general wellbeing topics and at the start you set a goal and then they work with you on that goal towards the end of the 12 weeks they kind of review how that's done. And, it's a rolling programme, so anyone can start at any point. But I've now been going for a year [laughs] so the 12 weeks was a nice idea, but we’ve- me and my, I met a friend there, we didn't know each other before. But we're good friends now. And, we go together. —

What sorts of things. Can you just sort of mention the sorts of things that that's helped with?

Well, it's helped with being around people who although their experiences aren't the same, they understand. They're also, it's run by support workers and for the last hour there's sort of a general chat amongst everyone getting to know each other, talking about whatever you want. But there's also the staff are there if you want a one to one chat. There've been lots of times where things have been difficult during the week. It's somebody outside of services that doesn't have the same perspective, but understands mental health that you can just let things out and talk about whatever and they never sort of go, oh my gosh, that's so strange or like can't believe you're experiencing that. Yeah, they just understand. Also, so some of the goals I've set have been one of them was to be out of hospital as much as possible. I had, during that time we worked to put things in place and I think I only went to A&E four times whereas at some points it's been like every other day. So, yeah, working on that was a big improvement 
 

A local charity has provided Dominic with support. He can ring his Mind worker and “just rant” if he can’t see a therapist.

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Age at interview: 24
Sex: Male
Age at diagnosis: 21
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But they do so much for me. I mean, I can even, if I can’t go to a therapist, I can ring my [local] Mind worker and just rant at 'em. I can just, ‘have you got half hour? Yeah. Right my day [laughs], has been right shit’ and they listen to it the whole time. They're fantastic. They really are fantastic. And, I cannot thank them enough, ‘cos a lot of my housing worries were ridiculous. They were ridiculous things. But they didn't even make me feel ridiculous about them. Every one I felt ridiculous about they said, ‘Why is that ridiculous? You're worried about a real thing, why is that ridiculous? Why is that ridiculous?’ And even that recognition is big, it's a big thing. And yeah, they've provided so much support for me. I mean, they’re only supposed to be my housing, my housing support, but they've been a friend as well. 
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.
 

Going on a residential camp with his youth club at age 14 helped Barry make new friends. Before going to the camp, he had been bullied a lot and had low self-confidence.

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Age at interview: 19
Sex: Male
Age at diagnosis: 16
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Because before that residential I had no friends. I was bullied regularly, and I’d always think the worst of people. And think the worst of what people think of me. Soon after the residential I started talking to people in my youth group. And someone called A, was there for me. And I met a lot of my friends through that person.

Oh, brilliant.

And then I just made friends off friends. And because it weren’t until I was fourteen that I done the residential, I guess I grew up a little bit slower than people. 

In the sense that when you’re younger, you have a laugh, you muck about with your friends and so on and so forth. But it weren’t until come, come sixteen, seventeen, I’ve only just branched out, making friends. So I’d, I’d make friends, friends through one friend, and that’s how my social circle kind of kicked off for me. It was – I had no friends transferred from school – it was all from the youth club that I went to. I still attend one there, I do Duke of Edinburgh awards and that can be good. It gives you a reason to do things. So like you’ve got a physical, a skill, and volunteering section. So you can gain a lot from it. As well as getting your awards at the end.
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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