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Psychosis (young people)

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 others might see them, or worried about not being able to manage intrusive thoughts, voices and images when they were in public. Being in a relationship was also a source of support for some, while others felt it was something else to manage and could cause more problems.
 

Since he left university, Peter has found it hard to socialise and thinks his self-critical intrusive thoughts make it harder for him to trust others.

Since he left university, Peter has found it hard to socialise and thinks his self-critical intrusive thoughts make it harder for him to trust others.

Age at interview: 24
Sex: Male
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Does it affect how you socialise, going to do hobbies, or?

Yeah. Yeah, because I’ve kind of got into a, a thought pattern now of, kind of because I’m not doing anything in particular, or anything big, or yeah, definitely affects me sort of like that. Because I have - not necessarily purposely, although maybe I have done, where I have sort of distanced myself from people and not - Because you don’t see people on a regular basis anyway, it’s kind of easier to sort of lose contact with people. And, yeah. [siren in the background] I’ve kind of not so much gotten to that point of giving up contacting people, but sort of just kind of like - you get that sort of 'why bother' type thing, and. Yeah, I definitely haven’t met up with people as much, or done social things for quite a few months really. For a while. With sort of the exceptions of graduating. But yeah, I definitely think it kind of affects relationships, as well.

Right.

I think it definitely affects your trust in people, and things like that as well. Yeah. I think it makes me sort of not do things, if you put sort of a simple term on it like that. It makes it a lot easier to say "I’ll just stay at home and do nothing, or just do this," if I can’t be bothered to do something.

It makes it a bit easier to say no to people and stuff, you know. 
Social life and psychosis

For young people, being socially active is important for mental wellbeing, and plays a role in developing and maintaining friendships, pursuing interests and hobbies outside study, and getting on in work. But psychosis can interfere with this and make it harder to make friends.
 

Andrew Z loves socialising but when he has periods of psychosis his “buzzing thoughts” means he can’t concentrate on his studies or on socialising. Being unwell at the start of college meant missed out on a critical time for making friends.

Andrew Z loves socialising but when he has periods of psychosis his “buzzing thoughts” means he can’t concentrate on his studies or on socialising. Being unwell at the start of college meant missed out on a critical time for making friends.

Age at interview: 23
Sex: Male
Age at diagnosis: 20
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Whenever I've had psychosis, I can't concentrate on my work and I can't concentrate socialising. You know, I mean the buzzing thoughts mean I can't sit still. I can't concentrate on conversation. Often sometimes the thoughts would be so concentrated fully on my head that I kind of will start reacting them. So, I would be talking to someone and suddenly my facial expression will start smiling or something and obviously becomes or comes across as a bit peculiar. It was just a bit frustrating, because obviously I kind of the only thing I really enjoy doing in life is kind of socialising and talking to people. And I go through periods when I've got psychosis and I kind of can't really do that, which is quite frustrating. And I kind of like the people contact.

I think being out of it for a while can make it quite difficult to get back into it, if you get what I mean, yeah. And it's quite frustrating when you are like you've had a psychosis episode and you know that lots of people have got to know each other in new accommodation and stuff and you've been out of it. So you kind of and they can end up assuming maybe he has been out of it because he's not interested in getting to know us, if you get what I mean. Kind of feels like it's too late, you know, over several months, he's never talked to us and therefore he's kind of maybe he's not interested. Obviously, how do you communicate to people that I have just had a psychosis episode and I am interested and I am even if you did do that and can still be several months where you haven't, where they've all got to know each other and you haven't. 

As I said, it's quite, it's quite frustrating knowing you've missed out on stuff. But it's also quite difficult because you need to get like an episode and also you can develop anxiety you haven't experienced before, because of that.
When people started feeling unwell, because of the nature of their psychotic experiences, socialising, and even just being out of the house, could feel like an impossible challenge. Psychosis could impact on, or happen alongside, low mood and low self-esteem and people often felt isolated, unable to talk to others about what they were experiencing or that friends and loved ones didn’t understand what they were going through.
 

Lucy has a large friendship group. Now she can’t work she has less money for socialising and doesn’t feel like going out. She prefers having a friend over to her house.

Lucy has a large friendship group. Now she can’t work she has less money for socialising and doesn’t feel like going out. She prefers having a friend over to her house.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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And I find big groups very difficult now. And my friendship group is really big. So it does kind of restrict a bit what I can do. Because actually a lot of the time what I want is for a friend to just come and sit with me. But what other people want to be doing is going out, and just kind of enjoying themselves, and. And also I think the lack of income kind of comes into it. Because if you're out for a meal, and then everyone else is there just enjoying yourselves, and you're thinking 'that's, you know, a fifth of my income this week if I have dinner with these people', it does kind of change how you feel about going out.

And then some days it's just too much effort to kind of get up and have a shower and get out of the house, and get to places on time. So I'm finding that people have to kind of force me along. So there's a couple of friends that really feel quite strongly that it's good for me to get out of the house and be around people, so I'll kind of say "Oh no, I don't think I'll come." And they'll go, "Are you sure?" And then I'll say "Yeah, yeah - I'm sure I don't want to come." And then they'll turn up at my house anyway, and be like "Well, you're coming." [Laugh]. So "I'm here now, you've got to come." 
Some people struggled to trust others, or had experienced stigma first hand. Becky said, “You don't wanna see anyone, especially if you feel like everyone's against you”. Sam had friends who didn’t understand what she was experiencing and thought she was “crazy” and a danger to others. 

Socialising could put people in positions that made them anxious or even create triggers for a psychotic experience. Hannah finds that scary images trigger her visions. This can affect her in many ways and restricts what she can do: for example she has never been to one of the big theme parks because some of their rides are based on horror imagery, and she didn’t go to a friends’ paint balling party because she worried that the masks might trigger a psychotic episode.
 

Tariq finds that being in a hot or crowded place, such as a bus or a tube makes him anxious. It makes it harder to go out and travel anywhere or meet people.

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Tariq finds that being in a hot or crowded place, such as a bus or a tube makes him anxious. It makes it harder to go out and travel anywhere or meet people.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Well, yeah well the worse one is, and that’s why I was, talking about keeping the windows open because I still have anxiety issues. whenever I’m in a heated place I get very anxious, whenever I’m in a crowded place I get anxious, whenever I’m on a bus I get anxious, whenever I’m on a tube I get anxious, whenever I’m in a car I get anxious. Wherever I am where there’s people, where it’s hot I get anxious, I get sweaty I get, that makes me very uncomfortable, it makes me very conscious of the people around me, it makes me very alert, you know, and I see people as a threat rather than people that are trying to, who are my relatives or whatever and that makes me distance myself away from everyone, walk out the house or stand outside or whatever and exclude myself from everyone else. That’s some of the, that’s one of the experiences that I’ve had and I’m not sure about the other ones, I can’t remember because of the medication again, a lot of, you know, the medication blocks a lot out so, what was the question again?

I was asking about what effect your symptoms have on your life?

Yes well they have, I think they have the most significant impact on my life because it affects my day to day life of going out every day, meet, meeting with people, mixing with people, mixing with crowds, getting on public transport, getting into cars, you know, it, it really affects me really badly, you know.
Recreational drugs and alcohol

A few people whose social life involved drugs or heavy drinking felt this may have contributed to their first experiences of psychosis. Luke, who was later diagnosed with bipolar disorder, said that he had a lot of energy to socialise when he started a new job in the city, but he was “always the last one out”, drinking more than others and he began to have delusions. Luke said, “There's so many control points in my life now, which sometimes I resent. I'm 21, and I've got to control how much I drink, can't just go out and have a session”. Fran and Green Lettuce had used recreational drugs socially leading up to the start of their psychotic experiences. Many of their friends still used drugs and drank to excess and it could be difficult to be around them.
 

Fran lives in an inner city flat where alcohol and drugs are everywhere. She wants to move to the countryside where she can get the peace and quiet she desperately needs.

Fran lives in an inner city flat where alcohol and drugs are everywhere. She wants to move to the countryside where she can get the peace and quiet she desperately needs.

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Yeah, it’s part of my plan. I mean I’ve had to tell so many people to go away, and that’s not the easiest thing to do. But then when all these people are your neighbours, it’s just like, you’re just desperate to move. Because I’ll go to the shop and I’ll see like, “Come for a can.” And it’ll be like, “Mate, it’s 8, it’s 8 in the morning.” And then I’ll be like say, “I’m not coming for a can.” “Oh, you think you’re too good for us now, don’t you?” It’s like, “No, but I just ended up in the psychiatric hospital. Enough’s enough.” Like, yeah, but.

So moving will be really good for you?

Yeah. And it’s, basically it’s still like [place name]. It’s quite near my mum’s house. Which is nice. I can get one bus into town, so it’s not too far out, but it’s basically in the countryside at the same time. And I’m just like, really love the idea of just walking around. And there’s some really beautiful walks round there.

So your mum and family will be nearby?

Yeah.

You’ll know, it’s not like you’re in the middle of nowhere?

Nowhere, yeah. So I’ll know my way back into town and everything. I just need peace and quiet. I need peace and quiet like seriously.

Will you still be able to get to work and all your other..?

Yeah. Not as easily, but one bus. So it’s alright.
 

As Green Lettuce started getting better he went out with his friends to the pub. It was hard to begin with because his friends were smoking weed and he wasn’t but he got used to it.

As Green Lettuce started getting better he went out with his friends to the pub. It was hard to begin with because his friends were smoking weed and he wasn’t but he got used to it.

Age at interview: 25
Sex: Male
Age at diagnosis: 20
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It felt like I was socialising better, and getting to talk to my friends that I’d known for years. Most of them anyway. And like I always wanted to keep, keep in contact with them, because they were my friends at the end of the day. But it just got difficult. Then, they, then I started like going to the pub and drinking, not much, but just like a pint or two with them, and playing pool and staying out for longer. And it gradually helped. My friends did help a lot. And it was difficult, because they were smoking weed, like when I wasn’t, and that’s not, well at that time that wasn’t easy. But I’ve been in the same situation since then and I find it a lot easier now.

And what was it about your friends that helped?

Just talking to them again, but other things, like norm… like football or music or something, not weed. That’s all we used to talk about really I’m not just weed.

That sounds familiar [laughs]. So you were mainly going down the pub, just having a couple of games of pool. That kind of thing?

Yes.

Did you go out to concerts. Football?

Not really no. 

And how did it feel, you know, inside your head at that time when you started to go out a bit more?

Oh I thought it was helping a lot, and I’d try and do it more often. I did. It did help a lot. Because I found that the more occupied my brain was, like the more I was talking to people, the more it helped. It was like blocking the voices out of my head. So that’s probably half of the reason it helped.

And did the voices die down when you were speaking and things like that?

When I was speaking, they were, not as apparent, because my attention was more on the conversation that I was having at the time. Rather than what was actually going on in my head. Yeah.

So they were sort of in the background?

Yes. 
Relationships

A few people we spoke to had been in or were in a relationship, but others were not or didn’t want the added pressure. Being in a relationship could be a source of support. But people recognised that their experiences of psychosis added an extra layer of challenges. Luke, who recently broke from a 4 year relationship which was very up and down, worries about telling future girlfriends about his experiences of bipolar disorder.
 

Sam’s current boyfriend talks to her about her psychotic experiences “like it’s a normal thing”. He looks past the mental health experiences and sees “the person” in her.

Sam’s current boyfriend talks to her about her psychotic experiences “like it’s a normal thing”. He looks past the mental health experiences and sees “the person” in her.

Age at interview: 18
Sex: Female
Age at diagnosis: 17
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And I guess like he sort of, I’m lucky like I said like 'cause he sort of understands psychosis a bit. And sort of like knows how to sort of like, like how to handle me, in a sense. And doesn't label me. That's the thing like most people that I've been with before have sort of just sort of labelled me as crazy and psychotic, basically. And not really understood it and not wanna talk about it and not wanna deal with me or speak to me when I'm having a crisis. But, so I wasn't really expecting like. When I first met him in November, I wasn't really like expecting him to sort of wanna talk about it and stuff. But he was like, he still talks about it to me like it's just a normal thing. He doesn't sort of, which I think is a good thing, he doesn't sort of like like make it like a big deal. He just sort of says, you know, that's part of your life and it's not part of his own. But, you know, and not everybody's but you know, and that's just something you've gotta deal with. But, I think that's how he sees it. But he sort of looks past that like past the mental health problem and sees the person in me, not the issue, which I think is good. But, but it is like 'cause like 'cause I started talking to him before we actually got together, I started talking to him as friends and he's just sort of helped me through it anyway. But it was just sort of like, it's [exhales] I don't, I don't know like it's hard to sort of tell the person that like 'cause I get like when I have like a really bad episode or something and I get a lot now on my own, especially. 'Cause when my mum goes to bed early or like I’m down here on my own. I have to be on the phone to someone or to him just so I'm not alone, 'cause I start to think I sort of see things in the mirror and sort of freaks me out and I get paranoid and yeah. 

Doesn't end well. But so it's just, it was a bit sort of difficult sort of saying to him, you know, this is sort of what's wrong with me [laughs]. You know, I don't, 'cause I didn't want him to sort of like—'cause we got on so well like in the first time we met and stuff, 'cause he lives sort of two hours away from here. So, it's sort of, the first time we met and that at the train station and that in [the local area]. I didn't really wanna like say it straight away, because like I didn't wanna ruin anything. But he sort of like found it out anyway, because like when we was like on our own and that and here and stuff and I started like freaking out and he like didn't sort of, he knew it wasn't anxiety, basically. He basically said to me, ''I know what's wrong with you.'' Without me even saying anything, which I thought was you know, he used his head, basically. But yeah, so but I think not everybody is like that, which is what I've sort of realised like the past people that I've been with and stuff like the person like I said before like they just didn't wanna know and didn't wanna talk about it with me. Didn't wanna talk to me when I was like that for a few days and basically said I was like faking it. Which, you know, but I'm sort of glad that I sort of found someone who looks sort of past that, but still helps me, you know.
 

Joseph’s girlfriend was there when he collapsed at the start of a psychotic experience and she has been with him throughout his experience.

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Joseph’s girlfriend was there when he collapsed at the start of a psychotic experience and she has been with him throughout his experience.

Age at interview: 22
Sex: Male
Age at diagnosis: 21
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And what about sort of - you know - your relationship? You mentioned your girlfriend.

Mmm.

How important has that been? And how do you think the experience of psychosis has sort of changed that, or affected that?

Yeah, it's definitely - without being too crude - she's helped me go to the toilet, and changed me, and all of these things. It's definitely created another level of [laugh] - a sort of stronger bond, that either - I mean I think, you know, she could have quite easily just said, "I'm not dealing with this." And gone another way. And there has been sort of difficulties following. But on the whole, I think - yeah, has just made it stronger, and. I think it's nice having someone who was with me throughout, still there. It's just not that I present symptoms now, but if I'm a little bit over-excited sometimes, it's nice having just someone that is kind of keeping an eye out. And sometimes someone will say something like "Oh, be careful." [Laugh]. Or whatever. Like notice maybe an early warning sign - and it's just me being a bit more perky one day, or. So it's difficult to say whether you want people to watch out for you or not. I would kind of argue that I'd like people to look out for me as much as I'd look out for them, or anyone else that hasn't experienced anything like it in the past. Because just as much as I need people looking out for me, to prevent relapse, people - I needed it when everyone needs it, before they’ve ever experienced anything. So I don't like people treating me different for that.
Some people worried that anyone who was in a relationship with them would have to go through the ups and downs of their psychosis with them. Lucy avoids being in a relationship because she thinks it would be easy to expect the other person to “fix” the problems in her life which might put too much pressure on the relationship. But Becky feels more positive. In the past she has blamed others for the way she was feeling and thought if they loved her they would “put up with” her whatever she did. She thinks she lost a lot of relationships because of that and now tries not to expect too much from others in a relationship. She thinks, though, that it’s important to have someone who is willing to try and understand you and not judge you for what you do.
 

Luke broke up from a 4 year relationship just before he was feeling suicidal. He describes how his ex-girlfriend “rode the waves” of his bipolar disorder with him but feels relieved now that he doesn’t have to worry about anyone else.

Luke broke up from a 4 year relationship just before he was feeling suicidal. He describes how his ex-girlfriend “rode the waves” of his bipolar disorder with him but feels relieved now that he doesn’t have to worry about anyone else.

Age at interview: 21
Sex: Male
Age at diagnosis: 19
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I was with my ex-girlfriend - I got together with her when I was 16, nearly 17 at the time. Ooh. We broke, we properly broke up in September. I remember it was the 4th of September we broke up. And it was the 10th of September the brother drove me home. But I wouldn't - It was a big part of it, but maybe it was the fact that I was in such a bad place, it wasn't a good place to have a relationship and that's why it broke down. But in those - in what was nearly four years, it was just over four years [sigh]. We, we, I think we broke up about four times, and got back together. Very destructive relationship.

The, the first episode of psychosis, I remember - it was very difficult for her, she was at university at the time. And, yeah. She'd, she'd do her best to come visit me in hospital. And geographically that was tough, because she was at uni.

But generally just the waves that, that I'm surfing on - I feel that in that relationship I sort of - my ex-girlfriend was on the, on the surfboard with me, riding those waves. And I think that's - that makes for a very difficult relationship, when you know, you might, you might think to yourself, you know, 'is this guy worth it?' Is it, you know? On, you know - but also at the same time, I think [clears throat] if you're in a relationship with, with someone with bipolar or with psychosis, you - you're going to see a fantastic side of them, sometimes. When they're on a high. You know, you're going to get the whole package. But then at the same time you're on a low. You, you can, you could say, you could say, "Oh, I love you." And I'd turn round and go, "I'm not in love with you." Or, I wouldn't - I wouldn't be able to show emotion when I'm, when I'm depressed.

So I think it's very difficult. And the position I'm in now is, I've been single for - you know - five months. It’s been a little while. And I like to think of myself as happy being single. Because I've not got anyone that I've got to worry about.
Being in a bad relationship could be detrimental and contribute to people being unwell. Nikki said that, as with friendships and relations with family, when people don’t understand what’s going on it puts a strain on things. Dominic was with a girl for a year and she was abusive towards him. He thought it was just “normal”, but when he left the relationship he felt “even more messed up” than when it started.
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