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Psychosis (young people)

Support from family and friends

Some people we spoke to had family and friends who were there for them during the psychotic experiences but others had difficult relations with family members and friends.
 

Ruby talks about the impact of her psychosis on friendships and how friends have helped her. Her mother is very supportive, although she didn’t open up to her about her psychosis for a long time.

Ruby talks about the impact of her psychosis on friendships and how friends have helped her. Her mother is very supportive, although she didn’t open up to her about her psychosis for a long time.

Age at interview: 22
Sex: Female
Age at diagnosis: 19
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There have definitely been people that don't really want anything to do with me, because of it. I think, not because they necessarily judge me as a person, but because either the situation's too distressing for them, if I'm having an episode or they don't know what to do and they feel so helpless that it's easier just to not be involved. Yeah, but then other relationships it's definitely brought me closer to people, because when you're in that vulnerable state, you kind of just, you don't really have a filter. You kind of just say whatever you need to say and so it, yeah, it has drawn almost closer, but also some of my friends are so desperate to find a way to help that they went and tried to find other people's experiences and talk to people about what helped you. How can I help my friends and like one of my friends, when I'm struggling, she saw this thing on Tumblr that said, when a friend is struggling with their mental health, ask them what their favourite colour is, but, at that moment, but not like a simple colour, but like say if it was turquoise you need to find a picture of the exact turquoise that you liked the most out of all the turquoises at that specific time and send it back. And it's a distraction in that moment of intensity. And that friend doesn't live near to me. I mean we worked together when I was younger and yet she still manages to find ways to help, even though distance wise she's not that close. And, I mean, other friends, like it was my friend that found out about the speaking, listening, friend thing that and yeah, that made a world of difference that. It wasn't from a professional, it was just a friend oddly enough.

I was gonna ask you where that came from, yeah.

Just a friend was desperate to find something to help and that was- he spent hours looking. Yeah. It helped.

Brilliant. And what about sort of family, is there any other family there that's been supportive? 

My mum is supportive. So I have no contact with any of my dad's side of the family. But my mum and her partner are very supportive. Although it took me quite a long time to open up to them. It wasn't until October this year that they knew I had hallucinations. Because I was so worried about what they would think. But also my mum has physical health problems herself and stress and anxiety, 'cause it's a heart condition she has. Can really trigger a, a negative spiral that can lead to her being in hospital and a few times when I was younger she did nearly pass away and so that's always been a big fear for me that if I told her something negative that had happened then she would go into a negative spiral and I would lose the only family I have. But when I, the last overdose that I took was so serious they rang my mum and told her that they thought I was gonna die. 

She didn't know that I was in hospital. So, yeah, a big, a big shock for her. But it, it brought us a lot closer. I opened up about everything that I was experiencing.
Having good relationships with family and friends could be a huge support, but it could also feed into people’s psychotic experiences. For example, Joe has multi-sensory hallucinations about people he cares about being hurt. Some also pushed people who they cared about away when they were unwell themselves. Peter, who has self-critical intrusive thoughts, said he has “distanced” himself from people and has found it harder to trust people.
 

Dominic’s family would do anything for him. But having such a close loving relationship with his family is both his “crutch and symptom”.

Dominic’s family would do anything for him. But having such a close loving relationship with his family is both his “crutch and symptom”.

Age at interview: 24
Sex: Male
Age at diagnosis: 21
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My family are both my crutch and my symptom, strangely enough. If I went home today, crying, because I needed five thousand pound to move out, my mum would tell my sister and brother and my dad and everyone, the money would be there in a week. At the same time, they loved me too much. They love me to the point where I love them back and it drove me crazy, because [exhales] I have, have to, I don't have to be but I'm their protector, especially in my own mind and this is one of the things, you know, you have to, you have to lose some battles. This is the battle I constantly lose and I'm okay with it as well. This is the battle I can, I don't fight any more. I, when their voices start talking about this, I just let 'em go, because I can't, I've tried everything. I can't battle it. But being that, being their protector, it had a lot of consequences [coughs]. Whenever something happens, they call me. If someone, someone's outside getting aggressive, I'm there, 'cause I'm that person, I'm the big one, you know. But, at the same time, if I leave the house all the images- and this is like upsetting my images, is of them dying in horrific ways. Absolutely horrific ways. Most of the, the ones that gets me the most is these, the ones where I walk back home - I get images of this -where, I get the bus back and walk up home as normal. And outside my door, there's blood covered everywhere. My brother is on, my brother is on the floor, dying and he says, why weren’t you here. And that, it just kills me, really kills me [whispers]. 
Family
 
In our interviews people talked about their relationships with parents, brothers and sisters, grandparents and other extended family such as a godmother. 
 
The type of support people received from family included:
  • Helping them to avoid triggers
  • Spotting the signs of a crisis
  • Seeking medical help for them and visiting them in hospital
  • Being there to talk and listen
  • Giving them somewhere to live
  • Providing unconditional love and affection
 

Luke’s brother saw the signs that he was unwell and got in touch with him just as he was contemplating suicide after his first experience of psychosis.

Luke’s brother saw the signs that he was unwell and got in touch with him just as he was contemplating suicide after his first experience of psychosis.

Age at interview: 21
Sex: Male
Age at diagnosis: 19
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I'd say the most important family member is my brother. He has - he's got that sort of caring, looking over me type, anyway. I mean, even more so - it was in - It was September when I got signed off work, because I nearly killed myself. I was very close to suicide. 

That was 2016? So that was just gone?

Yeah. And that's effectively why I was signed off work.

Okay.

Yeah, it was my brother that noticed the small signs, more than anyone else.

Right.

He picked up on patterns of my social media use.

Right.

He realised I'd been going out drinking a hell of a lot that, in that week. 

Okay.

I think he realised how isolated I felt. And, yeah. He sort of said to me, you know, "Why don't you come round, have chat?" And when he invited me round, I was sat next to a shoebox full of medication. Enough to kill me. And I'd written a suicide note.

Right.

It was the closest I've ever got. I'd never written a suicide note before. And I went round to, went round to see him. And I was in tears. Literally. Minute into conversation, he's said "Let's go and have a cigarette. Let's talk about it." Then I couldn't hold it in. And I must have cried for an hour. Full on, all going that whole time. And he just drove me back home. From [the big city]. He said, "You've got to go home." And, of course I'll always remember that, what he did there. But it wasn't necessarily being the hero of the hour. It was more that he was the only one that picked up on those signs.

You know? Things that had I taken an overdose and died, people would have realised after. They would have gone 'oh blimey, he put that on Facebook'.
 

When Tariq was experiencing psychosis he would become aggressive and shout at his family. They would sometimes have to restrain him but in a caring way.

When Tariq was experiencing psychosis he would become aggressive and shout at his family. They would sometimes have to restrain him but in a caring way.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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To be honest my family were able to deal with me, even at my worst times,, you know, when they were able to restrain me when I got worse but they didn’t put much strength as a doctor, as I don’t know someone who is, you know, who works in the public service, someone like a police officer when they detain someone and try to restrain them, they put a lot of power down. My parents tended to just hold onto my hands but not put too much pressure on them because every time they did I became more angry so they tended, they knew what, how to restrain me and they made sure that they didn’t worsen my condition when they restrained me. But in hospital they restrain you, they don’t care how you feel, if your condition is worse they’ll hold you down, even if it’s painful you can’t shout and scream and stuff. So I think that being around my parents and my family has really benefited me.
 

Joseph lived at home after he came out of hospital. He describes the importance of support from his parents in giving him time to recover.

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Joseph lived at home after he came out of hospital. He describes the importance of support from his parents in giving him time to recover.

Age at interview: 22
Sex: Male
Age at diagnosis: 21
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So, what role do you think that the family's played in supporting you?

Well yeah, tremendously. In just, well the one - just giving me time to recover. And also, just in their conversations. Just going with, with what I was saying. And not really trying to control, or. Because I was quite resistant, in the first couple of weeks coming home. There was a lot of resistance. One, just - I just wanted to get back to the city, and. Yeah. Just wanting - Oh, the other thing was just wanting to go for a walk on my own. And I think that had been something my parents had been told that I shouldn’t do straight away. So I was, yeah. I felt housebound, pretty much. Well, I was, in some sense. Yeah. I think I said I wanted - I just wanted to walk to town, to get some razor blades. And I was just getting told that I couldn't do that. And then I just - Not something I'd ever done before, I just let out this huge roar. Yeah. And my Mum was just - she found that really upsetting. Just hearing me burst out with this roar. Because it was quite - yeah. Obviously an aggressive sound. And very unlike me. 
A few people didn’t mention family at all, or had a difficult relationship with members of the family. Emily’s father has bipolar disorder but they didn’t have the sort of relationship where they talked about things and being together just made their mental health harder to manage for both of them. Because of that Emily didn’t mention her voices for a long time. Ruby had been abused by her father, and he stopped her from seeking help and then made her homeless when she eventually did. Many no longer lived with family. Even those who did see family regularly sometimes hid what they were experiencing, because they themselves didn’t understand what was happening, or thought others would judge them. Nikki has had unusual experiences since her childhood but only recently started talking to her family about the voices she hears and Peter has never told his family about his intrusive thoughts. Andrew Z lives in student accommodation and although he’s only a short walk from his parents’ house he doesn’t really talk to them about his mental health. 
 
Family relationships can be complex. Some young people had had to adjust to their parents divorcing. While a few people said they had very good relations with all members of their family, often some family members were more supportive than others. For those who received support from family members, there was still a mix of emotions. Fran said, “They get on my nerves, my family, but they’re good. They care. Their hearts are in the right place”.
 

Sam talks to her sister most and her sister sometimes helps to explain things to their mother when Sam can’t talk. Her brothers don’t really speak to her.

Sam talks to her sister most and her sister sometimes helps to explain things to their mother when Sam can’t talk. Her brothers don’t really speak to her.

Age at interview: 18
Sex: Female
Age at diagnosis: 17
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My sister that I'm most closest to, she sort of works with, where she lives up North where she moved up North, she sort of works with people. She understands the medications and stuff that I'm on, 'cause she works with people who like are getting off drugs and stuff. So she understands sort of like the sort of medications that I have to go on and stuff I'm feeling. And I've spoke, like and she used to live with me when I was little. But it's just sort of hard because I can't just go to her and go see her all the time when there's sort of—and she's the only one sort of that actually wants to talk about it with me and doesn't wanna just like silence it, which you know and sort of helps with my talking to my mum and that when there's like when I'm—'cause I get stages or points where I don't tell anyone anything and that is never a good thing. So, but she sort of just helps explain it to my mum why I'm not talking and you know, and then my mum sort of comes and talks to me. And then she gets it out of me. But, it [exhales]. And some of my brothers just when they found out sort of that I was sort of like mental health hospital and stuff, they were just like, oh, and sort of stopped talking to me for like a few days and then started talking to me again after about a couple of weeks and just don't really wanna know about it. So, I don't, I just don't talk about it with them to be honest. I don't really mind 'cause I talk about it with my sister that I'm most closest to, so.

And then you're living at home at the moment?

Yeah.

And is that quite important to get that support and be around your family?

Yeah, 'cause they don't, 'cause I live on with just my parents 'cause I'm the youngest. So they don't sort of, well no. of course, when I was little like my, I had like my half brothers and sister and that here and, and 'cause they just now it's more times that I'm on my own. And it's more harder to sort of talk to sort of my parents and sort of say, you know, what's wrong and because I don't want 'em to think, you know, that I'm like some crazy lunatic, which I don't think they would. But I know they wouldn't. But, when I do have an episode or something it's like all I can hear is don't tell this person. Don't tell this person, because they told us that they'll, that they'll think this of you or you can't tell anyone or you, you know, you shouldn't tell. You can't tell like—sometimes I can't even tell like they won't even let me tell my own boyfriend like there's a problem. Like he has to literally like realise how I'm talking to him that there's something wrong. Like I can't even tell my own mum sometimes. Or I have to ring my dad because when he works at night or something at like two in the morning or something to say to him like when I've let everything build up. And, so that's why, probably why I don't sleep that well. 
Nevertheless family members input could be vital for getting young people help they needed and seeing how a family member reacted could also make people more aware that they needed help. Luke’s father, who had a diagnosis of bipolar disorder, was able to understand exactly what was happening to Luke and told him “there’s no way you can control this”. When Barry started having delusions and visions he was deteriorating fast and his mother took him to CAMHS, where he had seen an autism specialist in the past, and insisted someone saw him. A few young people lived with their families when they were very unwell. Their family looked after them to prevent them from being admitted to hospital
 
Sometimes family members who had their own experiences of mental health could be particularly well placed to support a young person if they were prepared to talk openly about it. Luke said, “My Dad is very sort of on the back burner. We tend to talk on a sort of a - what I'd describe as a higher level. Because he's got bipolar. We talk, we talk about - we talk in short. We don't need to explain stuff to each other. We kind of almost have a sort of a, this kinship that doesn't need any thorough explanation”. But Emily found that her dad’s bipolar disorder made their relationship quite “tense”. Her being unwell would trigger his bipolar disorder, and his being unwell would trigger her psychosis and she eventually left home because of that.
 

Tariq thinks that mental health professionals should allow family members to sit in during appointments with the psychiatrist, mental health nurse or crisis team and be part of the decision making process.

Tariq thinks that mental health professionals should allow family members to sit in during appointments with the psychiatrist, mental health nurse or crisis team and be part of the decision making process.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Yeah well I think one of the good ways of providing a very good tailored service would be for mental health expert, professionals to work with the families, to work with parents, to work with brothers and sisters in that family, to sit down and to talk to them. 

So for example I’m a patient it would be great if my parents and my family were able to sit down with my doctor, and my psychiatrist and the mental health nurse and the crisis team and talk together and find out the best way forward so that everyone feels involved, everyone feels they can contribute. And also then the family who have no experience of mental health services have a better understanding of the system, they are no, they know that in an emergency where they can take their son or daughter to, rather than them knowing nothing and then when an emergency arises they just sit there and say, “Oh my God, what do we do now?” I think that’s a good way, that’s a good sort of technique that could be used. I think that is not used and it could be used more frequently certainly.
People often recognised the difficulty that their psychosis caused their family - although not everyone noticed this at the time they were unwell. For some, family members had been there when they were experiencing psychosis and had seen them at their worst. This could be difficult for the family members. When Becky was unwell she was “lashing out” at those close to her and her parents distanced themselves because they didn’t know how to help her and she recognises it was hard for them. Some family members made extra sacrifices to care for their loved ones. Hannah’s mother had gone part-time at work so that she could give her the support she needed. 
 
Friends
 
Many people had lost friends through their experience of psychosis, but also made new ones. Those who experienced psychosis when they were in their teens could find friends were judgemental and unable to understand what was happening or know how to offer support. Nikki’s closest friend at school spread “rumours” about her psychosis when she confided in her. Lucy had a friend she had known since she was 4 years old, but when she told her she had experienced psychosis the girl never spoke to her again. Losing friends when she was unwell, felt like “rejection” for Becky and fed into her Borderline Personality Disorder.
 

Luke said while people under 18 would be able to show compassion for someone who has cancer, they find it more difficult to understand mental health issues.

Luke said while people under 18 would be able to show compassion for someone who has cancer, they find it more difficult to understand mental health issues.

Age at interview: 21
Sex: Male
Age at diagnosis: 19
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You know, you don't have your own identity at that point. So I think, you know - I don't think there's a solution to making it easier for young people. You know, perhaps under 18. Because you need everyone to mature naturally. But at the same time, go back to the bit about the physical illness. Even when you're 12, you have the capacity to understand something as serious as cancer. So if a friend of yours got cancer, even if you're 12 years old, you're going to look after them.

You're going to be sorry for them, you're going to go and visit them, you're going to be a great friend. You know? Everyone has that in their human nature. But I think with depression, with mental health, mental health conditions - especially psychosis - at that age, kids don't have the capacity to understand.
People also had very good friends who were there for them when they needed them. Lucy’s friends sometimes go to her house and say “I’m going to cook you a week’s worth of dinners and put them in the fridge”. Some wanted friends who they could talk to openly about their mental health. Luke’s group of friends -“rag tag band of misfits” - all had their own problems and were “absolutely fine with it”. Sameeha’s friends were open minded and weren’t put off by her brief experience of psychosis. This made her feel more normal about what had happened and meant she could talk openly to them, which made it easier to deal with. Andrew X says that feeling safe enough to be “vulnerable” with someone is what makes a great friendship. For others, like Green Lettuce, just being able to meet up for a drink and socialise was enough.
 

Sam lost a lot of friendships and finds it hard. She cherishes the friends she does have.

Sam lost a lot of friendships and finds it hard. She cherishes the friends she does have.

Age at interview: 18
Sex: Female
Age at diagnosis: 17
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But friendships are sort of harder. Because the friendships that I lost are people that I'd been friends with since I was like this high. 

So it's really hard that something like that like and like people said to me, obviously they are not true friends. But when you've been friends with them for ten, twelve years it's and then they don't wanna start not speaking to you as much, because of that without telling you, you know it's because of that. And you know, and I've basically got hardly any friends left. But the ones I do, I just sort of like [laughs] cherish and sort of, you know. 
 

Although Nikki has lost friends because of her psychotic experiences, she’s also found “amazing” friends who she’s very open with.

Although Nikki has lost friends because of her psychotic experiences, she’s also found “amazing” friends who she’s very open with.

Age at interview: 19
Sex: Female
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Do you think your experience of psychosis has affected your friendships?

I do, I think so, in a way, yeah. I've lost a lot of friends because they didn't know how to deal with it. And sometimes when I said things that they perceived to be strange or whatever then I've lost friends because of that. But then, I don't see that as my loss any more. I just think that's them not having much of an understanding and good for them, I hope they understand one day. And I have a lot of friends that do understand and that's more important to me. I, I have some really amazing friends that are just so supportive and amazing and they don't judge me and that's been great. And I feel like in a way me coming out and saying, you know, I do hear voices, it's helped other people to trust me with other things they thought they'd be judged for, because I am so open about it. But also it has had, it has been negative at some points that when I started college there was a friend from high school that went to the same college and they started going around to college saying, ''She hears voices, you know. Shouldn't friends with her.'' But then, I just said, ''Look, I, I get that you don't wanna be friends with me and you don't have to be, but you know, you don't need to spread rumours either.'' But luckily, a lot of the people at college, which were just like, ''I don't really mind you can hear voices. I'll still be friends with you.'' And it was just really nice but so I have lost friends but then I've gained the right ones. 
Meeting up with old friends could be challenging when they had moved onto new things, but could also be a support.
 

Joe has made new friends since he started experiencing psychosis. His friends are really important and he says he’d be dead without them.

Joe has made new friends since he started experiencing psychosis. His friends are really important and he says he’d be dead without them.

Age at interview: 23
Sex: Male
Age at diagnosis: 21
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Every part of my life has changed. Just irrevocably, irreversibly. But not necessarily for the worse. Some bits of it, yeah. But other bits, not necessarily. Like I still have the same friends, I'm still in contact with the same people. I've - Maybe two or three people that I don't speak to any more, because, as a direct consequence of this stuff. But I have probably made more friends than that. So like people from my CBT group I see quite a lot. One of them passed me on to you, so you know - you met.

Yeah.

Yeah. But. Yeah.

Okay. And how important has that support from friends been?

I would be dead if I didn't have them.

Wow. 

Just as a fact, as an objective fact.

Okay. So, knowing that they're there.

Yeah.
 

After he experienced psychosis, Joseph’s friends came to see him in hospital and visited him at home. He appreciated having conversations with them.

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After he experienced psychosis, Joseph’s friends came to see him in hospital and visited him at home. He appreciated having conversations with them.

Age at interview: 22
Sex: Male
Age at diagnosis: 21
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So, yeah. The support net- I mean, I had a good group of friends from before. A lot of them had gone to university, and obviously we all moved apart, but some of them - when they'd heard, they would sort of come around, and met up with me which was really useful.

With you after you'd come out of hospital, sort of -

Yeah. Yeah. Mmm.

And have you kept in touch with them, or?

Yeah. Yeah. All of them, yeah. See them regularly now, so.

And were they quite understanding? Did they understand what was happening?

Yeah. The nice things was, they didn't ask too many questions. Because I wasn't ready. And didn't really know partly what had happened. And over time, I've developed a way of telling my story in a nutshell. Which I feel people can understand. And you'd also be surprised how - Obviously it does depend on who you're talking to. But on the whole, you'd think with the stigma, and - I just felt everyone wouldn't understand, or. But it's funny, the people I've told - especially close friends - have just been, "Wow, you've - you've seen a lot." [laughing] you know, they just - yeah. Then there's no judgement. And they're just pleased that I've recovered. 
Most people had made new friendships, through support groups or while in hospital, and also through hobbies or at university. Dominic said that gaming was a very “social experience” for him and the people he met through it were like minded and very accepting. But some people said it was hard to make new friends and that they struggled to trust others. When people had made new friends while they were experiencing psychosis, it could be difficult to work out whether the friendships were real. Dominic had a six month “episode” during which he had false memories continually and although it was a really happy time, when it ended he felt unsure about the friendships he thought he’d made during that time.
 

Andrew Z talks about the difficulty of meeting up with old university friends. He finds it hard knowing that they have graduated and found work, while he is still studying.

Andrew Z talks about the difficulty of meeting up with old university friends. He finds it hard knowing that they have graduated and found work, while he is still studying.

Age at interview: 23
Sex: Male
Age at diagnosis: 20
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And the friends who you were in touch with, right at the beginning when you were sort of 20 are they still—

I'm still in contact with one or two, yeah. I haven't seen them. I'm still in contact. Obviously different cities. I'm planning on seeing one in a month in January. It would be the first time I've seen him in what, three, four years something like that, something like that. Again, it's quite difficult, because you're comparing yourself to them, because they've all graduated and stuff and you've obviously had all these mental health problems and they're working and in full time work and you're still plodding along and at university, if you get what I mean and you've had a year of unemployment, it's kinda yeah. In some ways, it's a bit annoying when you have to, 'cause you find it quite difficult not to compare yourself to them.
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