Psychosis (young people)

Advice to others from people with experience of psychosis

The people we interviewed had general, and some more specific, messages to society, to medical professionals and to friends and family members about psychosis. Many felt that there was a need for more compassion and understanding for people who experience psychosis and that each person with experiences of psychosis should be treated as an individual rather than others making presumptions about them. 
 
General message about stigma and mental health
 
People we spoke to felt it was important to speak out about psychosis and felt there was a need for better and balanced information in schools and in the media. Sam has been made to leave college because of a lack of understanding about her psychotic experiences. She hears voices that sometimes tell her to hurt others but has never acted on them and she knows she “wouldn’t hurt a fly”. She says there’s a presumption that everyone who hears voices is a “psychopathic killer”.

Tariq wants to send a message to society that mental illness is not something to be ashamed of, but it’s prejudice against those who experience mental illness that is shameful.

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Tariq wants to send a message to society that mental illness is not something to be ashamed of, but it’s prejudice against those who experience mental illness that is shameful.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Bill Clinton once famously said that mental illness is not something to be ashamed of but stigma and bias shames us all.” And he’s absolutely right, he got it spot on, straight away because he said, “On the one hand we shouldn’t be ashamed, patients shouldn’t be ashamed that they’ve got a mental health difficulty, irrespective of if there are sensitivities or not in their community they should feel proud that, you know, they’ve experienced mental health difficulties but that’s part of life you shouldn’t be embarrassed of it, if you suffer from it don’t be embarrassed.
Advice to other young people who experience psychosis
 
People we spoke to had lots of advice for other young people experiencing psychosis such as:
  • Get help
  • Accept who you are 
  • Be patient
  • Things will improve
  • Little things help, like establishing a routine
People wanted other young people to know that they shouldn’t feel any shame or blame themselves because of their experiences of psychosis, and to accept it as something that has happened. They wanted others to know that they can have a full life.

Hannah thinks people shouldn’t be afraid of their diagnosis.

Hannah thinks people shouldn’t be afraid of their diagnosis.

Age at interview: 19
Sex: Female
Age at diagnosis: 15
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If you had to give one bit of advice, what would it be?
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To not be afraid of the diagnosis. It doesn't make you a bad person. I think it can be portrayed in the media and TV shows like the word psychotic is used to describe a murderer, but that's not who you are. So, don't be afraid of yourself because of that description that's flying around. It's an illness and it's not your fault.

Joseph says it’s important to know, and let others know, that the psychosis will end and that you can be your own agent of change.

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Joseph says it’s important to know, and let others know, that the psychosis will end and that you can be your own agent of change.

Age at interview: 22
Sex: Male
Age at diagnosis: 21
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At least from a lot of people around me at the time, might have heard about psychosis or similar sort of mental health disorders, but on the whole you don't know a lot about it. And even if you do, you might not have seen one in person. And even if you've seen one in person, it might be very different to the one, or the person you care about. And so that's why I'd like to share more, and it's just for like fear reduction. So I feel the more you know about these sorts of things, it's - and the more you know about how 'oh, it's temporary' - okay, a lot of people do live with this for the rest of their life, but it's not like, 'okay, Joseph's crazy now, and he's [laugh] - that's how he is for the rest of his life'. He's not. Yeah, just to show people that - just say to them, "It does end." And just don't have that fixed view of what life will be like. Like it's literally anything - yeah. There's a lot of things, like knock-backs and stuff, that are going to make it difficult, and cuts in funding, and all these sorts of things. But that's not to say you don't have your own agent of change to actually do something about it.

Tariq encourages people to carry on with life and not feel embarrassed about their psychosis.

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Tariq encourages people to carry on with life and not feel embarrassed about their psychosis.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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To, that they too can persevere, even though they’ve got mental health difficulties they can preserve not to feel embarrassed of their mental health difficulties, that to continue with life and to keep on working at what they’re doing and not to be taken, not to let anyone pull them down because I think that if you let that happen then what will happen is that you’ll go down and it will affect you really badly. But if you persevere and if you ignore those ignorant comments you will persevere in life and I feel that I’ve persevered. Even though I haven’t got a PhD yet I think I’ve persevered and I’ve shown people that through my experience I’ve positively done things constructive in my life that a lot of people can learn from and a lot of people can adopt to their own lifestyle. 
Sam would encourage young people to get help and support as soon as possible; “Don’t take as long as I did to come forward about it… at the end of the day the more help you get, the better you feel". Barry wanted other young people to know "that things do get better and it’s not going to be like this forever". Connecting with others was important for many people.

Ruby wants young people to know they are not alone and that there are others waiting to connect. She thinks family and friends should accept what’s happened and not pretend it isn’t happening.

Ruby wants young people to know they are not alone and that there are others waiting to connect. She thinks family and friends should accept what’s happened and not pretend it isn’t happening.

Age at interview: 22
Sex: Female
Age at diagnosis: 19
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I think for the young people themselves, you are not alone and there are people out there that you can connect with. Locally, to me, there's no face-to-face groups that meet up, but I have made some of my closest friends and met them in person through online groups for people, young people struggling with psychosis with BPD with depression with mental health in general. Reach out to those people if you feel that that is what you need, if you need to know you're not alone in terms of other people experiencing the same thing. But also not to be scared to reach out to those closest to you. Some may react badly, but those people will never be, their negative reactions will never outweigh the people whose positive reactions could potentially help you survive the most difficult time of your life and move on to, to living a full life. In terms of friends and family, I would just say, listen. Don't say, ‘oh you can't be experiencing that or that's not real’. Validation is really important like, for example, saying, ‘I know that that must feel really difficult for you. And I'm gonna stay here. I am not experiencing it, but I know you are and that's okay. But we will get through this and you can carry on or you can do whatever it is in that situation that needs to be done’. And also there are groups out there for, for carers, for friends and family, connect with them as well. 
Many felt it was important for young people experiencing psychosis to give themselves space and do things that make them happy, and to remove things in their life that are stressful or make them feel bad, and to learn from their experiences.

Dominic recommends that people keep a very frank diary because it can help to get things out of your head. He found it useful reading back what he’d written and being able to get some perspective on it.

Dominic recommends that people keep a very frank diary because it can help to get things out of your head. He found it useful reading back what he’d written and being able to get some perspective on it.

Age at interview: 24
Sex: Male
Age at diagnosis: 21
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Make a diary. Whether it's electronic, whether it's physical, make a diary. In that diary, write everything that happens. Everything. I first started using my diary as a measure of a bad day. So on my really bad days, that's the only time I write in it. My really bad days I would write, today, I've considered suicide at least this much more than I did last time. I've considered doing this this much more than last time. I've almost given into the voices and gone and killed this guy. I went to the shop anyway. But while I was doing that, I had a panic attack. I wrote in all my bad days at first. And then when I had another bad day, refer to it. There is a bad day? Not really. So what's that mean. Can I do something with this, with this information can I actually go out maybe? Or should I just take it as a bad day, right it down and learn from it next time. But, the diary is what I use so much, because [one second pause] the way I feel about mental health is up here. It's not a hole in your head. It's not a gash in your face. It's up here [indicates head]. And what's up here will go round and round and round over and over and over again. There will be no end to it, I promise you. Writing it down makes it so much easier. 

Because one, you can hear writing crap sometimes, you write down things that are just ridiculous, like, oh, this ridiculousness. Why were you even thinking about this? Other times you write down something that was going through your head at the time and that's just enlightening that you go, wow, I thought of that. I, I said that. Why would I say that unless it's true? There's other things that you write down that you're gonna hate about yourself. But writing 'em down gets out of here, even if it's just for a second. Get it out of here and you can read it and when you read it you can just take it from a different perspective and go, okay, this doesn't actually sound so bad now. And that's what I would say is, get a diary and take every win. Write that win in the biggest letters you can find. Get a billboard if you have to. Write your wins down and take 'em as much as you can, because that's what I do. And I have this power over my voices now that I don't think I'd ever have. I thought I'll always gonna be the scared kid in the corner, crying my eyes out every day. That's what I thought my life was gonna be from now on. I went and did stuff and now I'm this person who I'm gonna be helping people soon. Actually helping people soon.
People also shared their personal experiences of managing their wellbeing and their psychotic experiences.

Dominic says it’s important to find what works for you. When he purposefully “listens” and responds to what the voices say, the “power shifts” and they have less effect on him.

Dominic says it’s important to find what works for you. When he purposefully “listens” and responds to what the voices say, the “power shifts” and they have less effect on him.

Age at interview: 24
Sex: Male
Age at diagnosis: 21
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You can't win every battle. You will exhaust yourself trying to respond to everything they say. The way I deal with it is I compromise, with the voices. I talk to them and so if I'm in an environment where I can't be doing psycho things right now, I say, look, guys, I hear your concerns. I can, I can feel the anger you want me to feel. But right now, I need time to do this and I will talk to you later. And I have to follow up on those, on those promises as well. I can't just say, ‘I'll talk to you later’ and then later on be like ‘I'll talk to you later’ [laughs] can't just do that. 'Cause that's when they'll really start to - but with me, I will then put aside ten minutes later on in the day where I'm alone and I'm in peace and I'll say, ‘Right, [inhales] what do you wanna say to me?’ And we'll talk it out in a strange way it is strange, because I say some things out loud, I say some things in my head. That's why I do it alone. But if, for example, one of the concerns was a lot of my concerns are based around men behind me or men giving me a weird look. If one of their concerns was, that guy needs a beating because he looked at me that way. Then I say, ‘Look, look, look, I know that, I know that he looked at me that way. But, what happened from it? What evidence have you got that proved what you were saying is right? Nothing happened. You, you were trying to do what you always do and create something that wasn't there. And because I didn't react to it, you are angry, but that's fine, because I understand. I understand why you're angry. But I'm not going to act on it on everything you want me to do.’ And they don't like it sometimes. But, even if they don't like it, the power shifts and that's what's important, the power shift shifts slightly over to my side. And then what they're saying has a lot less effect. 

And it's, the advice I'd give is it's finding what works for you. But don't be afraid to try. There's a lot of things your brain can do. A lot of ways it can trick, trick you and trip you up. But, you have to learn yourself that not everything that happens in your head is real. It's called, confirmation bias. When something happens, if you're powered by something and you're constantly looking for evidence that that backs up that paranoia, rather than looking at the broader picture. 

Green Lettuce tells people who are hearing voices to ignore them, get a 'proper routine' going, and mix with other people.

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Green Lettuce tells people who are hearing voices to ignore them, get a 'proper routine' going, and mix with other people.

Age at interview: 25
Sex: Male
Age at diagnosis: 20
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If you are getting voices in the head telling them stuff that they don’t want to know, ignore it, try your best to ignore it no matter how much it’s saying it. But try and keep your mind as occupied as possible. And try and get a proper routine, daytime routine. That you awake in the normal hours. The night times in my opinion can make it worse. Because you’re not interacting with other people and that definitely doesn’t help at all.

People had the following advice about getting help. For those who hadn’t yet sought help, Becky said, “You are worth it and it is worth getting help, even if you don’t feel like it at the time. Even if it’s for somebody else’s sake just stick with it and there will be a better day at some point.” Andrew Z said, “Get on the medication, get as much support as possible.” 
 
For those who had already sought help, people said it was important to make sure you are getting the right support for you. Lucy says if you think your medication or other support isn’t right then it’s important to tell your mental health team, because everyone is different and the treatment might not be the right one for you.
 
A few people we spoke to had taken drugs in the past and felt that contributed towards them having psychotic experiences. Fran, who had taken drugs, thought it was important for young people to be more aware of how drugs can affect you.

Fran says that if you are using recreational drugs and alcohol and this is affecting your mental health you’ve got to “look hard in the mirror”.

Fran says that if you are using recreational drugs and alcohol and this is affecting your mental health you’ve got to “look hard in the mirror”.

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What would you, any message or advice that you would give to someone, a young person who’s in that --

Just, “don’t take drugs.” Or you will end up like me and spend three and a half years of, if you are prone to that sort of mind. That is to know, don’t take drugs anyway. Or you’ll, I mean my best friend died, died of like, like a heroin overdose. It’s not nice. 

And I’ve spent three and a half years locked up. I couldn’t leave. A building not much bigger than this, for six months they wouldn’t let me out of the building. 

At the hospital?

And banned from going to like, from like, to like America for another eight years or something. And it’s like just, and it, that’s not worth it, is it? If I could go back, I wouldn’t do it all over again, not at all. It’s scary.

What would you say to someone who, who’s been in the same situation and they’re wondering, “How can I move forwards?”

To move forward, you have to look at your life and go, “Oh, my God, my life is awful. Oh, my God, I’ve been a dickhead for like years. If I don’t sort this out, I’ll just be a revolving door psychiatric patient who’s got a drugs problem and serious emotional problems.” And you’ll lose everybody. You’ve gotta look that hard in the mirror. Then you’ve gotta completely change your life on like a radical level. 

And you’ve got to accept there’s loads of stuff you can’t do no more. You’ve got to like spend nights in bored out of your mind while all your friends are going out to parties. Because you’ve got to maintain your mental health. And then it starts to get better. But you have to want to make a change that badly. Cos when you get as ill as I was, they said I’d never get better.

So you’re proving them wrong aren’t you?

Yeah. I know a few other people who have, they were told they’d never get better. And now, like my friend [friend’s name], they, he was on a ward for like three years straight and in a psychiatric prison. And now he goes round the world doing talks and lectures and stuff. And they told him he’d never get better. 
Advice to mental health professionals
 
People often had a range of experiences with mental health professionals and some had strong feelings about things that were particularly helpful or unhelpful. 
 
Young people who we spoke to felt that mental health experiences were often very personal and thought that treatment and support needed to focus on the individual rather than on the diagnosis. Mental health professionals who treated them as individuals and took the time to talk and listen were seen as most helpful. Nikki said, “It's really important to take the time to listen to someone and just ask about what it's like to experience it. The more you can understand what's going on for them, the more you can help them to find a way out.”

Luke says that patients should be treated like non-executive directors, and valued for the perspective they are able to give into their mental health experiences.

Luke says that patients should be treated like non-executive directors, and valued for the perspective they are able to give into their mental health experiences.

Age at interview: 21
Sex: Male
Age at diagnosis: 19
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I've got a lot of respect at the moment, because the trend I'm seeing in mental health is that patient perspective is becoming hugely important. Hence this whole thing we're doing today.

Exactly.

This whole website is about - It's not relying on the health professionals, it's relying on me-

People, yeah.

Yeah. Want to learn a bit about psychosis? Maybe watch one of my videos. You know? Or the video. And just keep that trend going. Keep respecting the fact that patients have a better insight than you'll ever have. You know? If – Who's going to know more about bipolar? The patient with bipolar or the person who's read a book about bipolar? That's, that’s the point I'm trying to make. But of course you do need the academics, you need the people that read the books and the theories, because they're better at putting them in the second book. But, yeah. Keep that trend going, I like it.

That gives a whole other perspective on the move towards - you know - involving patients in decision [inaudible] people in decision making about their choices, and all that sort of thing. Yeah

It's hugely important. I think patients are like non-executive directors. You know? Non-executive directors are paid decent money to do not much, just offer their perspective. And I think patients are free non-executive directors. And they're subject matter experts that would be really crucial when it comes to big decisions in the boardroom. Or future, you know, future discoveries or advances, yeah.

When Joseph was delusional he found it most helpful when staff just let him talk.

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When Joseph was delusional he found it most helpful when staff just let him talk.

Age at interview: 22
Sex: Male
Age at diagnosis: 21
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It's probably easiest to say what I felt useful, and not useful. So, yeah. So the patience definitely,. Which is, can be hard if they've got a hundred and one things to do. But I did find the majority of nurses did have the time for me. And yeah, that was probably the best thing. They just sort of - to talk things through. And not to give a blockage - So, when I was saying more delusional thinking, as far as I remember, no one said, "Okay, stop that, that's ridiculous - just stop." They, they went along with it. To a - Yeah. In a - Yeah, it's a balance. Because you don't want to go along with it so much that it just affirms all the delusion, and you think 'wow, someone else is actually agreeing with me'. And then you just become more delusional. But it's just, yeah. Letting someone talk, and express it. 
Empathy was seen as important. Young people who we spoke to were very aware when staff were not “up to the job” and seemed not to want to be working in mental health or had no empathy. Sameeha remembers a member of staff being “offhandish” and “rude”. She says you can tell when staff don’t want to be there and don’t have any sympathy. Sameeha says its important for mental health staff to view things through the eyes of the person experiencing psychosis and to engage with them appropriately. For example, if the young person is agitated and scared they might not respond well to being told what to do.

Nikki is training to be a mental health nurse. She feels that her own mental health experiences mean she can really empathise with people who are unwell.

Nikki is training to be a mental health nurse. She feels that her own mental health experiences mean she can really empathise with people who are unwell.

Age at interview: 19
Sex: Female
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Okay, so you're training now to be a mental health nurse. What's that like?

It's good. It's tiring and it's a lot of work. It's definitely worth it though. It's annoying when you have to wake up at 5 am to go and do a 13 hour shift. You don't get paid for it. But it's still worth it. Still worth it. It's just difficult, but I enjoy it. I'm looking forward to finishing this, the course though.

And do you think that your own experiences make you, you know, add value in terms of what you offer there as well?

100%. I think the fact that I've been through the things that I have has really really helped me to have empathy and to be kind and that's the most important thing. I've spoken to a lot of people, I've said, you know, what do you think it takes for someone to be a good nurse? And they say, you know, someone that can understand, someone that can be nice. Someone that can be patient. Someone that can be empathetic. And, I have all of that in bucket loads because of what I've been through. So I think that has really helped, yeah. 

Andrew Z says it’s important to be empathic and not treat all people who experience psychosis as the same.

Andrew Z says it’s important to be empathic and not treat all people who experience psychosis as the same.

Age at interview: 23
Sex: Male
Age at diagnosis: 20
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I was given a mentor at one point. And I kind of didn't work—he wasn't very good. Not to be rigid with their thinking. Not to base too much around being the—to be kind of just naturally empathetic and think on the spot. And think, not to think like, he's in that category, you know, think about the person as an individual rather than thinking about them as they are the category psychotic law. Psychotic people are the same. People like, you know, or another category to think, yeah. Kind of if he was a bit of a rigid when I was unemployed. He was a bit he was a bit, you know, he was a bit rigid. He kind of tried to develop strategies for me to help me, which didn't seem to fit into my problems or my personality. He just seemed to be the general label that I was in and this was a strategy he'd heard of, if you get what I mean. Look at the person as an individual, yeah. 

And is there anyone that has done that?

Yeah, the team, basically. The mental health team, yeah. The psychiatrist is very good here. He's very empathetic and very person orientated. 
People also had direct advice for mental health professionals about the kind of treatment and care that was needed. Peter felt the NHS should provide people with more information about psychosis to help them gain a better understanding of what’s involved.

Sameeha suggests when people first come into hospital they need to just sleep for a few days and then have someone chat to them about what’s happened to bring them back to reality.

Sameeha suggests when people first come into hospital they need to just sleep for a few days and then have someone chat to them about what’s happened to bring them back to reality.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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So personally I feel one way to deal with it is force the people to sleep whether it means just putting them onto something. Just make them sleep for a couple of days, because I've spoken to a lot of people and a lot of people say, like, they just didn't get to sleep for like four or five days and obviously that's really like quite the concern. So it's just get a lot of sleep and then ask questions and then every day try and ground them back to reality, so it would be like, hello, your name's Sameeha [surname] they just wanna to confirm you’re 22. Just wanna confirm you live here. Yeah, just bring them back to reality, do you know what I mean? Just make ground them back to where they're supposed to be, 'cause that helps like sleep, grounding and then try and, try and speak to them and ask them what's the matter. 'Cause it, it helps regarding the quickness, the swiftness of their recovery. Whereas everything else, I think it complicates things more. I do think medication does help regarding the kick start of it. But even I, I remember there was times where I just like hid it under my tongue and they, they didn't know, kind of thing. So, I wasn't taking it consistently. And straight after, the whole thing in January I just refused to take them, because I wanted to rely on my own mental strength. So I think although medication is always necessary no matter what, it should always be kind of like last resort. Let's see if we can get them on, on their own strength and on their own mind, on their own kind of like mental foundation. So they don't have to rely on all these things. 

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.

Discussing treatment options and allowing young people to be involved in decisions about their care can make a huge difference. Lucy says being asked her opinion made her feel the treatment was more specific to her.

Discussing treatment options and allowing young people to be involved in decisions about their care can make a huge difference. Lucy says being asked her opinion made her feel the treatment was more specific to her.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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I think most of them could listen better. I think they know what they're expecting to hear. And I think they kind of assume that most people are kind of the same. Because although they say to you, "Oh, everyone's different, everyone's treated as different. We want to work out what's right for you." I think actually the impression you get is that they're kind of just saying "Oh, we tried that on that last person, so you can have that medication too." And they don't really kind of let you decide for yourself. Like the best psychiatrist I saw gave me a list of medications, described each one, and said, "Which one do you want to try?" And although okay, he still had a lot of influence in it, he was like "I think you should take this one." And of course I went with the one that he recommended. But it felt a lot more like I was getting a say in it. And that it was about what I needed, rather than just this is sort of the first one we try, then it's that one, then it's that. And it was a bit kind of more specified for me. 
You can also read more about people’s experiences of being in hospital for psychosis and receiving support and care from outpatient services and GPs.
 
Advice to friends of young people experiencing psychosis
 
Having friends who cared was something people really valued. They wanted their friends to just be around and not be afraid. Sometimes it can be difficult for friends to know what to say. Hannah’s advice was to never say to someone experiencing psychosis that their experience isn’t real, because it’s very real to them. Also, it’s not helpful when other people claim to have had the same experience. Joseph said: “I think something people generally should avoid saying is, "I know exactly how you feel." Because that can feel a bit alienating, and like - you know - 'no, you don't'.” Hannah advises friends to keep in touch and says its better to try and say something even if its difficult, than to just lose touch. For her, little things like asking ‘how are you feeling?’ instead of ‘how are you?’ makes a difference because ‘obviously you are not good’, but there will be times when you ‘feel’ better or worse.

When she has been unwell Lucy has texted friends telling them to ‘stay away’ and she understands it can be difficult for friends to know what to do. She thinks it helps if friends find ways to show that they care on a regular basis.

When she has been unwell Lucy has texted friends telling them to ‘stay away’ and she understands it can be difficult for friends to know what to do. She thinks it helps if friends find ways to show that they care on a regular basis.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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I think be patient. And if people kind of have like weird delusions about friends - I know at some points I've had, I've messaged friends saying, "Stay away from me, because I think you're trying to kill me." And I think from the point of view of the friend, that's really difficult to know what to do. Because you kind of want to respect someone's wishes and not come near them, and maybe they do need space. But I think you have to kind of reassure them constantly that you care. I think - I think when you're the friend, if you've told someone that you care two months ago, you think that you've said it. But to that person, they probably need to be told every week, or every couple of days, because they're not going to believe you. It probably takes a lot of saying for it to really stick. And that sometimes you need to kind of show it, and not just say it. And take care of people's kind of like physical needs, like - might make someone feel a lot better if they just had a clean house. And food.
Advice to family members of young people experiencing psychosis
 
Young people wanted family members to be there for them but not to restrict them too much. It was important for parents to allow them to be teenagers/young people and go through all the emotions that a young person would, without feeling it’s a problem. Becky says that the best way family can help is to not expect too much from you and acknowledge you are doing your best.

Dominic says that the best thing you can do if a loved one isn’t talking about what they are going through is just give them a hug and let them know you love them unconditionally.

Dominic says that the best thing you can do if a loved one isn’t talking about what they are going through is just give them a hug and let them know you love them unconditionally.

Age at interview: 24
Sex: Male
Age at diagnosis: 21
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If you feel like you can talk to your family then do it. But for the family members, the best thing you can do for somebody that isn't talking to you about it is give them a hug. Touch them on the shoulder every now and again, make them know that they're loved. Because them talking to you, them not talking to you about it isn't that they don't trust you. It isn’t that they don't, they don't feel like you don’t respond well. It isn't nothing like that. It's so many different aspects that makes them not wanna talk about it to you. But, you loving them unconditionally regardless of the fact that they don't talk to you about it is just such a big boost. When I, when I walk in for my therapy session and my sister and brother is there and I look like [exhales] everyone comes over and hugs me, individually and all together and they say, we love you, Dom. Just we'll sort out the dinner and whatever or whatever. 

Sameeha says family always do things out of love but they have to be careful not to overdo it.

Sameeha says family always do things out of love but they have to be careful not to overdo it.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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I think family always come from a good place like they always come like it's “oh we care for you”. Especially that time when I was in that place, my family had come to the hospital. My mum and my sister they had come and made sure that I was visited every day, which is great because you're just stuck there doing nothing. So having people come there and visit you is a good support system as well. Just to let the time go by. So, yeah, no, having them there and just it's always, it's always nice to have someone concerned for you. But I think with family, with family they've got to be careful because sometimes someone's over concern can be really really constricting to deal with. So it's just like they need to know that you're human and anything that you do shouldn't always just be that, it might be the psychosis again or, or this behaviour seems like that. Are you unwell again? Are you unwell again, Sameeha? I'm just like, no, calm down whatever, it's fine, it's fine. It's just like, be aware that, that you can be supportive and you can be there for your child or whoever. You can be you can be their rock but you don't need to overdo the concern. You don’t need to overdo like the watching. You don't need to take responsibility for it or unless that is someone's because they have themselves. They have their own being. They have their own mind and they don't need you or like the family is kind of over, over-watching of you to make sure you fine like the person's most likely always got it, kind of thing. 

Max thinks family and friends need to be more accepting of how people are when they are experiencing psychosis.

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Max thinks family and friends need to be more accepting of how people are when they are experiencing psychosis.

Age at interview: 19
Sex: Male
Age at diagnosis: 16
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I think for friends, family, relatives, when they - have struggled with mental health difficulties. I think people need to be more accepting. And, obviously if the, yeah. I think people need to be more accepting. Because even if it’s prolonged and they’re still doing things that’s not right. They need to be told that it’s not right, and they need to, deal with their actions. And that if it happens in any other, other scenario, there will be consequences. But I think when someone is mentally ill. Let’s say you’ve, you believe that you’re going to go insane, and the only way you can prevent that is by getting some leverage over someone else. I’ve had a ex who was mentally ill. And she lost control of her actions, and she hit me. Not that hard, but she hit me. And then she went behind the tree, behind a tree, like she was - she didn’t want to go near me, because she was guilty of her actions, and she thought I was someone else, because she was seeing things. I think, when someone is mentally ill, they do things that they wouldn’t normally do. That was probably the main things that happened when I was at that ward. 

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