Psychosis (young people)
Psychosis and other mental or physical health experiences
Psychosis commonly occurs as part of other mental health diagnoses such as bipolar disorder or schizophrenia and sometimes also Borderline Personality Disorder and severe depression.
People we spoke to talked about other mental or physical health experiences that impacted on their lives, including:
- Depression, severe anxiety and low mood
- Autism
- Asperger’s Syndrome
- ADHD
- Physical health challenges
A few also said they used recreational drugs and alcohol as part of their social life and that this affected their psychosis.
When other health experiences were at their worst, it could be harder to manage hallucinations and paranoia associated with psychosis.
I started becoming kind of weird thoughts, weird interpretations of social events. Kind of getting slightly stressed. Kind of the weird thoughts were kind of affecting my ability to function with my flatmates, with my course mates with everyone and then they cut my, 'cause I had a support mentor, specialist tutor since I was, when I first went there, because I have Asperger's as well, when I was diagnosed when I was eight. They cut that, because it was- for everyone not just for me- in November. I then got really stressed, really piled up my work and I couldn't really concentrate on my work for more than about five minutes. 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. And I, one of the things I am interested in is psychology and things like that as well. And I then they kicked me out of the university, 'cause I got so behind with my work in February. That then sent me over the, tipped me over the edge and took quite a bad psychotic episode
Depression, severe anxiety and low mood
When the funding for Andrew Z’s Asperger’s support was cut he got very stressed and the intrusive thoughts in his head got worse.
When the funding for Andrew Z’s Asperger’s support was cut he got very stressed and the intrusive thoughts in his head got worse.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Many people we spoke to were experiencing depression and severe anxiety alongside their psychosis. Some had been given a diagnosis of “depression” but others had been seeing school counsellors in their early teens or had been referred to CAMHS for anxiety and low mood when they had their first experience of psychosis.
For some, depression, anxiety and low mood had been a part of life from a young age (sometimes due to bullying in school or traumas in childhood). Nikki, Peter and Luke experienced depression from their early teens and Joe doesn’t “really remember being happy” before his first year of university. (See our website on low mood and depression more generally in young people.)
I've had issues with depression. Which probably sort of mid teens, maybe started about round 15, 16. And that was when I was in sixth form, and I started seeing a - seeing a counsellor. So I had these issues with depression going on. But they weren't sort of latent, they were - they were disruptive. And like when I left school after A levels, when I went to [a big city] and worked for [a multinational professional services firm]. It was about in my second week at the firm. That I got psychotic, and I got sectioned. It wasn't a great start to work. I mean, I was in a high security mental health ward at 18. And it was a, it was a crazy experience, just to experience it. It was, you know - I started to think MI, MI6 were onto me. I started to think that I was god. I thought I could predict the result of the Scottish referendum. My brain was working a thousand miles an hour, and it was quite scary for my friends and family. Couple of friends had come to visit me, and her friend - we lived in a flat together And you know, they started to - they were saying "Oh, what's up with Luke?" I started to go walking at midnight. I couldn't sleep, for days. It sort of culminated in my Dad ringing up the police and the ambulance. He said, "There's no way you can control this." And sort of next thing I know, I'm waking up in a ward. In a 136 room. Which is a glorified padded cell.
So I think probably maybe a couple of years ago, while I was still at university. I kind of - I think a few years ago I’d entered sort of a deep kind of depression episode. Due to various different things, but also kind of around my Dad die- passing away, about into my second year.
And so I’d always had kind of depression and anxiety, and. But I’d never really sort of noticed how deeper it went, or kind of how much worse it got during this period. And so I think it was during this time I started to notice things like voices in my head. My own sort of voice became a lot more vocal in my head. I started to talk, talking to myself a lot more, and started to hear my own voice doing like - yeah, like a running commentary a lot. Yeah. A lot of the time it was mostly at night time as well, when you kind of, lay in bed trying to go to sleep and then you can notice a running commentary in your head. But yeah, it was probably just during this period when I was kind of noticing it more. But not really at first thinking of what to do about it. Because I’d always kind of heard about things around depression and how it can have - sometimes they call it like intrusive thoughts.
Well, when I was nine I went and saw someone for depression for a couple of years. And then, sort of stopped like. That went on for a couple of years and then I sort of stopped telling anyone anything and told everyone, I was fine. Didn't keep, didn't tell anyone anything. Built a load of stuff up as I went into secondary school. Sort of developed anxiety and then got to year 10 and then, then ended up going to, a nearest mental health hospital for anxiety and depression, and extreme depression which then, last year, got, turned into psychosis.
Well, when it started being anxiety, I wasn't like hearing my name from the corner of the room or objects or anything, it was just more sort of oh, everyone, someone laughs goes past me, everyone think they're laughing at me. That normal voice your own voice in your head just sort of telling you, they're laughing at you or they're talking. If someone goes past talking loudly past you they’re talking about you and stuff like that like normal anxiety. I wasn't, I knew that was what it was, but it wasn't until year 10 that I realised I was just sat in. That's when I sort of got merged, I sort of started refusing going to my lessons because of it. Because I started like, I'd have like an object on the table and I’d sort of hear it like having a conversation with me and one or more times in beginning of year 10 I'd had a full conversation with a pencil case and I know it sounds stupid, but I'd be the only one sat on that table and people just looked me like, who are you talking to. And then, I’d just not say anything and I'd just walk out. And then, I've started sort of when I was in certain classes I started refusing to go to my certain lessons like science for that.
And then I decided like after I'd been in put in, head a house office to do my work, they tried to reintroduce me. But because that time it sort of escalated and I’d start- my depression would come back and I'd started to see things which I knew was a sign of depression. Because I have family members that have it, but only have depression with that. And I'd started to like see shadows, stood outside classroom doors, then come in- through walls I couldn't stay in the—like classes like that. And I used to just run out and like I'd get my stuff, pick up my stuff, not saying anything and just walk out and go home. Or go somewhere else like go out of the school, 'cause the gates were always open.
So, about diagnosis, if you go through my patient records you will find I've been labelled with schizophrenia, with—I suppose sometimes they just put psychosis and they make a word up, put in front of it or after it. Loads of different types of psychosis. OCD, adjustment disorder. I don't know where that one came from [laughs]. It's like, I think, I must have had some problems or something, oh well, he's clearly not adjusting adjustment disorder - where did that come from? Bipolar what else, depression, anxiety they were always labelled in there somewhere. I think probably one of the only ones I haven't got is personality disorder. Which we could probably speak for a long time about that. But so I've been labelled with all sorts. And [sighs] it makes, diagnosis, to me is irrelevant, right, it means nothing. I've been labelled with so many things, it's like what, for me what I've labelled myself with is psychotic depression. I think that's not an actual thing, but for, it makes sense. So, looking back on my experiences and reviewing all my patient notes and, and doing all that work, I know that I start to become psychotic when I start to experience stress or depression. That is when the psychotic thinking starts. So, that, to me, that's where it fits in. So that's what I've, I've just like myself, I've given the label to myself. And you look at some people sometimes and you look at some professionals and you can tell they're proper judging you [laughs] when you say that I've diagnosed myself. But the other diagnosis that I've been given, the other labels for me was just meaningless.
Some people who had never experienced low mood, anxiety or depression, noticed that periods of psychosis seemed to happen at times when they were stressed, and a few felt there was some link between them. Sameeha had never had low mood, but was highly stressed and anxious around the time of her first experience of psychosis.
Luke, who was diagnosed with bipolar disorder, experienced depression since his early teens. He started having delusions that MI6 were “onto” him soon after starting a new job and moving to a big city.
Luke, who was diagnosed with bipolar disorder, experienced depression since his early teens. He started having delusions that MI6 were “onto” him soon after starting a new job and moving to a big city.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Peter suffered depression and anxiety for years which got worse after his father died, and he began to notice his own “voice become a lot more vocal” in his head.
Peter suffered depression and anxiety for years which got worse after his father died, and he began to notice his own “voice become a lot more vocal” in his head.
SHOW TEXT VERSION
PRINT TRANSCRIPT
And so I’d always had kind of depression and anxiety, and. But I’d never really sort of noticed how deeper it went, or kind of how much worse it got during this period. And so I think it was during this time I started to notice things like voices in my head. My own sort of voice became a lot more vocal in my head. I started to talk, talking to myself a lot more, and started to hear my own voice doing like - yeah, like a running commentary a lot. Yeah. A lot of the time it was mostly at night time as well, when you kind of, lay in bed trying to go to sleep and then you can notice a running commentary in your head. But yeah, it was probably just during this period when I was kind of noticing it more. But not really at first thinking of what to do about it. Because I’d always kind of heard about things around depression and how it can have - sometimes they call it like intrusive thoughts.
Sam had seen someone for depression at the age of 9. When she started secondary school her anxiety got worse and eventually “turned into” psychosis and she started hearing voices and seeing things others couldn’t see.
Sam had seen someone for depression at the age of 9. When she started secondary school her anxiety got worse and eventually “turned into” psychosis and she started hearing voices and seeing things others couldn’t see.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well, when it started being anxiety, I wasn't like hearing my name from the corner of the room or objects or anything, it was just more sort of oh, everyone, someone laughs goes past me, everyone think they're laughing at me. That normal voice your own voice in your head just sort of telling you, they're laughing at you or they're talking. If someone goes past talking loudly past you they’re talking about you and stuff like that like normal anxiety. I wasn't, I knew that was what it was, but it wasn't until year 10 that I realised I was just sat in. That's when I sort of got merged, I sort of started refusing going to my lessons because of it. Because I started like, I'd have like an object on the table and I’d sort of hear it like having a conversation with me and one or more times in beginning of year 10 I'd had a full conversation with a pencil case and I know it sounds stupid, but I'd be the only one sat on that table and people just looked me like, who are you talking to. And then, I’d just not say anything and I'd just walk out. And then, I've started sort of when I was in certain classes I started refusing to go to my certain lessons like science for that.
And then I decided like after I'd been in put in, head a house office to do my work, they tried to reintroduce me. But because that time it sort of escalated and I’d start- my depression would come back and I'd started to see things which I knew was a sign of depression. Because I have family members that have it, but only have depression with that. And I'd started to like see shadows, stood outside classroom doors, then come in- through walls I couldn't stay in the—like classes like that. And I used to just run out and like I'd get my stuff, pick up my stuff, not saying anything and just walk out and go home. Or go somewhere else like go out of the school, 'cause the gates were always open.
Andrew X has been “labelled with all sorts” of diagnosis which he finds “meaningless”. He becomes psychotic when he is stressed or in a depressed mood and thinks the term “psychotic depression” describes his experience better.
Andrew X has been “labelled with all sorts” of diagnosis which he finds “meaningless”. He becomes psychotic when he is stressed or in a depressed mood and thinks the term “psychotic depression” describes his experience better.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Depression, low mood, high stress and anxiety could also occur after a period of psychosis: Luke described it as “the catastrophe that comes with [psychosis]”. Joseph said he had post-traumatic type symptoms and couldn’t deal with day to day activities like changing his bed sheets.
Self-harm and thoughts of suicide with psychosis
There is some evidence that people who experience psychosis are more likely to be at risk of self-harm and suicide (NHS Choices December 2016). However, psychosis is a very varied experience and not everyone we spoke to experienced self-harm or suicidal thoughts. Those who did, talked about specific things that led them to think about self-harming or about suicide: such as low self-esteem (‘self-loathing’), low mood and depression, or fear and anxieties caused by bullying or abuse.
Self-harm and suicidal thoughts, or attempts, had been part of life before psychosis for some people, but coincided with the first experience of psychosis for others. Nikki, Sam and Ruby had begun to self-harm before their first psychotic experience. When she later started experiencing psychosis Ruby’s voice would command her to self-harm. But Tariq, Luke, Andrew X and Lucy all had thoughts of taking an overdose or ending their life around the same time of their first experience of psychosis. Sometimes suicide attempts were what prompted people, like Lucy (below) to receive help with their psychotic experiences.
So I took an overdose in July. When I was in hospital - when I came out, I was with the crisis team, and the crisis team kind of got a psychiatrist on board and then asked me a lot more questions than like the GP would have done. And they, they kind of - I talked about the thoughts in my head not being from me. It was almost like a voice. In that I didn't feel like I was in control, or thinking it myself. And they said - so they put me on antipsychotic medication. And then within a few months of that, I was referred to the community mental health team, who then referred me to the early intervention psychosis team.
Darren is- my dad was abusive and Darren does the things that my dad used to do to me when I was younger and so, in a way, because I have no contact with my dad now, it's my brains way of trying to process what was going on, which, when I'm feeling how I am now, I understand that. But at the time, it's too real and too involved for me to be able to get that perspective and that Alice is me as that child that was being hurt when I was younger, desperately trying to get somebody to help me with the screaming and the other things. Yeah, so once we worked that out, it was a little bit easier I mean, I still experience them and they still cause me quite a lot of distress at times, but it's a lot easier to have them in the background now without having to worry too much if they're not interacting, they are just kind of there. It's kind of easy to live with. Yeah. I mean, they've got me into lots of dangerous situations. I mean, Darren tends to- so, for example, once I was at church and my friend, [name] who has epilepsy she had a seizure and Darren said to me, if you don't hurt yourself in a particular way 400 times, then that's gonna keep happening until you do. So I went and did that. And of course then we both landed in hospital, so it's not really an affective way of dealing with it. But at the time, I believe that if I don't do what he says, he has that control there are times when I believe he can get inside, other people's minds and control them and make them do stuff. Other times like once I saw Alice, she was on the train tracks and so I wasn't on the train tracks, but I was stood by them trying to convince her to get off the train tracks, but she wasn't, there was nobody there as far as everyone else was concerned. And so that led to a section, because obviously I was putting myself in danger, but I thought that I was helping. So it can be quite, yeah, difficult, because at the time you have no real awareness of the real world. It's kind of just everything is so intense with that experience, it just takes over.
Ruby, Emily and Lucy still talk about self-harm and thoughts of suicide as part of their lives.
I think a lot of the time I was feeling kind of like just checked-out a bit, like numb and empty. And I think I started self-harming just because it was better to feel like the self-harm pain. And just to kind of see some kind of emotional output, rather than just because I'd like kind of want to cry and just not be able to. And just kind of feel all like pent up inside, that I couldn't let things out. And then I think self-harming helped that for a while. But I think - I still do it now, and I think now it's kind of become like an addiction that I can't - Even if I wanted to, I can't stop it. Like I just kind of crave it, sometimes.
And does it sort of take time to get to that stage? Are you sort of aware of it getting to that stage, or?
It does - it kind of builds up a bit. But then it kind of very suddenly will get really awful. And I don't - I'm not very good, I guess, at working out when I need to get help before then, because I feel like I shouldn't go and ask for help when things are quite mild and I'm just noticing a bit of, you know, not feeling great and thinking bad thoughts. But actually I probably should get help then, and then maybe it wouldn't escalate into the position where I don't think I'm in control and I'm looking at everything and thinking how could I take that to harm myself. But it does, it just slips. And then suddenly like nothing they kind of suggest really works. And it always, always ends up with like a crisis, and - or an overdose, or - or harming myself quite badly in some way.
Autism and Asperger’s Syndrome
Lucy had been in hospital after she took an overdose. Afterwards she spoke for the first time about the thoughts in her head being “like a voice”.
Lucy had been in hospital after she took an overdose. Afterwards she spoke for the first time about the thoughts in her head being “like a voice”.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Ruby hears the voices of her younger self and her abusive father, which she now calls “Alice” and “Darren”. Sometimes Darren tells her to do things that involve self -harm or putting herself in danger.
Ruby hears the voices of her younger self and her abusive father, which she now calls “Alice” and “Darren”. Sometimes Darren tells her to do things that involve self -harm or putting herself in danger.
SHOW TEXT VERSION
PRINT TRANSCRIPT
When Lucy felt “numb” self-harming was a way to get some “emotional output”. She still self -harms and finds it difficult to ask for help.
When Lucy felt “numb” self-harming was a way to get some “emotional output”. She still self -harms and finds it difficult to ask for help.
SHOW TEXT VERSION
PRINT TRANSCRIPT
And does it sort of take time to get to that stage? Are you sort of aware of it getting to that stage, or?
It does - it kind of builds up a bit. But then it kind of very suddenly will get really awful. And I don't - I'm not very good, I guess, at working out when I need to get help before then, because I feel like I shouldn't go and ask for help when things are quite mild and I'm just noticing a bit of, you know, not feeling great and thinking bad thoughts. But actually I probably should get help then, and then maybe it wouldn't escalate into the position where I don't think I'm in control and I'm looking at everything and thinking how could I take that to harm myself. But it does, it just slips. And then suddenly like nothing they kind of suggest really works. And it always, always ends up with like a crisis, and - or an overdose, or - or harming myself quite badly in some way.
Several of the people we spoke to had received a diagnosis of autism or Asperger’s syndrome. When he was young Barry was diagnosed with autism and Andrew Z was diagnosed with Asperger’s. Because of their diagnoses, they both already had support in place when they began to experience psychosis later on. When Barry experienced psychosis his mother took him to a service run by CAMHS where he was seen by a counsellor who had worked with him, because of his autism, in the past. But Hannah, who had always struggled with making friends, only found out she had Asperger’s when she was assessed in hospital after seeing visions. She says her life would have been very different if she had known earlier.
People we spoke to had different views about whether or how psychosis and Asperger’s or autism may be related.
Yeah when I was in hospital, the psychiatrist said that he thought I should be tested for Asperger's, which is the first time I'd ever heard of the term, anyone referring to me as that, possibly having it. And I did get tested and I do have Asperger's. And I think that is very closely attached to why I have experienced psychosis. So 'cause of the, the anxiety that's connected to communication and with other people and I've always found it difficult to communicate and understand people as easily as other people do. So the pressure and the anxiousness that comes with that, I think has led to the depression and psychosis.
So it was, sounds like that was quite helpful.
Yeah, really helpful to understand that that's what it was that had led to it, so I could understand how to improve myself.
And do you think that changed the way that they dealt with the psychosis from a medical perspective as well?
Yeah
That you were aware of. I mean, did they say, you know, because of this, we'll send you on this route instead of that route.
No, not really. They didn't change much. They just spoke to me about how this is why it's been happening. It was like, oh, makes sense now. I don't think a lot of people have maybe heard of the connection between autism and psychosis. But there is a definite link that should be looked into.
Yeah and had no-one ever investigated that before for you?
No. I'd been through CAMHS. And the whole education system and no-one had come up with that, I found it shocking.
And does it make sense in terms of you know, your whole life or do you think it was something that only started later on in your teenager anyway Asperger's.
It makes sense in my whole life. Because they had to do an in-depth interview with my parents and they said that it was apparent from like birth. I would be very different in how I'd play with people and talk to people and that sort of thing. It was clear, but no-one saw it.
And your parents have never come across it or no-one had ever said that to them?
No, I think it's a problem with girls with high functioning autism to be noticed, because I was always the good girl in class and the person that the teachers would be like, I wish we could have thirty of you instead of everyone else, because I just listen and get stuff done. So they wouldn't have thought anything different. I think, in boys that it's more apparent that they'll have challenging behaviour issues and that will make them stick out so that they will be noticed, but for people like me it wasn't the case.
I suppose I've always been kind of had racing thoughts and struggled to filter things out and been quite, had manic phases in my life, if you get what I mean.
That would have been even sort of..
All my life. I mean, as a child, as a child, but particularly more so as a teenager.
Would that be associated with the Asperger's anyway or I don't know much about Asperger's or not really.
No, no. But I suppose I've always been, I've always been a kind of high risk factor for psychosis and things like that. For what little I know of it. I knew one or two things about it before I had it. But for like, you know, things like kind of racing thoughts and stuff like that. And quite stuff like that.
Physical health experiences
Hannah, who has Asperger’s, has always struggled to communicate with others and understand them and she thinks that the pressure and anxiety caused by this is “closely attached” to why she experienced psychosis.
Hannah, who has Asperger’s, has always struggled to communicate with others and understand them and she thinks that the pressure and anxiety caused by this is “closely attached” to why she experienced psychosis.
SHOW TEXT VERSION
PRINT TRANSCRIPT
So it was, sounds like that was quite helpful.
Yeah, really helpful to understand that that's what it was that had led to it, so I could understand how to improve myself.
And do you think that changed the way that they dealt with the psychosis from a medical perspective as well?
Yeah
That you were aware of. I mean, did they say, you know, because of this, we'll send you on this route instead of that route.
No, not really. They didn't change much. They just spoke to me about how this is why it's been happening. It was like, oh, makes sense now. I don't think a lot of people have maybe heard of the connection between autism and psychosis. But there is a definite link that should be looked into.
Yeah and had no-one ever investigated that before for you?
No. I'd been through CAMHS. And the whole education system and no-one had come up with that, I found it shocking.
And does it make sense in terms of you know, your whole life or do you think it was something that only started later on in your teenager anyway Asperger's.
It makes sense in my whole life. Because they had to do an in-depth interview with my parents and they said that it was apparent from like birth. I would be very different in how I'd play with people and talk to people and that sort of thing. It was clear, but no-one saw it.
And your parents have never come across it or no-one had ever said that to them?
No, I think it's a problem with girls with high functioning autism to be noticed, because I was always the good girl in class and the person that the teachers would be like, I wish we could have thirty of you instead of everyone else, because I just listen and get stuff done. So they wouldn't have thought anything different. I think, in boys that it's more apparent that they'll have challenging behaviour issues and that will make them stick out so that they will be noticed, but for people like me it wasn't the case.
Andrew Z says he’s had “manic phases” since he was a child and there’s always been a “high risk” factor that he would experience psychosis. But he doesn’t think his psychosis happens because of his Asperger’s.
Andrew Z says he’s had “manic phases” since he was a child and there’s always been a “high risk” factor that he would experience psychosis. But he doesn’t think his psychosis happens because of his Asperger’s.
SHOW TEXT VERSION
PRINT TRANSCRIPT
That would have been even sort of..
All my life. I mean, as a child, as a child, but particularly more so as a teenager.
Would that be associated with the Asperger's anyway or I don't know much about Asperger's or not really.
No, no. But I suppose I've always been, I've always been a kind of high risk factor for psychosis and things like that. For what little I know of it. I knew one or two things about it before I had it. But for like, you know, things like kind of racing thoughts and stuff like that. And quite stuff like that.
A few people talked about physical health experiences. Sometimes physical health difficulties could be linked to stress and anxiety. Becky and Peter described having “crippling pain” in their stomachs which they felt was stress related. Ruby had been diagnosed with joint hyper mobility syndrome and suspected Ehlers-Danlos syndrome. This means she is more likely to become anxious, because hyper mobility syndrome increases the body’s production of adrenaline.
Physical health problems that needed major medical interventions could also add to stress and trauma.
Copyright © 2024 University of Oxford. All rights reserved.