Psychosis (young people)
Receiving a diagnosis and finding out more
Psychosis describes a set of “symptoms” that can lead on to different diagnoses. A diagnosis is given when a doctor identifies particular “symptoms” that meet the description of a recognised illness. Recognised illnesses are listed in the International Classification of Diseases or ICD (a comprehensive list used globally to define types of illness). A few of the people who spoke to us had received mental health diagnoses including:
- Schizophrenia
- Paranoid schizophrenia
- Bipolar Affective Disorder (bipolar)
Many we spoke to were not given any of these diagnoses but were told that they had experienced psychotic symptoms.
A few experienced psychosis in the context of other diagnoses such as depression, post- traumatic stress disorder, Asperger’s Syndrome, ADHD or Borderline Personality Disorder (BPD) (See Psychosis and other physical and mental health experiences].
So at what point did you kind of get, did someone give you an actual diagnosis around the psychosis separately at some point?
No, they, it is in the criteria for borderline personality disorder. It's just not really one of the parts that's talked about. I mean, I attended a year's worth of DBT with up to 20 other people during that time and none of them had the psychosis element of BPD, it's, it's really not talked about. Yeah, I mean it's in there but it's, they kind of said borderline personality disorder with psychotic features. They kind of, they mention it in that, because it's not that common. But, I think the way it's slightly different is that it, it tends to be from experiences rather than like some people's psychosis is a bit more random like it can be affected by other things that they've experienced. But they might see a pink elephant. I mean, it's quite unlikely that I will see the pink elephant. But like yeah, it could be, it could be anything. Whereas mine tends to be on like it doesn't feel it at the time, but in hindsight when I am not in that situation so intensely, it tends to be something trauma related.
Treatment before diagnosis
Ruby had a diagnosis of BPD and explains that while psychosis is an element of that, it isn’t very often talked about.
Ruby had a diagnosis of BPD and explains that while psychosis is an element of that, it isn’t very often talked about.
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No, they, it is in the criteria for borderline personality disorder. It's just not really one of the parts that's talked about. I mean, I attended a year's worth of DBT with up to 20 other people during that time and none of them had the psychosis element of BPD, it's, it's really not talked about. Yeah, I mean it's in there but it's, they kind of said borderline personality disorder with psychotic features. They kind of, they mention it in that, because it's not that common. But, I think the way it's slightly different is that it, it tends to be from experiences rather than like some people's psychosis is a bit more random like it can be affected by other things that they've experienced. But they might see a pink elephant. I mean, it's quite unlikely that I will see the pink elephant. But like yeah, it could be, it could be anything. Whereas mine tends to be on like it doesn't feel it at the time, but in hindsight when I am not in that situation so intensely, it tends to be something trauma related.
In the early stages of their first experience of psychosis some people received treatment in hospital but others were provided with help at school or college, through CAMHS, or from their GP. Initial assessments can take some time (e.g. Sam’s took 6 months) and during this time people didn’t always receive a clear medical explanation for their experiences. The practice seemed to vary for each person from being given no information, to being offered a variety of different medical explanations. When Sameeha was taken to hospital under the Mental Health Act (“sectioned”) she says: “no-one told me that I was going through psychosis. I literally was just thrown in, sectioned and they didn't say anything”. It was when she was discharged from hospital and felt recovered that she was given more information. Joe was seen by lots of people initially and received “nine different answers from seven different people in two weeks” about his psychotic experience.
Do you remember the first time somebody actually mentioned - a medical person mentioned - the word 'psychosis'? And what that was like?
The first time they mentioned it was when I saw community mental health in autumn. But I think before then, when I'd been to the crisis team and they'd started talking about voices, and then they'd put me on antipsychotic medication, I got home, obviously googled the medication they'd given me, and thought 'oh, an antipsychotic, like what do they think's wrong with me?' And then looked up psychosis on I think like the Mind web page. And started realising that actually I had most of that. So I think probably would have been better if I'd had a doctor sit down with me and say, "We think you've got symptoms like this, and therefore we're medicating you like this." But instead I kind of just found it out at home.
And probably freaked out quite a lot about it. And then, and then like a while later after that, before I was even assigned to the psychosis team and it was just kind of question mark over whether I had it or not.
Early medical assessment
Lucy was given anti-psychotic medication by her crisis team when she had delusions after a head injury. She only realised she was being treated for psychosis when she “looked up” the medication she had been given.
Lucy was given anti-psychotic medication by her crisis team when she had delusions after a head injury. She only realised she was being treated for psychosis when she “looked up” the medication she had been given.
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The first time they mentioned it was when I saw community mental health in autumn. But I think before then, when I'd been to the crisis team and they'd started talking about voices, and then they'd put me on antipsychotic medication, I got home, obviously googled the medication they'd given me, and thought 'oh, an antipsychotic, like what do they think's wrong with me?' And then looked up psychosis on I think like the Mind web page. And started realising that actually I had most of that. So I think probably would have been better if I'd had a doctor sit down with me and say, "We think you've got symptoms like this, and therefore we're medicating you like this." But instead I kind of just found it out at home.
And probably freaked out quite a lot about it. And then, and then like a while later after that, before I was even assigned to the psychosis team and it was just kind of question mark over whether I had it or not.
Depending on where people went to get help after their first experience medical assessments tended to be carried out by a psychiatrist at Child and Adolescent Mental Health Services (CAMHS), Community Mental Health Teams (CMHT), Early Intervention Service (EIS), or in hospital (including A&E). Assessments can be carried out by any experienced mental health practitioner which can typically include Community Psychiatric Nurses, Social Workers, Psychologists, Occupational Therapists and Psychiatrists.
Many mental health professionals, including EIS teams, do not use diagnostic labels, preferring to use the term ‘psychosis’ to describe the illness. This is because giving a diagnosis of schizophrenia, in particular, is considered to be misleading, as it is associated in many people’s minds with life long illness, whereas the reality is that most people will get better. This can, however, create confusion when, for example, the professional making the assessment is required to enter a “diagnostic code” on the person’s notes. Some people felt that their medical team had made a diagnosis early on but weren’t telling them.
Well one of my first admissions they wrote, they had on a piece of paper, basically, I was on one to one with a staff member, which means they had to stay with you all the time. And on their piece of paper, it had a tick box next to schizophrenia and it was ticked. So I was like, you know, oh, that's what I have. And then, and then, I told my dad I was just like they said I have schizophrenia. And then, and you know, my dad asked and there was this like, no, no, no, she's making that up. And it was, so it, but then, I asked someone else and then they said, yeah, yeah, that's what we think. But then they didn't make up their mind so I was just kind of left thinking, I don't know what's wrong with me. And then I went to a different hospital they said I have borderline personality disorder. And then, gradually, kind of extra diagnosis just kind of added on like recurring depression, social anxiety, post traumatic distress disorder, that sort of thing.
And was that during the inpatient sort of times when you were actually in hospital that you got different diagnosis added on.
Mostly. It was mostly while I was in hospital, but also when I was a day patient with with a different service, yeah.
I found it quite frustrating, because I'd quite like to be able to just label it, and go 'right, that's what I've been experiencing'. And to say to other people, 'this is what I have', and then they can always research it or try to be a bit more understanding of things. But my psychiatrist has said that he just doesn't think that diagnoses are worth much, that we don't really know enough about mental health and the causes and the outcomes to be able to say 'that's what this is'. And they've said that even if they gave me a diagnosis, you know, within six months it could change and I'd be all angry at what they'd given me, when it might not have been right, and. But it's kind of an ongoing battle with them. Because I keep saying every single meeting, "I would really rather know." And I'm sure they have ideas, but they just don't tell me. Because I've got a friend with the same team, and they had a diagnosis for her but they didn't tell her. And then she phoned up the crisis team who'd got access to all the paperwork, and they accidentally let it slip to her what her diagnosis was. Which was much, much worse than if they'd just said in the first place, "We think you might have this." And I think at one point I thought I saw in my GP's notes they'd said schizophrenia.
And I don't know if that was true or not, because I just kind of saw it on the screen pop up, and I was talking about other things at the time. But for, for quite a long time I was angry at the team because I thought they'd written to my doctor and said 'we think she has this', but they weren't being upfront with me about it. And they'd kind of mentioned it in passing, like 'well, we could tell you it's that, but we don't actually know, and it wouldn't make any difference anyway if we told you that'. But, yeah, I've always felt a bit like they're being secretive and not, not giving me the whole story with diagnosis.
CAMHS see many young people who experience hallucinations at a time in their lives when they are undergoing high levels of emotional distress and some people, like Andrew X felt that “in CAMHS they don’t like to diagnose”. Early Intervention Services (EIS) also tend not to diagnose early on as it can take time before it is clear whether a person’s experiences will develop into a diagnosable (ICD) condition.
When she was in hospital Nikki saw that someone had ticked a box marked “schizophrenia” on her form. She received conflicting advice about whether this was her diagnosis.
When she was in hospital Nikki saw that someone had ticked a box marked “schizophrenia” on her form. She received conflicting advice about whether this was her diagnosis.
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And was that during the inpatient sort of times when you were actually in hospital that you got different diagnosis added on.
Mostly. It was mostly while I was in hospital, but also when I was a day patient with with a different service, yeah.
Lucy thinks the medical team already have a diagnosis for her and haven’t told her. Her psychiatrist told her a diagnosis is not worth much and can change.
Lucy thinks the medical team already have a diagnosis for her and haven’t told her. Her psychiatrist told her a diagnosis is not worth much and can change.
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And I don't know if that was true or not, because I just kind of saw it on the screen pop up, and I was talking about other things at the time. But for, for quite a long time I was angry at the team because I thought they'd written to my doctor and said 'we think she has this', but they weren't being upfront with me about it. And they'd kind of mentioned it in passing, like 'well, we could tell you it's that, but we don't actually know, and it wouldn't make any difference anyway if we told you that'. But, yeah, I've always felt a bit like they're being secretive and not, not giving me the whole story with diagnosis.
Many people felt that being told that they had had a psychotic experience was something that needed to be handled with care because they didn’t realise that what they were experiencing wasn’t “real” or that others didn’t have those experiences. Nikki saw a school counsellor and drew a picture of herself with speech bubbles around it to represent her voices. When the counsellor said she was “hearing voices” it was the first time she realised other people didn’t hear them. Many had little understanding of what “psychosis” was and hearing the word used to describe their experience could raise a lot of questions about what that might mean for their future.
CAMHS psychiatrists have said it's leaning to, all she said was, ''It's leaning towards psychosis.'' But she wasn't entirely sure until basically the doctors all sort of said, I said, you know, ''CAMHS have sort of said they are not sure.'' I said, ''Well hang on a bit”, she said “I'm definitely sure. You know, and you need to go to that other service”. Because she said, ''I know full well CAMHS, A\ they stop when you're 18. And B\, they don't cater for it.'' So—
And what was that like to hear that?
I felt a bit like, like something was like seriously wrong with me. Like, the way it was put. I felt like a bit well, I'm broken, basically, am I? And like something was like seriously wrong with me and like—
Because of the way she said it?
No, it was just the way it was just bluntly told to me like it was just, I just felt like right, okay. And I basically said, ''Oh thanks.'' And basically got up and walked out. But and I said, ''I need to walk around sort of the little courtyard bit outside of A&E just to get some air, 'cause I needed to think.'' But and came back in and saw her and she was just like, you know, she explained it a bit more to me and why she'd made that decision and she said, ''She can actually make the decision because she's the head of the psychiatrist at the hospital.'' So she can actually make that decision on the referral to the EIS. But, yeah, I just felt like great- you know, that's ‘it’. Everything just felt like everything ‘stopped’ like that's my college gone. I literally said to her, that's my college gone out the window any sort of education that I wanna do has gone out the window. My social life basically gone out the window because I can't concentrate and have a conversation with anyone, because I'm constantly turning round. I walk down the street on my own and I'm constantly turning round thinking someone's behind me. And I get really paranoid as well when I'm on my own and everyone has gone to bed at night. I get really paranoid that, you know, something's gonna appear in the mirror or something's gonna be outside the window, tapping on the window. Basically, it's like I just felt like I was like that's it, that's my life now. And then she said, ''Oh, they can, they can control it with medication.'' So I thought, Mmm, well that’s fine, you know. And I thought, ah okay, fine.
I think one of the healthcare people suggested voices. And then I think I just kind of latched onto that, like 'yeah, it isn't me, it's this voice - it might be inside my head, but it's not a voice from me'.
Okay. And how did that change things? Or did that make an impact?
I think it made it worse for me, in a way. Because like they kind of say, you know, "This is just psychosis, and it's how it works." But I always thought 'well, I understand that it's still be subconscious brain doing it, like it is still me'. And then I'd kind of think 'well if my subconscious is trying to get me to do awful things to myself, that's kind of worse, like that's not even - it's not even a thought I can control, that's just my deep down what I want to do to myself, it's just so bad that I can't register that it's me thinking it'. And I think all along I knew that I, that I was the voice. But just didn't really want to kind of think about it that way.
Receiving further diagnosis
Sam was told “bluntly” by a psychiatrist at A&E that she had experienced psychosis. The way it was put made her feel like there was something “seriously wrong” with her, like she was “broken”.
Sam was told “bluntly” by a psychiatrist at A&E that she had experienced psychosis. The way it was put made her feel like there was something “seriously wrong” with her, like she was “broken”.
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And what was that like to hear that?
I felt a bit like, like something was like seriously wrong with me. Like, the way it was put. I felt like a bit well, I'm broken, basically, am I? And like something was like seriously wrong with me and like—
Because of the way she said it?
No, it was just the way it was just bluntly told to me like it was just, I just felt like right, okay. And I basically said, ''Oh thanks.'' And basically got up and walked out. But and I said, ''I need to walk around sort of the little courtyard bit outside of A&E just to get some air, 'cause I needed to think.'' But and came back in and saw her and she was just like, you know, she explained it a bit more to me and why she'd made that decision and she said, ''She can actually make the decision because she's the head of the psychiatrist at the hospital.'' So she can actually make that decision on the referral to the EIS. But, yeah, I just felt like great- you know, that's ‘it’. Everything just felt like everything ‘stopped’ like that's my college gone. I literally said to her, that's my college gone out the window any sort of education that I wanna do has gone out the window. My social life basically gone out the window because I can't concentrate and have a conversation with anyone, because I'm constantly turning round. I walk down the street on my own and I'm constantly turning round thinking someone's behind me. And I get really paranoid as well when I'm on my own and everyone has gone to bed at night. I get really paranoid that, you know, something's gonna appear in the mirror or something's gonna be outside the window, tapping on the window. Basically, it's like I just felt like I was like that's it, that's my life now. And then she said, ''Oh, they can, they can control it with medication.'' So I thought, Mmm, well that’s fine, you know. And I thought, ah okay, fine.
When a healthcare professional suggested to Lucy the “thoughts” she was struggling with were psychotic “voices” from the subconscious part of her brain it made it worse, something harder to control.
When a healthcare professional suggested to Lucy the “thoughts” she was struggling with were psychotic “voices” from the subconscious part of her brain it made it worse, something harder to control.
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Okay. And how did that change things? Or did that make an impact?
I think it made it worse for me, in a way. Because like they kind of say, you know, "This is just psychosis, and it's how it works." But I always thought 'well, I understand that it's still be subconscious brain doing it, like it is still me'. And then I'd kind of think 'well if my subconscious is trying to get me to do awful things to myself, that's kind of worse, like that's not even - it's not even a thought I can control, that's just my deep down what I want to do to myself, it's just so bad that I can't register that it's me thinking it'. And I think all along I knew that I, that I was the voice. But just didn't really want to kind of think about it that way.
How quickly people received a diagnosis depended partly on when they sought help. Dominic, had had psychotic experiences for years before he sought help or received a diagnosis. Where the experience was short or a one-off some people preferred not having a diagnosis or a label put on it. But others who had ongoing psychotic experiences would have preferred to know as soon as possible that there was a medical explanation for what they were experiencing.
I think they have pointedly avoided giving me a label, so I don't try and fulfil that label. Because I think it becomes a sort of self-fulfilling prophecy. I mean, I – obviously it was said “you're having psychosis”, but psychosis is a symptom, not a diagnosis. I think it was honestly about two and a half years into - it's been three years now. It was two and a half years in, that the word 'schizophrenia' was even mentioned. And that was saying like, "There's a woman on YouTube who's done a TED talk who has schizophrenia, it might be helpful to you."
And I think it's probably a good thing that that is the policy, to not say anything. Because I think people - people are fluid, they fill the shape of whatever container they're in.
Okay. So for you, a kind of general discussion around your symptoms, let's say.
Yeah. Yeah.
Rather than giving you a label, was a good thing.
Yeah. I think genuinely a lot better. Because mental illness is so weird and vast and different for everyone anyway, that it can't be helpful to put people in this box with this specific set of labels.
For a long, for a long time, I knew it was schizophrenia. There was no doubt in my mind any more. I've made a post on I don't know if you've ever heard of ‘Read it’?
Oh yeah, yeah.
Yeah, I made a post on the self help part of ‘Read it’ describing what I was going through. And, there's doctors on there and there's actual professional doctors on there. And they said, yeah, we, I agree with you. It is schizophrenia and after that I was telling people I was schizophrenic, 'cause I was, which helped a lot, in a way. 'Cause I was no longer this weirdo with a psychosis label. I was, I was a schizophrenic. For some reason, when it's just psychosis, there is a, I don't wanna say you get taken less seriously. But, I think it's like a third of the population experience mental health. And only a small percent of that actually turns into a mental health condition. A lot of that just becomes- stays psychosis. It lasts for five or six months and then goes away and it can even last for three or four years. But, when it's [indicates speech marks] “just psychosis” it's so much harder to get the help you need as well, because like I say, there's so many other people trying to get out of psychosis. It, it's so hard to just go right, I'm schizophrenic, now I know this, I can start building on something.
When it's psychosis, when it's just a generic term, psychosis is such a big broad term that there's nothing to work off of. It's like you, you are being told to build a shed on a hill that has no foundation at all and you are just left with this big problem. And there's nothing definable about it. And I get why it happens. I understand why the psychosis is a label that is given. But, I think also there needs to be something in place that can help differentiate between somebody going through psychosis and somebody going through actual mental health condition, because the earlier your aware of this, the earlier you can start building on something. The earlier you could actually right, okay, finally I know what it is, let's start looking at other people's stories. Let's start looking at research papers and thesis about schizophrenia and schizo types and different archetypes of schizophrenia and the length it can go to, the severity, the nice side of it, the bad side of it. I was able to learn about it. To actually know what I'm reading is about me. So I think there's a big, big problem with people being labelled as psychosis rather than bipolar or schizophrenia or whatever.
So I've been to hospital a few times for overdoses. And afterwards, when you see the mental health team in hospital, they always say, "What's your diagnosis?" And it frustrates me, because they're with the same team as my psychiatrist. And yet they're all coming, coming from different directions, in that some people put a lot of value on the diagnosis and other people don't. And I just think there should be like an across the board decision on 'do we accept diagnosis, or do we say we have no idea, so that they don't mean anything'. And people in the same team as me will have a diagnosis, and they'll kind of get us altogether at, you know, support groups and things. And some people are there that have been diagnosed, and they go confidently 'I have bipolar'. Whereas I'm a bit kind of in the dark. Like I don't really know what I've got. And they kind of just say "Well you've got psychosis." But I think that's a symptom, not a diagnosis. And I'd feel a little bit more confident if I could say "Well if I have that illness, like there's that much chance of getting better." Because even if they said schizophrenia, actually one in four people with schizophrenia will make a full recovery. But I'd rather know that, and know what kind of you're looking at. And then kind of just process it and deal with it.
Once people had a diagnosis, some “felt better” for knowing. Becky thought the diagnosis helped her parents to better understand what was happening to her. Andrew Z had always been interested in psychology and being diagnosed with psychosis fuelled his interest in working in mental health. Although he hadn’t been to see anyone about the “running commentary” in his head, Peter felt that having a “name” to put to his experiences and knowing they were a “genuine issue” would help him feel more optimistic about the future.
Did someone sit down with you and explain it and say, here's a diagnosis for what you're experiencing?
I think when I was in hospital that sort of came then. That was a clear point where they said, it's a psychosis and you need to be on anti-psychotic medication in order to manage it sort of thing. Whereas they'd sort of skipped around it a little bit in CAMHS.
What was that like being told that when you were in hospital?
It was good, I think. 'Cause I find when I got that diagnosis that it don't know how you'd word it. It was a bit of a relief, I think, because it gave me a reason as to why it was happening. Because beforehand I just thought I was just going a bit mad and it wasn't really happening or it was my fault like it didn't have a reason to be happening, medically.
Did you know what psychosis meant?
No. I did a lot of research on it.
Being diagnosed with a mental health condition could also feel quite daunting. Being told you have schizophrenia or bipolar disorder, for example, could feel “heavy” and have real consequences.
One of the worst symptoms is my rage. I get images of hurting people way too often. But it's not just hurting them, it's murdering them. It's torturing and I can look at a random person walking by and my mind will flip from that person's face to that person's face in the torture chair and me really hurting them and that sort of thing. And I also get similar, along that same line these bursts of just fury where I, everything inside of me wants to punch the person in front of me. And those are the ones that scare me the most. Those are the ones that affect me the most. It's not the voices telling me I'm a worthless piece of shit all day. I can deal with that. I handle that. It's when I'm just sat in town, with a friend and all of a sudden I just wanna cave their face in. I don't, I don't know why. I don't know that came from. But that's the one that really affects me. That's the one that keeps me indoors, sometimes.
Is there a kind of build up to it. Do you know what's happening.
No, no, I, it, there is warnings signs. But they're just the same warning signs I get on a day to day basis where my voices don’t want to leave the house. My voices make me, if I—every time I, every time I leave the house, I'll get images of what could happen. The voices say, voices say, if you leave the house this is gonna happen. And if this happens then this is gonna go wrong and your whole life's gonna end. And it happens every single time. And they're the same warning signs for when I'm gonna be having those angry days. So I can't, I don't let them. I could let them keep me indoors and hide away forever. But I don't, I—for a very long time, don't get me wrong. For three years after I was diagnosed, I didn't leave the house because I was just terrified of hurting people. I'm a lovely person. I don't like to hurt, I like to help people. I don't like hurting people. That was the old me, you know. And… every time I left the house I was convinced I was gonna kill someone that day or I was convinced that was the day that I was gonna lose control and really, really kill someone and it crippled me for three years where I used gaming as a big coping mechanism.
It can be difficult for health professionals to provide a single diagnosis. Psychiatrists couldn’t pinpoint a specific diagnosis for Tariq, but said that he was experiencing symptoms of manic depression and schizophrenia. For some people receiving a diagnosis felt arbitrary: Andrew X describes professionals looking at him and deciding “we’ll whack him with this”. A few people said the diagnosis they had received didn’t seem right.
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.
Finding out more
It was two years before the word ‘schizophrenia’ was mentioned to Joe and he thinks that that was right for him. He thinks labels can be a “self-fulfilling prophecy”.
It was two years before the word ‘schizophrenia’ was mentioned to Joe and he thinks that that was right for him. He thinks labels can be a “self-fulfilling prophecy”.
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And I think it's probably a good thing that that is the policy, to not say anything. Because I think people - people are fluid, they fill the shape of whatever container they're in.
Okay. So for you, a kind of general discussion around your symptoms, let's say.
Yeah. Yeah.
Rather than giving you a label, was a good thing.
Yeah. I think genuinely a lot better. Because mental illness is so weird and vast and different for everyone anyway, that it can't be helpful to put people in this box with this specific set of labels.
Dominic would have liked to have had a full diagnosis earlier on and thinks being told you have experienced “psychosis” makes it harder to get help. However, he understands why doctors didn’t want to give him a label initially.
Dominic would have liked to have had a full diagnosis earlier on and thinks being told you have experienced “psychosis” makes it harder to get help. However, he understands why doctors didn’t want to give him a label initially.
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Oh yeah, yeah.
Yeah, I made a post on the self help part of ‘Read it’ describing what I was going through. And, there's doctors on there and there's actual professional doctors on there. And they said, yeah, we, I agree with you. It is schizophrenia and after that I was telling people I was schizophrenic, 'cause I was, which helped a lot, in a way. 'Cause I was no longer this weirdo with a psychosis label. I was, I was a schizophrenic. For some reason, when it's just psychosis, there is a, I don't wanna say you get taken less seriously. But, I think it's like a third of the population experience mental health. And only a small percent of that actually turns into a mental health condition. A lot of that just becomes- stays psychosis. It lasts for five or six months and then goes away and it can even last for three or four years. But, when it's [indicates speech marks] “just psychosis” it's so much harder to get the help you need as well, because like I say, there's so many other people trying to get out of psychosis. It, it's so hard to just go right, I'm schizophrenic, now I know this, I can start building on something.
When it's psychosis, when it's just a generic term, psychosis is such a big broad term that there's nothing to work off of. It's like you, you are being told to build a shed on a hill that has no foundation at all and you are just left with this big problem. And there's nothing definable about it. And I get why it happens. I understand why the psychosis is a label that is given. But, I think also there needs to be something in place that can help differentiate between somebody going through psychosis and somebody going through actual mental health condition, because the earlier your aware of this, the earlier you can start building on something. The earlier you could actually right, okay, finally I know what it is, let's start looking at other people's stories. Let's start looking at research papers and thesis about schizophrenia and schizo types and different archetypes of schizophrenia and the length it can go to, the severity, the nice side of it, the bad side of it. I was able to learn about it. To actually know what I'm reading is about me. So I think there's a big, big problem with people being labelled as psychosis rather than bipolar or schizophrenia or whatever.
Lucy hasn’t received a diagnosis in the year since her first experience, while other young people she knows have. She feels a diagnosis would help her to feel more confident, allow her to know what she’s dealing with and what her chances of recovery are.
Lucy hasn’t received a diagnosis in the year since her first experience, while other young people she knows have. She feels a diagnosis would help her to feel more confident, allow her to know what she’s dealing with and what her chances of recovery are.
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Hannah felt it was “a bit of a relief” to get a formal diagnosis.
Hannah felt it was “a bit of a relief” to get a formal diagnosis.
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I think when I was in hospital that sort of came then. That was a clear point where they said, it's a psychosis and you need to be on anti-psychotic medication in order to manage it sort of thing. Whereas they'd sort of skipped around it a little bit in CAMHS.
What was that like being told that when you were in hospital?
It was good, I think. 'Cause I find when I got that diagnosis that it don't know how you'd word it. It was a bit of a relief, I think, because it gave me a reason as to why it was happening. Because beforehand I just thought I was just going a bit mad and it wasn't really happening or it was my fault like it didn't have a reason to be happening, medically.
Did you know what psychosis meant?
No. I did a lot of research on it.
Dominic had visions of hurting people and heard commanding voices. He didn’t leave the house for three years after his diagnosis because he was afraid he might hurt people.
Dominic had visions of hurting people and heard commanding voices. He didn’t leave the house for three years after his diagnosis because he was afraid he might hurt people.
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Is there a kind of build up to it. Do you know what's happening.
No, no, I, it, there is warnings signs. But they're just the same warning signs I get on a day to day basis where my voices don’t want to leave the house. My voices make me, if I—every time I, every time I leave the house, I'll get images of what could happen. The voices say, voices say, if you leave the house this is gonna happen. And if this happens then this is gonna go wrong and your whole life's gonna end. And it happens every single time. And they're the same warning signs for when I'm gonna be having those angry days. So I can't, I don't let them. I could let them keep me indoors and hide away forever. But I don't, I—for a very long time, don't get me wrong. For three years after I was diagnosed, I didn't leave the house because I was just terrified of hurting people. I'm a lovely person. I don't like to hurt, I like to help people. I don't like hurting people. That was the old me, you know. And… every time I left the house I was convinced I was gonna kill someone that day or I was convinced that was the day that I was gonna lose control and really, really kill someone and it crippled me for three years where I used gaming as a big coping mechanism.
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.
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A few people self-diagnosed before, after, or in the absence of a medical assessment. Some used the internet to find out more, or had heard about psychosis from other people.
Well, two things really. I suppose firstly I was doing - they asked us to do a dissertation which was, my masters was in social research. So you can research any area of society as long as you can relate it to something sociological.
Right.
So I started to think - I’d already had thoughts that I could do something mental health related. Something based on therapy, and mine happened to be on CBT for people who’d had various different issues. And they would - I would interview them, and they would talk about various different things. So they wouldn’t, often they wouldn’t have just had CBT, but they’d have had other things as well like DBT, or they might have had counselling therapy, or taken medication. And they would say CBT is good for this, but it’s not good for something else which I’d had. And I think one or two of them had even mentioned sort of having paranoia, and having psychosis, and having thoughts where CBT wouldn’t be. So I was starting to think ‘oh actually, maybe I’ve got something similar’. Because what they were talking about was very similar to what I had been going through.
Right. So you identified with their description of the sort of paranoid thoughts?
Yeah. I remember one person in particular had mentioned having paranoia and sort of. I remember thinking - you know, I didn’t really think. Maybe I should have done, but I wasn’t really thinking paranoia was something that you would necessarily relate to your mental health. Obviously it seems quite, like common sense almost, to relate it to something with thoughts. But I was kind of, before that I was probably thinking that paranoia is just something people get. And then, you know maybe I had it a little bit more extreme than other people. That maybe it was just something you go through, with anxiety. So - I think that sort of influenced me to try and seek out something about it. And then when I was - After university had ended, or around about that same time I started doing volunteering with people.
Okay.
And you meet - I met like eighty-odd other people. And there’s a lot of other people who have had very similar experiences. And at this kind of point, I was sort of thinking - I was self-diagnosing with quite a few different kind of things. So I remember just basically looking online, because I’d always done that anyway, and several years ago I’d looked sort of online and found out about things like not just depression but also other issues, which still are still - people are a bit uncertain around. Even medical professionals. So there’s kind of like de-personalisation, and things like that. And I’d started to, started to think more about kind of depression at the extreme, more extreme end. So like bipolar disorder and maybe whether it was something, maybe I’d got one of those type of issues. Like something you can kind of put a name to almost, rather than just calling it depression. And then I came across sort of, I thought well I wonder if kind of like, people have had experiences of having thoughts running through their head constantly, and finding it difficult to get rid of them. And sort of having paranoia and all these kind of things. And that’s when I just started to search online, really. And found - I think it was just the NHS website saying this is what psychosis- well it was - it got me onto the page of psychosis, where it was talking about - because it had been talking about delusions and hallucinations, hearing voices, and. Yeah, it got me onto the page of psychosis, when I was thinking - kind of looking through it and thinking ‘well I haven’t got that necessarily, but this seems very similar, or exactly what I’ve got'.
For some, being given the diagnosis prompted them to use online searches, blogs and other sites to find out more about what they were experiencing, including:
Peter has not been to see anyone about his experiences but when he heard the stories of others who had experienced paranoia, and other similar experiences to him, he began to self-diagnose.
Peter has not been to see anyone about his experiences but when he heard the stories of others who had experienced paranoia, and other similar experiences to him, he began to self-diagnose.
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Right.
So I started to think - I’d already had thoughts that I could do something mental health related. Something based on therapy, and mine happened to be on CBT for people who’d had various different issues. And they would - I would interview them, and they would talk about various different things. So they wouldn’t, often they wouldn’t have just had CBT, but they’d have had other things as well like DBT, or they might have had counselling therapy, or taken medication. And they would say CBT is good for this, but it’s not good for something else which I’d had. And I think one or two of them had even mentioned sort of having paranoia, and having psychosis, and having thoughts where CBT wouldn’t be. So I was starting to think ‘oh actually, maybe I’ve got something similar’. Because what they were talking about was very similar to what I had been going through.
Right. So you identified with their description of the sort of paranoid thoughts?
Yeah. I remember one person in particular had mentioned having paranoia and sort of. I remember thinking - you know, I didn’t really think. Maybe I should have done, but I wasn’t really thinking paranoia was something that you would necessarily relate to your mental health. Obviously it seems quite, like common sense almost, to relate it to something with thoughts. But I was kind of, before that I was probably thinking that paranoia is just something people get. And then, you know maybe I had it a little bit more extreme than other people. That maybe it was just something you go through, with anxiety. So - I think that sort of influenced me to try and seek out something about it. And then when I was - After university had ended, or around about that same time I started doing volunteering with people.
Okay.
And you meet - I met like eighty-odd other people. And there’s a lot of other people who have had very similar experiences. And at this kind of point, I was sort of thinking - I was self-diagnosing with quite a few different kind of things. So I remember just basically looking online, because I’d always done that anyway, and several years ago I’d looked sort of online and found out about things like not just depression but also other issues, which still are still - people are a bit uncertain around. Even medical professionals. So there’s kind of like de-personalisation, and things like that. And I’d started to, started to think more about kind of depression at the extreme, more extreme end. So like bipolar disorder and maybe whether it was something, maybe I’d got one of those type of issues. Like something you can kind of put a name to almost, rather than just calling it depression. And then I came across sort of, I thought well I wonder if kind of like, people have had experiences of having thoughts running through their head constantly, and finding it difficult to get rid of them. And sort of having paranoia and all these kind of things. And that’s when I just started to search online, really. And found - I think it was just the NHS website saying this is what psychosis- well it was - it got me onto the page of psychosis, where it was talking about - because it had been talking about delusions and hallucinations, hearing voices, and. Yeah, it got me onto the page of psychosis, when I was thinking - kind of looking through it and thinking ‘well I haven’t got that necessarily, but this seems very similar, or exactly what I’ve got'.
- Google search engine
- Mind website
- “Reddit” self- help pages
- Facebook closed groups and forums
Green Lettuce searched online for causes and treatments of psychosis and found a lot that seemed relevant to what he had experienced, which he found helpful because “I knew that it was something that can happen to other people and it wasn’t just me just going mad”. But finding relevant or helpful information could also be problematic. Tariq found what he felt was inaccurate and flawed information online, and sometimes studies he read about didn’t match his own experience.
Technology could also help in other ways. For example, some people struggled to remember what they had done while they were experiencing psychosis, and it could be useful to go back through messages on their phones to see the sorts of things they had been saying to friends during their psychotic experience.
You can read more about using online support here.
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