This section is about the first time people noticed they were experiencing something that seemed ‘out of the ordinary’. The people we interviewed had their first experience of psychosis between the ages of 14 and 21. Although some people had unusual experiences before, many described their first “real” experience of psychosis as one which marked a turning point for them in their lives. Some, like Nikki, had had unusual experiences during early childhood while for others, like Lucy and Sameeha, the first experience of psychosis had happened very recently.
It could be hard to pinpoint the very first experience, and memories could be “blurry”. Green Lettuce doesn’t recall a specific time he first heard a voice or started thinking people were watching him and talking about him, and when he was younger didn’t understand that it wasn’t ‘real’. But others could remember an exact date, or the moment when they first experienced something unusual. This could be hearing a voice or seeing an image that no one else heard or saw, or behaving in a way that was unusual for them.
Luke remembers “a hundred percent” of his first experience. He was two weeks into his first job in the city when he began to experience delusions.
Luke remembers “a hundred percent” of his first experience. He was two weeks into his first job in the city when he began to experience delusions.
Age at interview: 21
Sex: Male
Age at diagnosis: 19
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I remember - remember a hundred percent of it. I mean, it started with a sort of, thinking people are watching me. You know, you get very wary. But then, then you start to think you've got the biggest idea in the world. Which is ridi- which – you can't be talked out of your idea. And you think you're going to - you think you're Steve Jobs. You think you're going to bring out the world's next best revolutionary thing.
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 company]. 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. It's a seclusion suite within a high security mental health ward. So you can imagine the state I was in, to be put there. Yeah, it was - it was quite scary. I mean, you get this - but also, you get a sense of power, you get this euphoria. You know? In terms of the scale of how high you feel, and how - you know. You feel omnipotent. Not just that you feel that you're god, you feel that you're powerful. And you see things that other people don't see. Yeah, and also it all happened so quick. And I've never really thought that can be an intervention into psychosis. I don't think there's a way of stopping it, I think if you - To me, it feels like you become possessed. And, once it happens it's going to happen, you're going to end up in a psychiatric ward. You're going to be brought down by medication. You're going to get released. You're naturally going to come into a depression, from being so high. And then everything sort of gets back to normal. It’s, to me it seems it's completely uncontrollable.
Life at the time of the first experience of psychosis
Although the first experience of psychosis could be totally out of the blue, many of the people who spoke to us described a period of high stress around this time. A few people were struggling at school, college or university or were working in a high-pressured job. People also described having very low mood or feeling depressed and suicidal, or were self-harming. Some had been experiencing depression for some time before their experience of psychosis.
Sameeha was in her third year at university and a number of things were making her highly stressed. She lost touch with reality.
Sameeha was in her third year at university and a number of things were making her highly stressed. She lost touch with reality.
Age at interview: 22
Sex: Female
Age at diagnosis: 21
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It was my third year. I was just beginning my third year. And it was during the end, towards, it was last September and my student loan had been a bit late as well. We'd had some problems, the landlord as well. Just a few things I had to leave my job because there was some complications there and I was looking for work. And I think during this time period like, I'm myself quite confident human being, so I don't really, if, if things are going wayward, I just go with the flow like you can't really help things, kinda thing. But I would say that period was one of stress one of high stress levels, even though I wasn’t willing to accept it, which is why I would say where the psychosis came from. So during that time period and I would say I was getting stressed. And it was a, a couple of weeks I would say there was a lead up period to it. And it was just regarding that time you lose kind of perception of time. There's a whole lot less awareness of everything that's going on, you kind of just like lose yourself. And eventually in the, the climax of it kinda thing. You are, you're just completely out of touch with reality and that what's happened to me, mid way I think it was half way through December. And yeah, I'd literally just left the house. I didn't know I was doing it. Walked outside, went to random places, spoke to random people and knocked on random doors. I thought loads of like delusional thoughts. Loads of, there was loads of paranoia. Couldn't trust anyone. Eventually, when I got to the hospital I felt like even like the tests they wanted to do to me it felt very invasive. I didn't like it at all. Nothing ever was comfortable during that kind of time period. And, yeah, I'd say regarding my experiences my experience with psychosis it was just like a, a total loss of touch with reality, like. And it lasted for about two weeks until I eventually just came back to myself. And it was like it ended literally right before the new year.
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.
Age at interview: 18
Sex: Female
Age at diagnosis: 17
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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.
Some young people described not eating properly or not sleeping well around the time of their first experience and a few were regularly using drugs and alcohol. There could be a sense that something was happening before the psychotic event or on reflection people could identify something that changed in them. Looking back on it now, Becky says a year before her first psychotic experience when she found out her boyfriend had cheated on her she became a different person: “almost like a switch in my head”.
Sameeha was aware “something was coming” and was going through a “transformative period” rethinking what she wanted from her life.
Sameeha was aware “something was coming” and was going through a “transformative period” rethinking what she wanted from her life.
Age at interview: 22
Sex: Female
Age at diagnosis: 21
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I think during the time period it was like I was, I was aware that like something is coming kind of thing. I could feel it. There's, there's like there's something. I was like, I was not satisfied with the way things were during that time period, I had to, I was always, I was also made aware that I didn't really want to do law. So I was like, oh, I, even though my whole life I've been working up to this point and I mean uni, it's my third year now. I just couldn't find the care for it. So it was, it was a very transitional transformation kind of time period. So, for it to happen during that time. It was like, okay, so kind of—
It must have been quite big then. Because you were in your third year.
Yeah, definitely.
There you are, in law, which is sort of fairly, yeah—
Yeah, rigid and structural.
Rigid and structural. And then, you said, it was brought to your attention or somehow—
Yeah. Look at, a month or two I was like travelling back and I was just like, I don't, this isn't what I wanna do for life. I'm aware, I, why did I even choose law. Is it simply because of the money, because it's a good job, 'cause society wants me to work 9-5 every day. And I'm just like oh, I, I don't even know where I stand in life at the moment. I just followed the path that was easier that my parents took pride in for me. And so now, I just, it was, there was a time where I just need to figure out like who I am and it was a shock, because technically I was an adult. Do you know do know what I mean? I was 21. So, I should know everything, technically according to everyone else, I should know how to run my life and what to do things and how to do taxes and council tax and everything like that. But it, it was a time period like that. I am just gonna go see where everything is. And it eventually it led me to that.
And was there something else going on around you that made you have those kind of, you know, where do I wanna be in life kinda thoughts?
It was, it was just like, I think with everyone, everyone just wants to be comfortable, do you know what I mean? So, it was, uni I was like, out, outcast, do you know what I mean. It was like, you could talk to people, you can have a and b conversation, that's fine. But everything seems a little bit trivial, do you know what I mean? Small talk only gets you so places that I rarely had interesting conversations. Everyone just wanted to drink. Everyone just wanted to go clubbing. Everyone just wanted like the trivial things. I was never about that, not even when I was younger. So I just found, I just found myself like yeah, in that period where I was just yeah, I don't know. I mean, I'm in this place where [sniffs] I've not been before, because all I did was just follow the 'Yellow Brick Road' and eventually I found myself lost, so to speak, kind of thing. So, yeah, I did feel that kind of change come in.
Joseph was working as a chef and pushing himself to achieve more and more. On his last day of work before his first psychotic experience he “kind of knew” he wouldn’t be coming back.
Joseph was working as a chef and pushing himself to achieve more and more. On his last day of work before his first psychotic experience he “kind of knew” he wouldn’t be coming back.
Age at interview: 22
Sex: Male
Age at diagnosis: 21
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In the kitchen, yeah. So I only really had one day handover with this guy. And there was a lot to learn, was just about picking it up. And then, yeah - long days. But then because it's a new section, at home I was then rewriting everything the guy had written, because it was all in quite poor handwriting. So I was writing it up again. Reassuring myself. So, little sleep, little food. And then - so, that was for about a week. And then by the Friday I'd gone to work early. Just to make sure I was set. And then I realised I'd left my phone at home. So, ran home [laugh]. And it's about half an hour journey. And then came back. Got back just as when everyone was starting. So I wasn't late, because I'd already got there early, but [laugh]. Just - And then, yeah. Did a day's work. And by the end of it, that's when I had - it was just having these really weird realisations. And I wouldn't necessarily say all bad. I remember speaking to a doctor after the episode, and he was saying "It's not unusual before an episode, like some artists notice they're more creative prior to." So it was kind of - I kind of felt - yeah, I was having all these weird revelations and that. And a lot of them delusions, maybe some of them were, were quite good - I don't really - can't remember. I don't think anyone really noticed anything. I can't, it's hard to say.
So at the time, you said that you - you didn't really notice anything out of the ordinary?
No.
That it was - It sounds almost like it was just a progression?
Yeah.
Of getting better and better, and pushing yourself, almost to be better and better and better?
Yeah. I'd say so. And then- but I think maybe in the back of my mind I knew it was too much. Certainly that week. And without ever really explicitly thinking it, I kind of knew that I wouldn't be coming back to work the following week.
Others experienced a traumatic event or injury in their past, or directly before their psychotic experience. Ruby’s father had been abusive during her childhood and she started to hear her father’s voice when she was 19. Becky said her relationship breakup had “brought out the worst” in her and she became aggressive, violent and unlike her usual self. Shortly before his first psychotic experience Joe heard that a cousin, two friends and his favourite teacher had died unexpectedly.
Nikki started hearing voices after a traumatic experience at the age of 14.
Nikki started hearing voices after a traumatic experience at the age of 14.
Age at interview: 19
Sex: Female
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Yeah 'cause when I turned 14, there was a traumatic event and that really shook me up a lot.
Do you want to say what it was?
It's difficult to fit in a box. I had an experience where I was babysitting a neighbour's son and something happened while I was doing that. And, you know, I felt I just basically just felt like I was a wrong person, even though I wasn't. But I didn't understand that at the time. I didn't understand what was going on. —
And that was a starting point for very different sort of experiences to the ones you had before?
Yeah, yeah. When that happened, obviously that happened like I you know, I remember being at school and I was just in like a normal lesson and I was, you know, I heard something and I was just like, the room was silent, I was doing an exam and I kind of was just like, what was that? I was just like looking around and there was no-one there. So I just kind of, kind of tried to pretend it wasn’t there, even though I was terrified. And then, like after school I'd be walking to the bus stop with a friend and like there was some other people around like saying stuff and then I was just like, ''What did you just say?'' And like and they didn't say anything. But I just, I heard stuff. So, that and then from that point on, I just started to gradually hear more and more voices that were really pursecutory and they, you know, they were just tell me like, you know, ''You should hurt yourself. You should kill yourself.'' You're this, you're that, you're disgusting like, why would you do that for? And this person hates you, blah, blah, blah. And, you know, I sometimes I can hear up to twenty or thirty at a time like and it's [laughs] that is difficult to live with, very very difficult to live with, to say the least. It's, it's just, it's very hard to think positive when you've, when you hear all the time that you're a terrible person, that you need to die. It's very very difficult. Yeah, so I started to experience that and then things just kinda went on a downward spiral and it just got to the point where I couldn't keep myself safe any more, so I had to be in hospital a few times.
After suffering two head injuries Lucy started hearing voices and having “weird thoughts and delusions”.
After suffering two head injuries Lucy started hearing voices and having “weird thoughts and delusions”.
Age at interview: 22
Sex: Female
Age at diagnosis: 21
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So in 2012 I had a head injury. And it caused what they call new daily persistent headache, which is essentially like a migraine every day for forever, basically [laugh]. And I think at some point during that my mood got very low, because the headache didn't stop for almost three years. And so I guess I probably had depression then, but didn't really do anything about it, I didn't go to the doctor at all. And then in March 2016 I had another head injury. And then after that I started developing symptoms of psychosis. So like a voice in my head. And then eventually external voices, as well. And hallucinations. And just weird thoughts and delusions, and things.
And that was? When was that, that first experience of the psychosis?
March last year.
Yeah. So, 2016.
Yeah.
So do you remember much about sort of just leading up to that first experience?
I'd been quite stressed. I had a lot of things going on. But I don't - but there wasn't any kind of real warning signs in me, other than the low mood. There was nothing to suggest it was going to happen.
And then what was it that you noticed first?
I tried to crash my car. And didn't, it was fine. But that was quite scary. And then I lost like all concentration, couldn't work. Was just finding it really difficult to function. And then friends started noticing the things I was saying, were a bit kind of odd, and just not really like me. And then it was probably a few weeks before the actual hallucinations started. Probably by June, I guess, they were - it was quite full on.
What was the first experience of psychosis like?
Experiences of psychosis can vary a lot from one person to another and people we spoke to experienced very different things. Some experiences fitted common perceptions of psychosis. Green Lettuce heard voices that were saying “bad things, usually”, and Hannah saw a “figure” that appeared and then disappeared while she was walking her dog. Peter hasn’t seen anyone about his mental health experiences, and isn’t sure if he has experienced psychosis, but said he has noticed his own voice became “more vocal”, like “a running commentary”.
When Barry woke up and saw a red car on his curtains it didn’t bother him. But during the day he passed a car crash involving a red car and thought he had caused the crash.
When Barry woke up and saw a red car on his curtains it didn’t bother him. But during the day he passed a car crash involving a red car and thought he had caused the crash.
Age at interview: 19
Sex: Male
Age at diagnosis: 16
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All of a sudden one morning I woke up, and I saw on the curtains a red cartoon car. It was something silly. It, it didn’t bother me, I knew, I knew that I never had a red cartoon car on my curtain in the first place.
Yeah.
I thought nothing of it, and I met up with a friend. And it was near a shopping centre, and there was like a double roundabout. And we was in a little park nearby, and there was a car accident. And for no reason at all, I was telling my friend, not to call the ambulances because I was just getting paranoid that it was somehow my fault. Even though I was just in the park and there was nothing, I was nothing connected. I think what happened, the reason was, was because it happened to be a red car involved. And I thought it was some sort of final – what’s the movie called? Final, oh
Encounter, or?
No. Base- it was - It just reminded me of one of these horror movies where people getting visions of the future. Of accidents that had bad effects but. Then my mum tried contacting CAMHS. And they put me on the waiting list. Within a week I started not knowing where I was. I’m, I was, I was very stuttery. So I could be like, sort of thing and. And when people was talking to me I just, I would take forever to reply. In the end I don’t know how to explain it. I was just completely all, I was erratic, I was all over the place. I couldn’t sit still. I’d be moving all out, all around. And in the end, my Mum felt I was getting so bad, so she took me to [a specialist unit], I’d say. It was a, it is a service run by CAMHS. And because I had a past record with the autism, my Mum took me there and made me stay and wait in the waiting room, and refused to leave until I was seen by someone.
Joe’s first psychotic experience happened when he heard his grandfather’s voice, criticising him, over his right shoulder.
Joe’s first psychotic experience happened when he heard his grandfather’s voice, criticising him, over his right shoulder.
Age at interview: 23
Sex: Male
Age at diagnosis: 21
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So first time I had anything was the beginning of my second year at university. I was walking back from Sainsbury's, just with shopping. And it was like I was having a sort of bit of a rough time with it anyway. But I just basically had a voice coming over my right shoulder, and it was my grandfather's voice, who was not a great guy. Just saying "Well, I mean, what are you doing?" I found it odd that I have to use his voice to actually say his words, but just do. So it's like "So, what are you doing? Why are you bothering? You're, you’re just going to end up hurting people. You should just - you should jump in front of that car. That's what you should do." Yeah, that was the first thing [sigh]. Tracking back a bit from there, I think the reason why I was having problems was over that summer I'd lost quite a lot of people. So my cousin had died, in a fall. My - one of my friends died of lung cancer. One of my friends died of an infection from another health problem. And one of my favourite teachers died of pancreatic cancer. And I think just having them all, altogether in, within the space of about three months, just blew my head off a bit.
Hannah thinks it’s a misconception that everyone who experiences psychosis hears voices. She describes the first time she saw a “visions”.
Hannah thinks it’s a misconception that everyone who experiences psychosis hears voices. She describes the first time she saw a “visions”.
Age at interview: 19
Sex: Female
Age at diagnosis: 15
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I think it can be a bit of a misconception that someone with psychosis hears voices. That I never have heard, heard voices. I just see things that aren't there. So I think that's useful to know if you are someone who is experiencing it and you don't have voices, don’t hear voices. That you can still be experiencing a psychosis.
And tell me a little bit about your experiences? Is it something that's always been there?
No. I think it started when I was about 14. So that's five years. It wasn't a problem before that. I basically just started seeing like images that were- that other people couldn't see. And it did affect me quite badly.
What were you doing at the time? What do you remember about that time, so was there a sort of first time it happened or a first time that you realised that other people couldn't see those same images?
Yeah, when I think the first time it happened, I was walking my dogs. And I saw something and I knew that it wasn't real, because it I looked at this figure and it was there and then it wasn't there and I hadn't experienced that before. So it was like something from a film. Like how- like when people were dreaming or remembering something then it flashes and it's gone, sort of like that.
Okay. And how was it, but obviously it sounds like it was different to a memory although you talk about it as like a memory, because it looked like a visual thing.
Yeah. That's how I, I relate it so people can understand. So like in films if it's in a—it comes up as somebody’s memory. That's what it looks like and it just fits goes in there sort of thing.
But others’ experiences could be more difficult to pin down.
When Andrew Z had his first experience of psychosis he had some understanding of what psychosis was and didn’t think his experience fitted that.
When Andrew Z had his first experience of psychosis he had some understanding of what psychosis was and didn’t think his experience fitted that.
Age at interview: 23
Sex: Male
Age at diagnosis: 20
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Well, I had my first psychotic episode when I was 20. I'm 24 in a month. I was kind of more of an A Typical psychotic experience. I knew I was experiencing psychosis. But I it was kind of I had this I was in a play several months beforehand in February. And 'cause I got involved in some acting, 'cause I wanted to broaden my, broaden my horizons and I was interested in doing something with- people linked, and I was remembering stuff like kind of stuff that happened during the play that hadn't actually happened. Quite elaborate, quite odd things that, you know, there weren't defying like the rules of physics or anything. But it was kind of very strange happenings and it was kind of there was this massive pull factor telling me it was all real. At the same time, I was like, this is a bit unrealistic for me to have forgotten something that's elaborate and suddenly remembering it. 'Cause I was interested in psychology, I kind of knew what psychosis was and so I was thinking I might have experiences of psychosis. But at the same time, I was thinking, this isn't normal psychosis, because I knew that normal psychosis was, hearing voices, auditory visual hallucinations, normally. And it was kind of more memory hallucinations, if you get what I mean. So eventually I ended up going to the doctor and they put me on olanzapine.
Joseph describes eating breakfast just before he collapsed and was taken to hospital. He felt disinhibited and like something in him had changed on a mental and physiological level.
Joseph describes eating breakfast just before he collapsed and was taken to hospital. He felt disinhibited and like something in him had changed on a mental and physiological level.
Age at interview: 22
Sex: Male
Age at diagnosis: 21
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What happened was, it was a bank holiday, that Monday. So, parents had gone back home. My girlfriend had stayed the night. That night, I believe - oh sorry, the night before, there was a party. Or a small gathering in the floor above, where I stayed with my friends. And I'd gone up, just for a little bit, until four in the morning. So, still only had a couple of hours sleep then. So by the then Monday, bank holiday, I was pretty frazzled at that point. And, yeah. It definitely got worse, the symptoms. I sort of went to make breakfast, and given that I'm used to cooking [laugh] quite a lot of food in a short space of time, to a high standard - cooking just eggs and bacon was the hardest meal I'd ever cooked, at that point. I was just - Almost like you're a bit quite drunk. Not being able to focus. So, just - yeah, and it was just not cooked well. Put it on the plate. And then, yeah - walked in, into the bedroom and that, gave it to my girlfriend, we ate it. And then I never usually eat the fat on, on bacon. And then my girlfriend said, "Oh, you should try it." And then - I'd usually say no, but just because the symptoms were coming on stronger, and I'd - you're more in a disinhibited state, and like - also it went with my belief at the time that, something to do with how - I really don't remember, but fat was - yeah, certain carbohydrate, just to give me more energy, I'm not sure exactly. But I just remember having this - like it was because it wasn't cooked properly, it was just this big bit of blubbery fat, and I just downed the whole thing. And it tasted fine. And I couldn't do that now. So, it almost at a physiological level I was changed, not just mentally. Like the actual way I perceived taste had changed.
These early experiences could be very confusing especially when people didn’t understand what was happening or weren’t able to “pinpoint” their emotions. Sameeha remembers screaming but not feeling anything - she could see herself behaving out of character but felt disconnected from it as though she was “watching” herself. While there could be a sense of knowing something was out of the ordinary most people didn’t know what was happening: Becky “hadn’t got a clue what was going on”. Tariq said, “It was like something had taken over me and I didn’t know what it was… I just thought… I must be feeling very sick or something like that”.
But some, especially those who were having delusions, were not aware of what was happening and others chose to ignore it. Joseph thought he could learn Italian in a day, and never thought at the time “this is really bizarre”. Hannah didn’t want to tell anyone about her experiences “I guess if you talk about it, it’s real, and I didn’t want to think it was real and that it was happening”.
Dominic ignored his voices for some time, but then they began telling him to hurt others. He describes a time when he acted on this and felt “broken” afterwards.
Dominic ignored his voices for some time, but then they began telling him to hurt others. He describes a time when he acted on this and felt “broken” afterwards.
Age at interview: 24
Sex: Male
Age at diagnosis: 21
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I started experiencing voices at 16. Didn't do anything about it. Tried to keep living life. Tried to keep moving. And, it got worse. And I started convincing myself that everyone heard voices like it was a normal thing and that if everyone else deals with them, why can't I deal with them. So I kept ignoring them and kept ignoring them and eventually the things they were saying, I started doing. So, for ages, while I was ignoring them they kept asking me to hurt people and do things I didn't wanna do – push that old lady over. And walking past a group of lads to punch one and stuff like that. And I ignored them. And, that worked until it didn't. And, one day, I lost my temper and I was walking through town and I walking past a group of uni kids, I think it was and they laughed and, as I was going passed them. The voices said, that was at you, go, now. And I just turned round and grabbed one and pinned him to the tree that was next to them. I just started shouting in his face, ''Why you laughing at me? Why you fucking laughing at me?'' He was like, ''I wasn't laughing at you, mate. I really wasn't laughing at you and I got so angry with him and his friends were trying to pull me off of him and I'm getting angry at them. And then one of them said, ''He's fucking crazy.'' And that was horrible 'cause I was, I've already met, I've already met that word, that crazy word. I that’s what I was afraid of all those years. I was avoiding it. It was like a crazy word. And when they said that, it broke me out, but it sent me in a weird place. I apologised to the lads and said, ''I'm so sorry. I don't know what that was. I didn't mean it. I'm really sorry.'' I just ran away. I ran to a friend's house at the time and sort of cried and broke down. I still chose to ignore it at this point. I was 19 at this point.
What was the impact of the first experience?
At the time of the first experience young people were often still socialising and studying. Afterwards they could feel awkward about what had happened. Andrew Z felt “a bit embarrassed about the strange messages” he had sent to friends during his psychotic experience. Lucy felt “quite guilty” that she had tried to crash her car while she was driving with her friends during her first psychotic experience. She also remembers saying “horrible” things to people that normally you would never say, and not realising it would upset them. Becky, who felt very angry and could be aggressive and violent, thought afterwards, “I’m a bad person”. The experience could add to existing feelings of low self-esteem, low mood and depression, and leave young people feeling desperate.
Andrew Z, had “buzzy thoughts” and couldn’t concentrate on his studies or when he was talking to his friends.
Andrew Z, had “buzzy thoughts” and couldn’t concentrate on his studies or when he was talking to his friends.
Age at interview: 23
Sex: Male
Age at diagnosis: 20
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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.
Despite a very brief one-off episode of psychosis, Joseph lost his social skills and found ordinary tasks challenging. He was also adjusting to the effect of his medication.
Despite a very brief one-off episode of psychosis, Joseph lost his social skills and found ordinary tasks challenging. He was also adjusting to the effect of his medication.
Age at interview: 22
Sex: Male
Age at diagnosis: 21
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And eventually - I didn't even realise what I'd lost, so quickly. Like social skills got so bad that, overnight, that I, I didn't even realise that I didn't have them. Sorry, that I had them before. And so it was just about rebuilding all of those things. So, now - 2017- quite a bit later, feel in a position where I am stable. And I won't say there's an end goal to recovery, but I certainly feel “recovered” in most senses. And as I say, the episode itself was quite - relatively brief.
So it got to the point at that time where it was calming down. But it was still the shock waves. And so yeah, it's almost like post-traumatic type symptoms then. So, just.
So, how did that - What was that like?
It was very - Made it very difficult to - Like I'd gone from being manic, and extroverted, zero inhibition
Yeah.
And then the flipside of that is you realise what you did, and then you just - you're then having to watch yourself so much more. So, and some people said, "It looked like my brain was just going through treacle." And I just had to - everything I was doing, I was just over-analysing and thinking. Because I was so aware of the crazy stuff I did, that I was just over-thinking about what I was saying. And felt a bit of an alien, because I just couldn't feel I could interact normally with people again, after such an outburst.
So there's a lot of self-awareness
Yeah. From going to being self-aware but in a different away, and a lot of disinhibition, to yeah, the extreme.
Okay. And that sort of continued up until you left hospital, it sounds like.
Yeah. Yeah. So even by the time I'd got back to the family home. I remember trying to change my bed sheets, and - pretty normal task that I'd do quite regularly beforehand - and I just couldn't do it. I got so frustrated that I just punched the sheet, and just hit my hand on the floor. And, I didn't break anything, but it got particularly swollen. And it was just an example of I just suddenly couldn't deal with day to day - certain day to day activities, which you just wouldn't even think about before. And the particular drug I was on gave you a - because it's used to treat Parkinson's, so gave me a tin man type effect. So your hands were very straight.
Andrew X’s experience of psychosis led to severe depression and he felt “destroyed” as a person. He said it seemed as though the foundations of his life had collapsed.
Andrew X’s experience of psychosis led to severe depression and he felt “destroyed” as a person. He said it seemed as though the foundations of his life had collapsed.
Age at interview: 24
Sex: Male
Age at diagnosis: 14
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I think that particular episode where I you know, where I just jumped out the window and then ran, because I thought Satan was gonna come and kill me. That's probably my first real experience. But I'd say the first, the first phenomenon, if you will that I remember in particular, a particularly difficult one. Something I think is called 'Thought Broadcast' and this was, out of everything I experienced out of the voices, out of the self-harm, out of the depression, out of the suicide ideation this was the most difficult to deal with. So I'd be sitting here and I'd be you know, just thinking, as people do and you know their mind is their sanctuary. They should be able to think what they want. But I felt as though people would be able to, that my thoughts would be broadcast to other people. So people sitting in the room with me would be able to read what I was thinking. So let's say, I thought, oh, you know, [friend’s name] has some really terrible shoes. I would feel as though [friend’s name] would be able to hear that. So that's really difficult, because then your thoughts don't become your own. So you're guarded about what you're thinking and you're stopping yourself being able to think. That's horrific. And that's really difficult to sort of manage and particularly when you believe it's true. And then you get paranoid about what people think about what you've been thinking about them. That's, that, that, that, that really destroyed me that did. That was a really difficult experience. And that's probably the most powerful memory from that, you know, the first memories. It took me a while to actually resolve that. Took a lot of counselling or therapy, whatever.
How did that sort of break down and change you as a person, do you think?
In the short term, I think in the short term and to the medium term it destroyed me as a person. It, it took away everything I thought it was and put it in a blender and just made me just this, you know, I didn't become this overnight. But, you know, it sort of the, the epitome of what was going on at the time. I was depressed. I was suicidal. I was hurting myself. I was hearing things. I was, you know, overweight. I felt I was ugly. That, that low point on my life where I felt all these really negative things. You know, I didn't wanna be here anymore. 14 years old and you wanna kill yourself is not really the best of situations to be in. So in the short term it sort of like brought about that collapse, you know, in the entire shaky foundations that was my life at the time just collapsed and fell into a pit of darkness. But, actually it made me, as a person and it made me who I am today. And it made me see the world very differently. It gave me a very unique perspective on the world, because when you go through that trauma at that young age, you become really really mature.
The first experience of psychosis was short lived and a “one-off” for some people, like Sameeha and Joseph and they hadn’t experienced psychosis again. But for most it is something that has continued and which they have to live with and manage. As time passed and people began to come to terms with what had happened they often wondered about what the future would hold.
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