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Psychosis (young people)

Reflecting on and managing hallucinations, paranoia and delusions

Remembering psychotic experiences

Many of the young people we spoke to had had continual psychotic experiences since their early or late teens, while some, like Andrew Z and Lucy, had started having psychotic experiences only relatively recently. Three of the people we spoke to, Sameeha, Becky and Joseph had had a single short period of psychosis in their early twenties. 

Memories of psychotic experiences could be confusing or unclear. Andrew X said, “I struggle to remember things from my psychotic experiences… like my brain has blocked them out deliberately – which I’m cool with”. However, psychotic experiences could also feel so much like reality that some people had vivid memories of them. Joe’s first major hallucination comes back to him regularly as a recurring nightmare. Luke remembers “everything” about his delusions and at the time when he is experiencing them they don’t seem extraordinary. It is only afterwards that he wonders “Why did I think that”?

Memories of psychotic experiences can be upsetting and frightening (see hallucinations, paranoia and delusions). Sometimes people could act erratically and experience big mood swings. Becky described it as ‘like a demon comes out’ when she experienced psychosis. People also described feeling disinhibited; saying or doing things that they usually wouldn’t do or say. Afterwards it could be awkward remembering.
 

Sameeha felt as if she was sitting in her own chest watching herself. It was upsetting to hear afterwards how her actions had affected others.

Sameeha felt as if she was sitting in her own chest watching herself. It was upsetting to hear afterwards how her actions had affected others.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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So when it was at its worst, what did that kind of look like?

At its at its worst was awful. It's, you'd, you have no control of it at all. But your, your, how I would describe it 'cause there was a time period where I was in the hospital. It was the A&E and I just wanted to, I just wanted to go, I was surrounded by people. And I think it was a time period where I was acting—I might have been slamming this hinge thing on the wall. I was like slamming it and counting at the same time. And there was loads of people grabbing me and I was like, no, just let me go, just let me go. And it was very overwhelming. But I remember this like especially in that moment. Even I kept blacking out in and out. That I was like sitting, pretty much in the centre of my chest. Yeah, I was sitting in the centre of my chest kind of watching the whole thing go down kind of thing like I was just like this consciousness just, even I was like, oh my god, I'm screaming like from the top of my lungs, but I don't feel anything. I am just watching it go by. So there was definitely this separation from the ego of which I was Sameeha and it was just me watching this horrible thing go, go by, but there was no judgement of it. It, it was simply what it had to be. There was other periods where I couldn't even communicate, like say, if I wanted to say something, I couldn't even say what I wanted to say. There was a time where I've only speak, I was only speaking in numbers and colours. I was getting my, my, my moods were very irritable, like I could switch from being happy to go lucky depending on the person speaking to me. Yeah I remember during that period my friend as well right before I went. Completely kind of disconnected to reality. My friend had told me after that she had felt very scared, very frightened for her life. And I was just like, ah, that's very upsetting to hear, because obviously when you are in that kind of delusional period, you have no intent of anything at all. So, coming back and hearing what you did during those periods is very difficult, because you don't define yourself by that, but at the end of the day, you did it, so you can do nothing else but take responsibility for it. So, yeah, those are the things that are the most bad. Things like completely out of character, 'cause, for me, burdening people would, I would say it's one of the worst things I'd do. And I was constantly just in people's I, I was, I would talk and just mention nonsense and be so sure of the things I was saying and obviously, coming back to that, it's not pleasant 'cause obviously people can full on witness you not being completely there and it makes them uncomfortable and it makes them obviously they don't know what's going on and they don't understand completely what's going on in your head. So they, they're uncomfortable themselves. So that's difficult as well, working with, kinda thing. 
 

Dominic hears clearly identifiable voices. At one point he heard seven voices. The constant “chit chat” was “intense” and made him angry. The loudest voice would give him commands telling him to hurt others.

Dominic hears clearly identifiable voices. At one point he heard seven voices. The constant “chit chat” was “intense” and made him angry. The loudest voice would give him commands telling him to hurt others.

Age at interview: 24
Sex: Male
Age at diagnosis: 21
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It was one voice and then it became two voices and then it became three and then it became four. And at one point, I had seven voices going on. This was before medication. 

And they were sort of identifiable and separate. 

Different, different tones of voice. I can't pinpoint, 'cause voices are supposed to represent a person you know or a voice you've heard. Sometimes it's your own voice in different tones. Like one of mine is, younger me. He's a very temperamental little twat. One of them is my dad's voice. One of them is my very good friend, [her] voice. And when it was seven, there wasn't any chance to identify them, because it was just constant flow of talking in my head. Do you know, I don't know if you've seen Bruce Almighty. You know he's in the restaurant and he's hearing all that. It's literally, it was like that, constantly over and over again. And I had no breaks. For once, because I wasn't smoking weed at the time. I wasn't doing anything. I wasn't drinking or I wasn't smoking weed. I was just living and it was just constant and it was exhausting to say the least. And it was so intense that it would get me angry, throughout the day while I was working, it would get me angrier and angrier and I'm trying to find a break and trying to have just a few seconds of peace and there was none of it, ever. And, that made me very angry. Made me a very angry person, in general. I didn't, I didn't need any more anger. I wasn't short on anger I had plenty of it. And I was getting increasingly angry. And, then the orders became the loudest voice, so I had all the chit chatter, and all the chit chat, every now and again, ‘Go and hurt that person. Go and put his head on that fucking pavement’ or whatever and it would be very oh, no, very loud and very [moves hands from head to demonstrate angst], you know. 
But some of the young people also described pleasurable memories such as heightened senses, spiritual-like feelings and false memories of “happiness”. A few people related positively to some of their psychotic experiences. For example, Luke mentioned the “high that people with bipolar experience”.
 

Barry experienced a “high” from drinking cold water because his senses were heightened.

Barry experienced a “high” from drinking cold water because his senses were heightened.

Age at interview: 19
Sex: Male
Age at diagnosis: 16
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When I’d wake up in a morning, I - my senses would like wake up, I could still hear [inaudible] what was happening around me, and it would - it took great difficulty to open my eyes. Then I would just be laying on my bed, and I just couldn’t move. And then there I’ve been stuck inside the walls, and I have very access to the outside world [background noise], and I guess my senses was heightened.

Right.

And it sounds a bit silly, because you get people who take drugs and this and that, to get their highs of whatever. But I, because they had a little water dispenser, and it was always really cold, all of a sudden I started drinking the water. And I thought I was getting high. 

Okay.

Off of a cup of water [smiling].

Right.

I’d be drinking it, and I’d be drinking it in a way that the cold water was hitting the back of my throat.

Yeah, yeah.

And because I could, my senses were heightened, I could feel it trickling down the back of my throat.

Right.

I just, I’d just sit there with a cup of water doing it. And, I don’t know why, it was just weird. It was very weird.
 

Joseph remembers tasting avocado while he was recovering in hospital and it being like the first time he’d tried it. He also remembers a sense of euphoria looking out of the hospital windows over the city.

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Joseph remembers tasting avocado while he was recovering in hospital and it being like the first time he’d tried it. He also remembers a sense of euphoria looking out of the hospital windows over the city.

Age at interview: 22
Sex: Male
Age at diagnosis: 21
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Yeah. I didn't eat much at all in the hospital. I had to be fed. I think I wanted to be fed. I'm not sure. But I was spoon-fed everything. And food had a particularly big impact on me, because it's - I'm not sure if other people with psychosis feel this, but it's a sensory overload? So all the senses on high alert. Lights were way too bright. So there's a light at the top. I don't know, it was just the brightest thing I'd ever seen in my life. And I just was shouting at the nurses for them to turn it off. And they were saying they couldn't, blah, blah, blah. And a few months ago, I think I asked my family about that. I said, "Do you remember that light? Was it me, or was it - was it actually that bright?" And they said, "No, it was just a normal light." [Laugh]. So it's kind of sensory overload. 
So, going back to the food. That was sensory overload. And there was - Hospital food is quite similar to the food you were perhaps fed when you were like 5 years old, or something. So, peas and mash. So, I felt as if I was eating everything for the first time again - I was eating, yeah so the peas, it was just - I was just really interested in the taste. And it tasted like - a bit like obviously when you put salt on avocado or something, and it tastes ten times better. But obviously it was just bog-standard hospital food, so it wasn't particularly special. 

So, to go back to your question - I did eat, yeah, better, in the acute ward. Now I enjoyed the food, I didn't have a problem with the hospital food, so. Not sure if it was great, or it if was just me [laugh]. Yeah.

Lovely description, sort of sensory - really heightened –

Yeah.

Heightened senses.

So, that's what I go back to saying about how it wasn't all negative. The - It is kind of a cool experience, to have eaten something that you've eaten loads of, and for it to feel it's the first time again. And - another example is the first time I - So the first day in the hospital. These huge glass windows. And I just looked out on the whole of the city, and that was just - my head dropped. And I got quite a big sense of euphoria, just looking out at the city. And, yeah. I wouldn't want to forget that. There's a lot of stuff I would forget as well, so [laugh].
Managing the impact of hallucinations, delusions and paranoia

People who had experienced psychosis for many years described “ups and downs” with their psychosis and said the psychotic experience itself usually didn’t change over time. However, they had often found ways to manage the psychotic experiences, which could make it easier to cope. Medication or talking therapies had helped reduce the number of psychotic experiences for some people, or made them less upsetting, while others had found self-management techniques that helped them.
 

Joe’s voices make him feel “blasts of emotion”. He uses mindfulness and meditation to make his brain “calm” so that the voices become calmer.

Joe’s voices make him feel “blasts of emotion”. He uses mindfulness and meditation to make his brain “calm” so that the voices become calmer.

Age at interview: 23
Sex: Male
Age at diagnosis: 21
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Almost now I feel that if I get hallucinations and voices, and they say - and they're trying to warn me of stuff, and I just go 'nah, I'm ignoring you, go away', that's probably not going to be that productive either, because they'll get angrier and then I'll get worse stuff. Yeah.

So in terms of sort of managing it day to day now, and drawing on those things that you've learned –

I don't ever get them less frequently. Throughout the whole process, I've never got voices less frequently than I used to. But it depends what they do as to how much it affects my life. And nowadays it might just be - I got, I got - some of them - Well, all of them would sometimes communicate. Not even with words, just with sort of making me feel blasts of emotion. Like seeing, I don’t know, a person walk past the window, and I just got tremendously angry all of a sudden. Because that voice had access to that bit of my brain that could make me feel furious. But nowadays I might get a very brief flash of understanding and emotion but I don't really get that any more. I think because I am calmer about it in general, and they are parts of my brain which is calmer, they themselves are less stressed about - yeah. Well, you say - They, they perceive danger on a sort of heightened scale. So my voices, if they see something that is 2 out of 10 dangerous, would say 6 out of 10 dangerous. If they see something that's 4 out of 10 dangerous, they'd see a 10. But if I'm like a minus 2 anyway, they'd probably only see it as a 2 and it wouldn't be a problem.

So, how do you get your brain to minus 2? [Laugh].

Practice [laugh]. 

Yeah.

Honestly, just - I do a lot of mindfulness and meditation stuff. And actively try and make myself not worry. I think one of the things I've discovered is you, you can't change things. I - Because my job is quite stressful and awful sometimes, but the only way I'm going to ever cope in that job is at four o'clock when I leave, just leave it behind.

Because you can't – If you, if you hold all of the stress you could have at one point with you at any one time, it'll burn you up. You've got to sort of compartmentalise and get it to be - I can deal with it. 
 

Dominic has been seeing images, hearing voices and experiencing other hallucinations since he was 16. He now has a positive “relationship” with his voices, and says “it can be fun”.

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Dominic has been seeing images, hearing voices and experiencing other hallucinations since he was 16. He now has a positive “relationship” with his voices, and says “it can be fun”.

Age at interview: 24
Sex: Male
Age at diagnosis: 21
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I suffer with schizophrenia depression my schizophrenia involves sensory, I get visual, audio smells, senses and it happens constantly, all the time the images can be funny. They can be horrible. They can be as simple as seeing dirt on my shirt that isn't there and obsessing about it when, in this sort of environment or while I'm doing group settings stuff. Start seeing things that aren't there. The voices are fun. They have different impacts day to day. Most of the time, it's negative that comes from them. But sometimes it's also funny and positive and like my thoughts taken in different lights, if you know what I mean. It's like an example was I can be, I've had it before, I've been in a new group setting where I've been with other people with mental health and someone says something and I've I've been a little bit either upset or annoyed by it or something like that. And they can turn that into something more positive, sometimes. It's strange. So a guy once said that, his voices control his life in a serious way and that triggered me a little bit and made me a little bit, ah, what, what do you mean? And then the, my voice has turned round and said, yeah, I'm gonna be the, I'm gonna be the boss now. And I'm like that it's not actually gonna work. So it be, it can be fun, it can be—

They are almost interacting with the outside world. 

Yeah, yeah, yeah. I have a relationship with my voices. Not many people do. Some people just try to avoid them. I did that for a long time where I didn't wanna accept that I had voices and I didn't wanna, I didn't wanna have schizophrenia. I wanted to let make them go away.
People had different ideas about how best to manage voices and hallucinations. Some found simple things worked best. Ruby finds that talking or singing aloud helps reduce her voices because “you can’t experience audible hallucination when you are talking. The brain can’t process both.” Hannah said, “If I see a vision, trying to walk away from it helps”. 

Green Lettuce says its best to try to ignore commanding voices, keep your mind as occupied as possible, and get a “proper routine” in the day and night. But Dominic found that if he ignored his voices, they would get louder and angrier and that what worked best was communicating with them on a daily basis.
 

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

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

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

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

Joe has had multi-sensory hallucinations that involve him hurting others. Even though they only happened in his head he feels he needs to treat them as though they were real and tries to ‘forgive’ himself for what happened during the hallucination.

Joe has had multi-sensory hallucinations that involve him hurting others. Even though they only happened in his head he feels he needs to treat them as though they were real and tries to ‘forgive’ himself for what happened during the hallucination.

Age at interview: 23
Sex: Male
Age at diagnosis: 21
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So essentially what happened was I walked, you know, sort of down the road. Got to the roundabout, walked along by the Tesco’s. Got to the house. And then I remember - I remember not even - I remember it actually happening. Was the - my friend opening the door, and me just somehow having a knife, and killing both of them. And then I remember my grandfather's voice saying "Okay, now. Now, you can go." As if I was a child being told off, "You're going, going to have to watch this, and then you can go." And then I woke up, in the middle of that roundabout, bawling my eyes out.

And then I walked back to the house. Because - Because at that point, I - That had actually happened for me.

Yeah.

I was basically going back to see if I could do anything to help. And then I got to the house, and they both opened the door, and it was completely fine. And my world just kind of melted together. Because it was two completely conflicting, but both completely real things happening in tandem. And, yeah. And, yeah. That was the first time I had a visual hallucination, or one that involved other senses. And that's what I mean about things being - whether you can if things are real. Because both those things, according to my sort of linear perspective on life - both of them happened around the same time. And both were exactly as real as each other. The only difference is, I'm living in a world with the results of one of those. But I could quite easily be living the other world, with the results of the other.

Yeah.

But that's something I sort of took quite a while to come to terms with. And I think it was somehow easier to – it, it was easier to accept that it happened, and try to forgive myself for it, than it was to try and say it didn't happen. Because -

It was easier to forget that happened? Than it was -

It was easier to forgive myself for it happening, even though I know I didn't do it. If that makes sense.

Okay.

Because the - If I denied that it happened, I have to deny every experience I've ever had, because it involved the same information.

If I play by these rules in this world - so like if I pick up that cup, it's going to be heavy, that's the same rules that world uses. So I have to - I don't know if any of this makes sense outside of my head.

Yeah. No, it does. You've kind of got to treat it as though it happened. So, this is real –

Yeah. Because otherwise you have - Otherwise you can't treat anything like anything happens. And then you're just sort of a nihilist, and. Yeah.
Even when people found things that helped them to manage, what worked could change over time. Joe has found many different ways to understand and relate to his experiences of psychosis and said, “what works now maybe wouldn’t have worked in the past, and may not work in the future. Trying to make peace with my voices when I was still getting my grandfather's voice screaming at me, that wouldn't have gone well for me.” 

Others had not found anything that worked and could find themselves very quickly in a “crisis” situation.
 

Lucy, who had her first psychotic experience less than a year before she spoke to us, finds it hard to spot the signs when she is deteriorating. By the time she reaches out for help she is in ‘crisis’ and distraction doesn’t work.

Lucy, who had her first psychotic experience less than a year before she spoke to us, finds it hard to spot the signs when she is deteriorating. By the time she reaches out for help she is in ‘crisis’ and distraction doesn’t work.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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I think actually, if you had somebody that was kind of bullying you all the time, that lived with you and was always saying "Oh, you should just do this," you eventually would give in. And I think it's more like that than just a person saying "Why don't you cut yourself?" Like it's more of a, all the time, wearing you down. And they kind of - And you phone up the crisis line, and they'll kind of say "Oh, just try and distract yourself from it. So, maybe listen to music or watch a film." I think those things can work if you've got like a mild issue, but I think once it gets really severe and you're calling the crisis line, I think it - for me, listening to music doesn't really help, because I can't focus on that when the voice is just so kind of big in my head.

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, 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. And, 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.
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