People talked about the start of their mental health problems. Some first noticed problems as teenagers - though a few said they were children at the time - others first had problems much later in life, in their 30s and 40s. Before people experienced psychosis many had had a period when they felt anxious or depressed. Some people could remember a particular moment when they started hearing voices or odd things happened (e.g. seeing skulls in walls), whilst others thought that everybody heard voices and only noticed them more when they were loud or distressing. When people looked back on their lives, they could identify experiences that they didn’t think were important at the time (e.g. such as being a ‘loner’ or always feeling ‘different’). People also had views about what caused their mental health problems; these ideas are covered in ‘Views about causes and triggers for mental health problems’.
First Signs
Before experiencing any ‘psychosis’ (e.g. feeling they were being taken over by demons, being told by a voice to cut off their cat’s tail), many people started to feel slightly paranoid or felt that their behaviour had gone ‘out of control’. Others couldn’t explain strange things that were happening to them, or felt physically very unwell.
Kirsty worked in a music store, but wasn't confident in her social life. She went to her GP with physical symptoms but he could find nothing wrong with her.
Kirsty worked in a music store, but wasn't confident in her social life. She went to her GP with physical symptoms but he could find nothing wrong with her.
Age at interview: 40
Sex: Female
Age at diagnosis: 24
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Started working in a music store. And within a couple of years, I’d worked my way up to manager. And I was actually thriving under pressure there for a while.
But my social life and my life outside of work was, you know, it wasn’t the norm, as it were. I wasn’t, I presume that I was quite popular at work, but I wasn’t really outgoing or extrovert, or any way confident and that in my social life.
And eventually my work life began to suffer as well, and I actually thought I was dying. I was getting a lot of strange symptoms. And I was backwards and forwards to the doctor, and that, and getting different tests done. And then he I’d gone in there one day and he said, “Oh, you know, there’s… you’re absolutely fine, there’s nothing wrong with you.” And I just exploded. And that. So he said, “Right, now I’m sending you to see a psychiatrist.” Sort of thing. And that was me in with the mental health service sort of thing.
Naveed first saw a woman standing by the side of his bed when he was seven and then had unexplained stomach pains for years.
Naveed first saw a woman standing by the side of his bed when he was seven and then had unexplained stomach pains for years.
Age at interview: 42
Sex: Male
Age at diagnosis: 15
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So the first real experience I had, I think I was about seven years old. I woke up in the middle of the one night and I saw a woman standing by my bed and I screamed out and she disappeared and Mum and Dad got up and there were nothing there.
What did the woman look like?
She was like covered in black, here, you know, like Asian women wear burqa. She was up there. She was covered you know, in burqa, from head to toe. But I swore that there was a woman standing by my bed but Mum and Dad looked everywhere. Under the bed, all around the house and couldn’t find anyone.
So how did your parents react at this stage?
My father, is some old school like, he was, I don’t think he was that understanding. Mum was, you know, I mean and I could depend on my mum, because she wasn’t just my Mum, she was like my best friend, my Mum. You know, we could talk about anything. I could tell dirty jokes in front of her. Anything. And she’d just laugh. So, she sort of knew there was something up. But they didn’t want to admit it. You know, they didn’t want to, and don’t forget I wasn’t even diagnosed with anything at that time. And then it sort of manifested that I used to get stomach aches and really bad stomach aches, you know, and used to go to a GP. They used to take me to a GP and the GP used to have a look and say, “There’s nothing wrong with him. There’s nothing wrong with him.” So, this went on for maybe ten years. Going back and forth to a GP.
Jenni felt as though she had been ‘hit on the head’, whereas Janey felt that at the time when she was enjoying herself at university she also felt she was ‘losing control’. Some people seemed to hear voices apparently for no reason, whereas others related their experiences clearly to traumatic childhood events such as sexual abuse or bullying (see ‘Childhood and life before diagnosis’).
Stuart talks about going on an anti-communist march in Russia, receiving a threatening phone call in the middle of the night and then feeling frightened about his presence in Russia.
Stuart talks about going on an anti-communist march in Russia, receiving a threatening phone call in the middle of the night and then feeling frightened about his presence in Russia.
Age at interview: 45
Sex: Male
Age at diagnosis: 31
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I took part in marching with the people against what was happening, but after the second night, the second day of me marching, I got a phone call about 2 a.m. in the morning. Which woke me up, and I answered the phone, and it was just this man in Russian, sort of swearing at me, really shouting and swearing at me. And I could, I spoke the language a bit at the time, so I understood he was swearing at me, and he was going on about me, you know, who the hell did I think I was involving myself in their business. And I just put the phone down and then I just sort of started, I started to experience this tenseness inside, and I remember my heart was pounding. And I suddenly started to really fear what I’d done, and, and, and I couldn’t sleep that night, and when I was walking round the hotel the next morning, I was just like, you know, felt that, I’d done something very wrong, and that... you know, that I was going to get harmed in some way.
And I started to pick up on, sort of walking round the hotel, I, that people looked at me. I felt that they were, you know, it was they weren’t just looking at me, they all knew who I was and that somehow my life was starting to be in danger and ...And it’s possible, you know, it’s... you know, it’s possible that they, they... you know, was I just a tourist? Why was I touring? You know, when all tourists at the time were given the option to leave Moscow and they did. And there’s a few other people that stayed, you know, but may be they were questioning my …I mean there was a lot of paranoia at the time, you know, with the cold war everything and being sort of... East and West, and they knew I was from the UK, and I think they be, you know, they were thinking who is this man? You know, and, and, so that, that, you know, sort of ignited my paranoia.
Many people heard and saw hallucinations only as adults; but a couple of people described these beginning when they were younger.
Dolly was terrified when first hearing voices while listening to a tape player. Within a week she thought she was being chased by the devil and tried to kill herself.
Dolly was terrified when first hearing voices while listening to a tape player. Within a week she thought she was being chased by the devil and tried to kill herself.
Age at interview: 39
Sex: Female
Age at diagnosis: 22
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Basically I was recording some music off the, off the off the radio, and suddenly I started to hear a kind another voice, apart from the person speaking on the radio and it was quite deep and it was quite gravely and it, it was, kind of, almost sounded a bit demonic. And I th…First of all, it just, it started just for you know, a couple of seconds, then it went, and I thought may be there was a bit of, kind of interference on the radio. But then it was kind of, directed at me, it was going, “Dolly, I can see you. I’m watching you.” And I got so scared. And I unplugged the radio. But I could still hear, this, this voice. And it, it just... to me, I mean now, I know, it was the beginning of my psychosis, but I actually thought, there was, you know, there was a devil in the room with me. And it was speaking to me.
And about fifteen minutes, this was about, it happened for about fifteen minutes, and then it kind of faded away. And... well, for the rest of the day, I had nothing. And I thought I didn’t know what it was. I was really upset by it, but I just thought, I thought it had gone. But like the next day it came back.
And this time it was like a constant kind of being talked at. You know, like hours and hours, and not only that my thinking started to get strange. I thought people, like on TV were directing kind of, or kind of trying to control my thinking. It was very, in a short period if time, I would say about a week, I went from just having nothing to be kind of totally psychotic, and in fact because I thought I was basically.
This is what I thought at the time, that I was being taken over by demons. I kind of, just a week later, I tried to kill myself. It was just, you know, that one week of just having nothing and then just being a person who thought she was, you know, being chased by the devil and wanted to kind of ruin my life. It was, the onset was really, really quick and fast and just total, to me, and totally out of the blue really.
Cat felt in her teens that people were talking about her. She left her place of work suddenly as she thought people were 'plotting' and then collapsed in a supermarket.
Cat felt in her teens that people were talking about her. She left her place of work suddenly as she thought people were 'plotting' and then collapsed in a supermarket.
Age at interview: 45
Sex: Female
Age at diagnosis: 29
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Well looking back I had problems in my teens, but I didn’t know what it was and I used to think people were laughing at me, and following me, and I thought they were telling stories. And when I was doing my law degree many, many years ago I asked one of the lecturers if there were some stories going around about me, and he said, “No, it’s in your imagination. “ And I still think that there’s something going on, but when I ask, challenge people they say, “Don’t get paranoid. Go and see a doctor.” So that’s it really. And I didn’t get help until at least in Easter 1995 because I was left place of work suddenly because I thought plotting was going on and then I was playing in an orchestra and I thought that there was like rumours being passed round, and it got to the stage that when visiting my Mother in Gloucester, at the family home, I just couldn’t get round Tescos. Almost collapsed and my Mother said, “You should come to help.” And I said, “Look, I don’t feel very well.” So anyway I went to see my GP there, the family GP and he sent, he referred me to psychiatric doctor and the rest is history just…
First episode of ‘psychosis’
Most people we spoke to could describe a time in their life in which one or more of the following happened to them' seeing, hearing, feeling or seeing things that weren’t there (e.g. Freddy Krueger sitting in the back of their van); feeling extremely paranoid; having bizarre or implausible ideas not shared by others around them (such as that ‘the day of judgment’ was imminent), or feeling as if they were ‘out of their body’ (for more on these kinds of experiences, see ‘Hearing voices, seeing things and unusual beliefs’). When these things happened for the first time, nearly everyone reacted by feeling terrified, as people didn’t know what was happening to them. Others just felt puzzled and confused.
Rachel thought something was going drastically wrong, thought the world was going to end, and saw visions of both heaven and hell.
Rachel thought something was going drastically wrong, thought the world was going to end, and saw visions of both heaven and hell.
Age at interview: 47
Sex: Female
Age at diagnosis: 27
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When I was about 27, I realised something was going drastically wrong and I picked up the phone to my then GP and said, “I think I need to be in hospital. A psychiatric hospital.” It’s quite a renowned psychiatric hospital in this area. And her response to that was, “Well what do you want to go there for?” And that was the limit of the help I got from the GP at that time. And so I thought, oh my God I’m on my own. And with that avenue of help gone my mental health really, really deteriorated over the space of about four days. I just one night, I just woke up and I just heard a voice saying to me, “Do you really love your Father?” There was nobody else in the room. I was on my own. And I just remember thinking, yes, I do. Yes, I do. It’s like the whole of the top of your head comes off. There’s just this incredible rush of energy and, and hysteria almost. And, then I started to hallucinate visually, and I just saw this lovely garden, and I thought oh this is heaven.
And by that point I was completely lost because then I had an alternative to that, and I really believed I was going to hell. I thought I was dying. I thought I was going to hell. I’m not desperately religious. And I woke up and Mum came into the room and I was completely gone. And we were kind of left to deal with it for a couple of days. I didn’t understand what had happened to me. I really thought I was dying. So I picked up Bible [laughter in voice] and read Revelations which is not a very good thing to do. And for two minutes I actually believed that I was Christ, until I was logical enough to think, well I’m not male, so what’s happening? And eventually I stabbed myself in the liver with a knife, because I believed the world was going to end. I thought somebody was going to break into the house and murder my Mother, and the physical sensations I had of just being about to explode literally. I could feel myself inflating. I just did something out of desperation to stop that feeling.
Pete found that he was locked in a world of voices, paranoia and depression. He had an out of body experience and found his behaviour became very erratic and sometimes violent.
Pete found that he was locked in a world of voices, paranoia and depression. He had an out of body experience and found his behaviour became very erratic and sometimes violent.
Age at interview: 48
Sex: Male
Age at diagnosis: 30
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And I think when me wife started to really realise was she wanted to foster a child because our children were at school full time and we’d got plenty of money and a big house and she wanted to, something to do, you know, she arranged for a Social Worker to come and visit us and, this journey home to visit this Social Worker should have took me thirty minutes but it took me three hours because if I saw someone I thought I knew I would drive in a different direction, I couldn’t get home because I thought I knew people and they were all out to harm me. And eventually I did get home and this Social Worker amazingly was still there and she was an elderly lady about five foot tall and I’ll never forget her, she had a red coat on and a black beret, and she was in the front room and, and as I walked into the front room I was bombarded with more voices than I’ve ever heard, it was a real crescendo, and he kept screaming, “That’s a man dressed up and a French spy, you should get him out of here.” So [laughs] I turned and walked out and me wife said, “What’s wrong?.” And I said, “That’s a man, it’s a French spy you must get them out of here.” So she asked this lady to leave and, as she was leaving this lady said, “Well why do you want me to leave you’ve invited me here?”. And me wife said, “Well [laughs] me husband thinks you’re a man and a French spy.” So she [laughs] then she, “You’re not going to lost, let us foster kids [laughs] after things like that you know.” And she told me to go to the GP and, I did and I explained what was happening and he just said, “You’re stressed, take these Beta Blockers you’ll be fine.”
And they didn’t really help and again I still had this big fear of disclosure what had really happened, and I hadn’t slept for days and, a real bad period of insomnia and it was in the early hours of Sunday morning, I had an out of body experience, I was out of me body, I couldn’t get back in, at that point I actually thought I had died, I really, really thought that I’m going to die at this point. I eventually did get back in bed, kind of back into me body and I went to bed but I was crying uncontrollably which is something I learnt as a child you don’t do because it’s a sign of weakness. And me wife asked me what was wrong but all I could say to her was, “Why’ve you let me die on me own after all I’ve done for you?”. And she couldn’t understand what I was saying, and I got up the next day, and I had this obsession with lights, I had to put a fridge door on so there’s a light in there, me wife was begging me not to go to work but I did and, been a problem on a job and this guy was shouting down the phone so, I’d tell him to F off and put the phone down, and me business partner said, “Pete you can’t speak to people like that in business.” And that’s, that was all he said and I hit him over the head with the telephone and I drove home and I curled up in this chair in the front room and e[h], and that basically was, was the beginning of the end really, I didn’t wash, I didn’t eat, I didn’t shave, I was locked in a world of voices, paranoia and depression, and eventually I was admitted to services and sectioned under the Mental Health Act which carried on for a period of about ten years.
Some people felt as if they disappeared into a dark world (e.g. with evil all around) - with one person describing this as like being sucked into a vortex; others kept trying to make sense of strange things that were happening to them such as television presenters talking to them, voices coming from phones or electronic devices. At the same time many people stopped caring for themselves properly, didn’t wash or brush their teeth, and couldn’t work.
Jenni found that she could smell things strongly, and thought that television programmes were made for her, but now thinks bizarre early life experiences and her subconscious had been 'tipping her over the edge'.
Jenni found that she could smell things strongly, and thought that television programmes were made for her, but now thinks bizarre early life experiences and her subconscious had been 'tipping her over the edge'.
Age at interview: 30
Sex: Female
Age at diagnosis: 26
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Like the strangest things kept happening. It’s like, you know, like you get twilight hour, you know that, like in a movie where it goes twilight hour, and it’s all oh nah nah nah nah. And it’s a bit like that. Like honestly, the strangest things kept happening. Like….
What sort of stuff was going on?
Like once I went to visit my friends and when I got home, all I could smell of was cats litter. And like it stank. And I was like how the hell has this happened, I didn’t even go near their cat litter. And I was like, oh my God, they’ve cursed me. Do you know what I mean. Just imagine, imagine that in your reality. Like, it’s like, what on earth? But that was like it was liked they cursed me when I went to visit them. They must be witches and stuff like that. It was really bizarre. Yes. Really interesting. I don’t know what that was about or, yes, but I know now looking back, like my experiences, my subconscious was like coming into the front of my brain. So like, weird thoughts that I had, like I think I built up a weird perception of myself, and a weird perception of the world, and then it all exploded, because it got too much. Do you know what I mean?
Yes.
Because I had, I did have interest, bizarre experiences growing up, like my adopted Mum she’s very aggressive and quite frightingly bitchy and stuff like that. And I think I was very scared as a little girl. Of her, and like her losing her temper and stuff. She was very cold and callous, and like imagine you’re a nice homely mummy, but they’re like that. It’s like, it’s enough to tip anyone off the edge you know. But like the other types of things that happened was I’d be watching the telly and my perception would be that what they were saying related to me. I’ve heard this one before, but it’s’ different to how you think when it actually happens. It’s like, like it, it’s like, it’s like you’re learning, but you’re very conscious that you’re learning. Because it seems so relevant. You’re like picking up really loads of tools, kind of thing. You’re like wow, wow, wow, this is interesting. This is interesting. And like, you’re like God, thank God I watched the telly. Thank God I watched that programme. It really enlightened me. So it’s very subtle, but it’s like your perception of reality is like a bit distorted. Because to any one else, it’s like oh yeah I watched that TV programme. That was interesting. But to me, it’s like oh God. It’s heaven sent. Do you know what I mean. Yes. It’s like that
People described the onset of an episode of psychosis as having ‘racing thoughts’, feeling ‘elevated’ or just ‘skew-whiff’. Many people remembered that an episode of psychosis followed not being able to sleep, whilst other people felt that it was the voices and racing thoughts that prevented sleep.
When Graham first went into psychosis he thought about self-harm and went into some woods with some razor blades as he believed that his blood was poisoned and that there were evil spirits around him.
When Graham first went into psychosis he thought about self-harm and went into some woods with some razor blades as he believed that his blood was poisoned and that there were evil spirits around him.
Age at interview: 47
Sex: Male
Age at diagnosis: 22
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And this was when I first went in psychosis. Basically I began to stop sleeping. And accompanying that I couldn’t stop thinking and for the first time in years the thought of self-harm became really prominent in my mind again. And I told my wife that that was what I was thinking. And we went to see a GP who made an emergency referral to a psychologist who was going to see me quite quickly to see if we could do something about it.
And then it’s really hard to describe what happens. I wasn’t, I was just thinking, and thinking, and thinking, and not relaxing and then everything inverted. And half formed thoughts became very real.
I began to think that... my blood had been poisoned by evil spirits and that I was evil, and that there were spirits around me, warping my thoughts and changing my thoughts, and that was very frightening and I didn’t know what to do with it.
And I think the worst thing I’ve ever done was one night when our son was in bed, and we were sitting down having a drink, I told my wife, that I had to go to the woods to get rid of the evil in my blood by cutting my wrists. And you know, it’s, it’s something that people don’t know how to respond to. So she just had to watch me walk out the door with razor blades.
And... I went to the woods and again I’m so glad I’m such a coward, because I didn’t do much. But what my wife must have gone through knowing that I could die and not knowing why I was doing it. It must have been terrible.
For most people the first experience of psychosis was the most frightening. Some were so unwell during the onset of psychosis that they were taken to see a doctor, and even kept in hospital involuntarily (i.e. ‘sectioned’ – held under a section of the Mental Health Act. See ‘Hospital treatment and compulsory care’). Many felt that if they experienced psychosis again, they had developed better strategies to cope or at least understood a little more what was happening. Many people say they now concentrate on things which help them stay well; for more on this see the ‘Strategies for everyday coping’and ‘Recovery’ topics.
Last reviewed July 2017. Copyright © 2024 University of Oxford. All rights reserved.
