Psychosis (young people)

First experience of psychosis

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.
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.
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”.
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.
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”.
But others’ experiences could be more difficult to pin down.
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”.
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.
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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