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.

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

Gender Male

Age at diagnosis 19

View profile

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.

Age at interview 22

Gender Female

Age at diagnosis 21

View profile

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’st see.

Age at interview 18

Gender Female

Age at diagnosis 17

View profile

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.

Age at interview 22

Gender Female

Age at diagnosis 21

View profile

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’st be coming back.

Age at interview 22

Gender Male

Age at diagnosis 21

View profile

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.

Age at interview 19

Gender Female

View profile

After suffering two head injuries Lucy started hearing voices and having weird thoughts and delusions.

Age at interview 22

Gender Female

Age at diagnosis 21

View profile

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’st 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

Gender Male

Age at diagnosis 16

View profile

Joe’s first psychotic experience happened when he heard his grandfather’s voice, criticising him, over his right shoulder.

Age at interview 23

Gender Male

Age at diagnosis 21

View profile

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

Gender Female

Age at diagnosis 15

View profile

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’st think his experience fitted that.

Age at interview 23

Gender Male

Age at diagnosis 20

View profile

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

Gender Male

Age at diagnosis 21

View profile

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.

Age at interview 24

Gender Male

Age at diagnosis 21

View profile

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’st concentrate on his studies or when he was talking to his friends.

Age at interview 23

Gender Male

Age at diagnosis 20

View profile

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

Gender Male

Age at diagnosis 21

View profile

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

Gender Male

Age at diagnosis 14

View profile

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.

Childhood experiences before psychosis

The young people who spoke to us had very different experiences of childhood. A few, like Joseph, Hannah and Sameeha described their childhood as 'normal',...