Psychosis (young people)

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”, “good upbringing” while others had difficult childhood experiences such as bullying or family violence. Chapman came to the UK from Zimbabwe to seek asylum aged 16 and his sister, who he was close to, died when he was very young. Reflecting on their childhood could help people understand their later experiences of psychosis.

Ruby’s father was abusive, and she started self-harming when she was nine years old. Things reached “breaking point” when she was 19.

Ruby’s father was abusive, and she started self-harming when she was nine years old. Things reached “breaking point” when she was 19.

Age at interview: 22
Sex: Female
Age at diagnosis: 19
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Things started generally when I was quite a bit younger. I mean, I started self-harming when I was nine. So it's been going on quite a long time. And then, in my teenage years I developed an eating disorder. But part of the way that my dad was abusive was that he would control everything. So he wouldn't let me see any health professionals about it. And so, yeah, I went behind his back a few times. I got counselling at school. But he found out and so I wasn't allowed to do that anymore. And I used to say that I was going to one place and go to Mind. But he found out about that as well. So, I wasn't allowed to go. So things started when I was younger, but yeah, things kind of reached breaking point just before I turned 19. I was still living at home at the time and I went to my GP and said, look, I can't carry on how I am. So she referred me to mental health services and then when I went home that night, my dad made me homeless because I had gone behind his back to, to get that help, so we've not spoken since. 

Nikki describes a difficult childhood, being a young carer for her mother, and growing up in an area where she saw things she shouldn’t have seen as a child.

Nikki describes a difficult childhood, being a young carer for her mother, and growing up in an area where she saw things she shouldn’t have seen as a child.

Age at interview: 19
Sex: Female
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Well, my mum was quite unwell when I was born. So she struggled quite a lot. My dad was amazing, but he always had to work a lot. So, he didn't always see what was really going on. It was difficult. I have two sisters and older sister and a younger sister. And we get on so well now, but it didn't always used to be that way. We used to really argue and fight a lot. And I always compared myself to them and I thought they was, you know, the pretty ones. They were the awesome ones. And then, so this kind of like built up this inner critic of myself—

Were they older then or younger?

One's younger and one's older. Yeah. But like comparing myself to them like brought out this inner critic and then because I was bullied at school and in my local area, because there was these people. 'Cause I lived in flats there was these people in different flats that just did not like me for whatever reason. And, I just felt from all angles, you know, you’re, like it just felt like everyone was saying, ''You're different.'' In some way, but not in a good way like. And it, it was really difficult and obviously when you're like not even six yet, it's a bit like, I don't understand what's going on, like why does everyone else kind of seem to have good stuff and I only have bad stuff. And, you know, like I think where I grew up, [sighs] you, you see things like you just don't, you shouldn't see, really as a child. There are people around you that are sometimes violent. There are people around you that you know, take drugs and stuff. There, there are, you just, you shouldn't really witness that as a very young child. But, you know.

And was that in the general environment of where you lived or not sort of in your family or—

It wasn't in my family, it was just where I lived and also like family friends that sort of thing. And it was just difficult. It just baffled me like it, it just confused me. And then I heard all these different beliefs about the world and what must be right and what must be wrong and then it just really conflicted how I felt and how I thought and how I perceived the world. And then, you know, I went to school, I was always, always bullied. It was it was ridiculous. I'd come home. I was a young carer for my mum, actually she was really unwell in many ways. So I'd be looking after her and I'd be doing the washing and I'd be you know, doing all this stuff and I wasn't even ten yet, [laughs]. I like, I was, I would be just, you know, I'd had all this responsibility on me and my sisters didn't do as much, so that confused me and I thought I was there to be used. So, [exhales] it's, my childhood wasn't a fun one. When I look back on it, I just think it's not really any wonder why, for so long, I struggled, 'cause it was a difficult childhood. 
Behavioural and learning difficulties

Some of the people we interviewed recalled having difficulties controlling their emotions when they were very young, and were seen as “disruptive” at school. Fran could be “out of control” and, as a young boy, Tariq was known as “the naughty one”. Having other physical or mental health experiences alongside psychosis could create additional challenges that affected people in different ways: Barry was diagnosed with autism and had “fixed ideas” which meant he sometimes refused to accept other people’s opinions. Andrew Z had Asperger’s which caused problems at home, though not at school, where he got on well with his peers.

Dominic was diagnosed with ADHD when he was 5 and could lose his temper easily.

Dominic was diagnosed with ADHD when he was 5 and could lose his temper easily.

Age at interview: 24
Sex: Male
Age at diagnosis: 21
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I had a very rough childhood. I was one of the, me and my sister were the first two kids in [the city where I live] diagnosed with ADHD. We went to a place called, [name of place] which houses young children to test medication on them and see what medication works which was horrible, it really was. I don't blame my parents for it, because they had to do it. 

Do you know how old you were then?

I was five. 

Five, my gosh.

Five and I was away from home for two weeks doing this. It was like a prison, it was. You had to go to your room at certain times and you was fed really horrible food. It was, it wasn't very nice. 

Did they explain to you what was happening?

Yeah, they did. But I was hyperactive little kid. I didn't really listen. I was just, why am I away from home? Why am I not at home watching my TV and playing with my sister. What's going on?

Five is very young as well to understand. 

Yeah, exactly. And it, after that I had a psychiatrist from the age of five onwards, which made me think I was, something wrong with me, that I was different to other kids, 'cause I was asking my friends, do you have a psychiatrist. Do you go somewhere? No, I don't know what a psychiatrist is—okay and so then I felt really different as it was. And I was a ginger kid in a young chavvy school. 

I hadn't even thought that until you said it. 

No, no, no, but I, I embrace it now. Now, I am ginger and proud if you will, you know? But back then, I didn't know that you could be ginger and proud, because everyone I met was just so hate, hateful towards me. 

Really?

Yeah. Which led me to be like I was. I was bullied from a very young age. And one day I’d had enough of that bullying and I put a portable whiteboard round two kid's heads. And that was the start of my anger. And, I wish it'd never happened, because that was the worst thing that ever happened to me.
Low mood and self-esteem

Some people experienced low and depressed mood and lack of self-esteem as children. Severe depression and severe anxiety are listed by NHS Choices as possible psychological conditions that can trigger psychosis. Some people talked about feeling low and anxious because of family circumstances and bullying at school. Low mood could reach extremes and Sam, Nikki and Ruby self-harmed - for Ruby, whose father was abusive towards her, this began when she was just 9 years old. Low mood and depression are also common symptoms for those who experience bipolar disorder: Luke suffered from depression and low mood through sixth form without a diagnosis and now has a diagnosis of bipolar disorder.

Joe doesn’t remember being happy before he started university. Growing up he was expected to “man up”.

Joe doesn’t remember being happy before he started university. Growing up he was expected to “man up”.

Age at interview: 23
Sex: Male
Age at diagnosis: 21
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So, when did the sort of depression start then, do you think?

Either about three months before, or about five years before, depending on what you define as depression. Because I don't really remember being happy before my first year of uni. The first year of uni, best year of my life. I got into theatre. I wasn't living with my parents any more, I didn't have to see my family. I was, with all my friends, people I genuinely cared about. And then everything just started deconstructing, from the summer onwards.

Okay. And had you had any sort of help with the depression beforehand?

No. I – [sigh]

Just that second year of uni?

Yeah. It was - it was almost like when I got to uni, after my friends died I had a reason to go and seek help. But growing up it was always, you know, stiff upper lip, bite the bullet. You know you, just - you know - man up. Which was a bit crap [laugh].

Yeah.

But, yeah.

And do you think - Well we'll talk about that a bit later, about sort of other support around -

Yeah

And so when you went and sought help for the depression, was that something you initiated? 

Mostly. I thought I should really go and see someone. But I was having anxiety attacks at the same time. And like three times I walked up the steps towards the, the - I forget - what's it called - Student services building. And then just left again. And then I texted someone in my group, I said [to my friend] ", can you take me there, because I know I won't go myself?" And, yeah.

Sam’s psychosis “stemmed from being bullied” in school. She had also been experiencing depression and was self-harming.

Sam’s psychosis “stemmed from being bullied” in school. She had also been experiencing depression and was self-harming.

Age at interview: 18
Sex: Female
Age at diagnosis: 17
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Because we started doing GCSE from year 9 and year 9 was a bad year for me anyway, because I started to self-harm and stuff and fell back into my depression and feet first and yeah. And then, of course, 'cause obviously that's when I started to get bullied, because I was self harming. And because of how I, because I was different from everyone else. 

So that was in the school environment.

Yeah. And the teachers just, basically in the classroom just ignored it. And half the time when I decided to shout back at them, I got in trouble. So I just stopped saying anything and just slowly stopped turning up. 

Sounds like there wasn't very much awareness.

No, they sort of and there was no point sort of telling anyone, because when you did, they just sort of like told the person that you told them and even if they said someone told me that they knew the person that was bullying you knew it was you that had gone to someone and it just got worse. I stopped telling anyone and I just stopped turning up to lessons. That was the only way I could just sort of escape it, because they started, because it was like really hot classrooms. I wasn't gonna sit with three coats on just so I wouldn't get poked fun at, you know. But, and that's sort of when I started sort of like hearing bad things about myself, because of like that. The only thing going through CAMHS and that, they've sort of realised is that it's sort of stemmed off being bullied. 

I was gonna say. 

Yeah, they sort of realised it's sort of, that's the only thing they could sort of put it on it. It's sort of being stemmed off sort of being bullied about, you know- And especially because I was overweight in school and constantly being called, fat. And they [sighs] and then I started hearing things like about myself and I started like hearing the bullies when they weren't even around me or I was sat in the office on my own. And, so, it wasn't until my key worker sort of decided to say, ''Look, you need to go and see someone because it could be something more than...'' I said, ''No, it's just anxiety.'' And she said, ''Yeah but it could—'' That's when she started to think there could be something more than that. 
Bullying

Bullying can have a lasting impact on a young person’s life, affecting their self-esteem, and ability to make friends. Where prolonged bullying leads to absence from school this can also affect study and life chances and effects self-confidence and self-esteem. 

Bullying could range from odd remarks to frequent attacks that were not addressed by parents or school teachers. The reasons for the bullying varied. Tariq was bullied at school because of his faith, Dominic was bullied because of the colour of his hair. Nikki, who had unusual experiences from the age of 6, mentions being bullied for being “different”.

When he was in year 10 and 11 of school Tariq had a “campaign of prolonged bullying” against him because of his religious identity, and he was once attacked with a cricket bat during a PE lesson. He truanted from school after that.

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When he was in year 10 and 11 of school Tariq had a “campaign of prolonged bullying” against him because of his religious identity, and he was once attacked with a cricket bat during a PE lesson. He truanted from school after that.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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So what happened during that two years, the bullying was so bad that what really stopped me from going to school was in the last nine months, and it was an assault that had taken place during a physical education, we call it PE, where I was attacked with a base, with a cricket bat. It wasn’t very hard hit but it was someone had hit me right on my legs and it was, they’d hit me and the person who was the teacher during the lesson was my form tutor and he was a PE teacher at the school and he did nothing to intervene or stop the violence. And when I did approach him and asked him he said that I was responsible and that if anyone had come to him, if the head teacher had approached him he would say that it was me that assaulted the student. At that point I was amazed that I was being blamed for something I didn’t do but what I did notice is that every time that these bullies were subjecting me to these assaults and every time I did report it nothing was done about it. Nobody was spoken to, no action was ever taken and I was the one that was being held back in detention, I was the one that was being told off, you know, stop making trouble, when I was just coming to school as normal. But then at that period I, because I was young I was vulnerable, I didn’t know what I couldn’t think straight as well I thought to myself I, it must be my fault that all these people are bullying me because I must have done this, done something. But I don’t know what I was doing wrong. well I did feel, even what I think what I did do was that I made students feel jealous because I used to come to school and I used to work hard and that really, [pause] if I could put it in this term it really pissed them off that I used to come to school, I used to work hard, go to lessons and I tended to keep to myself, because I was a new student I didn’t tend to mix with anyone else, I’d rather keep to myself, I’m not there to make friends and my parents were really, you know, pushing me to get good GCSEs etcetera so, and they didn’t like that because they’re used to being in the big gangs and walk around and I’m not that sort of person. So after that assault in the, during the PE lesson that was the last day I actually went to school and after that I spent six months truanting from school. 
Memories of bullying and the emotions attached to them could be very strong. Some, people felt that the anxiety associated with the bullying contributed to the experience of psychosis.

Andrew X, explained how bullying led him to “self-loath” and he began to hear voices.

Andrew X, explained how bullying led him to “self-loath” and he began to hear voices.

Age at interview: 24
Sex: Male
Age at diagnosis: 14
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I had quite a difficult time at school and didn't really respond the best to education I was quite frustrated there. And I ended up really struggling. So I just stopped attending school. I started to become quite socially isolated and as time went on, I sort of- as that social isolation grew, I became, I really started to self loathe. So I hated myself. I couldn't stand myself, you know. And that sort of self-loathing sort of developed into something quite severe for me, you know. It was almost like this big black cloud came over me. I was 14 years old at the time. It wasn't the best of situations to be in. Then I started to experience some really strange phenomenon's, I started becoming really paranoid. I started to hear things. So I heard three voices. I started to hear three voices. 

So at this time, you are in school and you said you'd always been kind of unhappy in school. How long had that all been going on for?

I'd say probably about two years, yeah. And that was sort of the apex of that. You know, I had some difficulties with bullying and all that as a lot of people do in school, unfortunately. And it just built up. You know, and I didn't have a, didn't have any opportunities to make sense of my feelings and my emotions. It just got worse and worse and worse and worse and worse.
But the lack of confidence that resulted from bullying could be reversed when people later had positive experiences with their peers.

Barry was bullied a lot at school until he was 15 and always felt “down” about himself. When he met new people on a youth club retreat who were nice to him it gave him a confidence boost.

Barry was bullied a lot at school until he was 15 and always felt “down” about himself. When he met new people on a youth club retreat who were nice to him it gave him a confidence boost.

Age at interview: 19
Sex: Male
Age at diagnosis: 16
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Well, this probably didn’t affect, this probably didn’t affect the exp, the mental health illness at the time, but it might have some background effects sort of thing. Like when I was at school I got bullied a lot. Didn’t enjoy school whatsoever. I didn’t have any friends whatsoever. Then when I was fifteen maybe fourteen yeah, when I was about fourteen, I went on a residential with a youth club. Can probably say this [the UK]. It was a mountain centre. So different people, different, loads of different organisations who came to use it, and I had chance to climb [a mountain]. But what had it, did it for me was like, there was another school there. And I got along with them all very well, and for me it was the first – I never really got on with people and that gave me a big confidence boost. And I think when you are always feeling down about yourself, you tend to feel like everyone’s doing something wrong – like, like they’ll always. If, if there’s a silent kindness you will almost feel like there’s – it, it’s some sort of mixed up joke amongst them and you, you just don’t feel like anyone wants to be nice to you. But I think it’s important to remember sometimes it is just genuine. That they do care, or they do enjoy your company, and not to always put the downer on things.
Unusual Experiences in childhood

The young people who spoke to us had had their first notable experience of psychosis between the ages of 14 and 21. However, some described having unusual experiences during their childhood, before more “obvious” signs of psychosis began. During Chapman’s childhood in Zimbabwe he remembers seeing things that were out of place and not knowing if they were real or not. He didn’t tell anyone because he was afraid of being outcaste from his community. Fran said she used to see pixies in the grass and thought everybody saw them.

From a very early age Nikki can remember having very unusual experiences.

From a very early age Nikki can remember having very unusual experiences.

Age at interview: 19
Sex: Female
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I think I feel like it started when I was about five or six years old. I didn't realise at the time, but like on reflection that's what I kind of think I always had a difficult childhood. I, I was bullied a lot. I experienced abuse quite a lot. My family situation was quite complex so there was just loads of things going on and I didn't really understand the world and I was only really little. And like I was, I was absolutely convinced that everyone else was an alien and I was a human and that this was some sort of experiment and I was like the test, test subject and like, like at night or when I wasn't there everyone would kind of unzip their human mask thing. And they'd be an alien and they'd go into like this room and like planning up how to make me feel rubbish the next day. I was absolutely like convinced about that for a long time. And I would kind of see things that would make me scared like I would always see shadows and things and it terrified me, like my family always used to love watching things like Most Haunted and I would scream and cry and go, ''I don’t wanna watch it. I don't wanna watch it. It's scary.'' And then they would just say, ''Stop it, Nikki. It's not real anyway” and it's just. And I was terrified because I was seeing, I was seeing shadows and things that like so, to me it wasn't just pretend, it felt like it was real and there was something kind of just haunting me. And it was, you know, terrifying. 

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