Nikki
Age at interview: 19
Brief Outline: Nikki had a difficult childhood and felt different from others. Her experience of psychosis worsened after a traumatic event when she was 14. She now manages her voices well and actively supports others with mental health experiences.
Background: Nikki’s ethnic background is White, English.
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When Nikki was very young, she felt that other people were very different to her. When she was 5 or 6 she thought people around her were aliens posing as humans. She remembers her family watching ‘Haunted House’ on TV and feeling very uncomfortable with that. Her mother was unwell a lot and Nikki was a young carer and helped out in the home. Her dad was there for her but he worked hard and he didn’t know how best to help her. She was continually bullied through her childhood and other children treated her as “different, not in a good way”. When she was 14, after a traumatic experience, she started hearing voices all the time, which were very negative. She told a friend, but then discovered the friend had spread rumours about her. She had a very difficult period when she was self-harming regularly and tried to take her own life. She went to A &E many times because she couldn’t keep herself safe. She was “intensely unwell”, and felt confused and terrified by the experiences she was having.
Two weeks after the traumatic event, her GP referred her to Child and Adolescent Mental Health Services (CAMHS). Initially they didn’t think her experiences were severe enough, but within 6 months she had gone downhill and her school counsellor referred her again. This time she was seen and given some support. She has been given several diagnosis at different times including personality disorder, post-traumatic stress disorder, depression and anxiety, and once saw someone had ticked the box for ‘schizophrenia’ on her hospital records. She doesn’t necessarily find these labels helpful. She thinks that the NHS system has helped her but it is difficult to access help and she experienced stigma within the NHS.
Nikki has received support from CAMHS and adult services. She found CAMHS could be patronising. Everything she told them was reported back to her father, and that made it difficult to trust them. Adult services were better in that respect, but had their own flaws. Nikki has had 5 hospital admissions over the years, the last time was 3 years ago, and she has been in private and public hospitals. She found that private hospitals were very strict about safety and tended to want to keep her there. She never felt comfortable there and hated it. Although the hospital had kept her safe while she was there, being there didn’t help her to get better. She was discharged from CAMHS aged 17 and when she needed support six months later adult Services refused to help her because she wasn’t yet 18.
Charities have been most helpful to her, and telephone services run by charities are good because they are quicker to support her and less judgmental. She did also try talking therapies and found dialectical behaviour therapy good. Nikki is training to be a mental health nurse and currently volunteers for a number of charities as well as setting up her own mental health peer support group for young people.
Two weeks after the traumatic event, her GP referred her to Child and Adolescent Mental Health Services (CAMHS). Initially they didn’t think her experiences were severe enough, but within 6 months she had gone downhill and her school counsellor referred her again. This time she was seen and given some support. She has been given several diagnosis at different times including personality disorder, post-traumatic stress disorder, depression and anxiety, and once saw someone had ticked the box for ‘schizophrenia’ on her hospital records. She doesn’t necessarily find these labels helpful. She thinks that the NHS system has helped her but it is difficult to access help and she experienced stigma within the NHS.
Nikki has received support from CAMHS and adult services. She found CAMHS could be patronising. Everything she told them was reported back to her father, and that made it difficult to trust them. Adult services were better in that respect, but had their own flaws. Nikki has had 5 hospital admissions over the years, the last time was 3 years ago, and she has been in private and public hospitals. She found that private hospitals were very strict about safety and tended to want to keep her there. She never felt comfortable there and hated it. Although the hospital had kept her safe while she was there, being there didn’t help her to get better. She was discharged from CAMHS aged 17 and when she needed support six months later adult Services refused to help her because she wasn’t yet 18.
Charities have been most helpful to her, and telephone services run by charities are good because they are quicker to support her and less judgmental. She did also try talking therapies and found dialectical behaviour therapy good. Nikki is training to be a mental health nurse and currently volunteers for a number of charities as well as setting up her own mental health peer support group for young people.
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.
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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.
From a very early age Nikki can remember having very unusual experiences.
From a very early age Nikki can remember having very unusual experiences.
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Nikki started hearing voices after a traumatic experience at the age of 14.
Nikki started hearing voices after a traumatic experience at the age of 14.
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Do you want to say what it was?
It's difficult to fit in a box. I had an experience where I was babysitting a neighbour's son and something happened while I was doing that. And, you know, I felt I just basically just felt like I was a wrong person, even though I wasn't. But I didn't understand that at the time. I didn't understand what was going on. —
And that was a starting point for very different sort of experiences to the ones you had before?
Yeah, yeah. When that happened, obviously that happened like I you know, I remember being at school and I was just in like a normal lesson and I was, you know, I heard something and I was just like, the room was silent, I was doing an exam and I kind of was just like, what was that? I was just like looking around and there was no-one there. So I just kind of, kind of tried to pretend it wasn’t there, even though I was terrified. And then, like after school I'd be walking to the bus stop with a friend and like there was some other people around like saying stuff and then I was just like, ''What did you just say?'' And like and they didn't say anything. But I just, I heard stuff. So, that and then from that point on, I just started to gradually hear more and more voices that were really pursecutory and they, you know, they were just tell me like, you know, ''You should hurt yourself. You should kill yourself.'' You're this, you're that, you're disgusting like, why would you do that for? And this person hates you, blah, blah, blah. And, you know, I sometimes I can hear up to twenty or thirty at a time like and it's [laughs] that is difficult to live with, very very difficult to live with, to say the least. It's, it's just, it's very hard to think positive when you've, when you hear all the time that you're a terrible person, that you need to die. It's very very difficult. Yeah, so I started to experience that and then things just kinda went on a downward spiral and it just got to the point where I couldn't keep myself safe any more, so I had to be in hospital a few times.
When Nikki told the school counsellor what she was experiencing the counsellor tried to explain it but then Nikki had to return to her lessons.
When Nikki told the school counsellor what she was experiencing the counsellor tried to explain it but then Nikki had to return to her lessons.
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When she was in hospital Nikki saw that someone had ticked a box marked “schizophrenia” on her form. She received conflicting advice about whether this was her diagnosis.
When she was in hospital Nikki saw that someone had ticked a box marked “schizophrenia” on her form. She received conflicting advice about whether this was her diagnosis.
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And was that during the inpatient sort of times when you were actually in hospital that you got different diagnosis added on.
Mostly. It was mostly while I was in hospital, but also when I was a day patient with with a different service, yeah.
Nikki has been hearing voices since she was 14. She hears up to twenty or thirty voices at a time, some are just sounds rather than words. For her they are “real” and always negative.
Nikki has been hearing voices since she was 14. She hears up to twenty or thirty voices at a time, some are just sounds rather than words. For her they are “real” and always negative.
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And do you think that your, the actual experience of the psychosis itself has changed over the years for whatever reason?
I don't think so. I think since I was 14 it's been pretty similar. It's all negative. And it's very frequently, if not constant. It gets worse when I'm stressed. It gets better when I'm happy. And that's pretty much how it is.
And I still hear voices pretty much almost constantly. I'm able to live with them a lot more like, I hear probably about, I can hear, sometimes I hear up to like twenty or thirty different things like, it's difficult, it can, it can be like crying, that you hear or breathing or screaming or words and, for me, they've always been negative ones. I've never really had any positive ones. But I know everyone's different. Everyone has very different experiences with it. Just, for me, it was always negative. You know, it's difficult, it can really affect concentration. I have to concentrate kinda twice as hard, because I’ll be hearing loads of voices but I also have to concentrate on what I'm doing now and like the person I'm talking to and listening to. Trying to distinguish between what's reality and what's not. Even though, like hearing voices is very much real to me, yeah.
Nikki was referred to CAMHS by her GP, but was told she wasn’t “severe enough” to get their support. It was only when her school counsellor referred her again that they realised she needed help.
Nikki was referred to CAMHS by her GP, but was told she wasn’t “severe enough” to get their support. It was only when her school counsellor referred her again that they realised she needed help.
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And who had referred you to the adolescent services already?
The GP.
Okay. So you'd gone to see your GP with your dad or?
I went with my dad's girlfriend. Yeah. And she, and, you know, it was like a week or two after the traumatic event happened and —
Quite soon then?
Yeah, yeah. 'Cause like ever since that happened, I'd just, I was constantly crying. I was non-stop crying. So and they said, you know, can we do something to help and then, you know, they, they said I wasn't severe enough, so. Yeah, my school counsellor referred me again and that was, that, you know, got me help.
So that was a different experience that second referral made a big difference. Did you see the same people again or what was the difference then?
No-one saw me the first time. They got my GP sent a letter to them and they just replied saying, ''It doesn't sound severe enough.'' But when they actually saw me they realised, yeah, we need to support her.
Was there a big gap between those two, because you saw the GP you said about two weeks after the event.
Yeah. It was about six months. So by that time it was all just unbearable.
Sort of had to get really bad before they sort of recognise it.
Yeah, yeah.
When Nikki was 17 she was discharged from CAMHS and when she needed support six months later she was just under 18 and was told they couldn’t support her or refer her to adult services.
When Nikki was 17 she was discharged from CAMHS and when she needed support six months later she was just under 18 and was told they couldn’t support her or refer her to adult services.
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Yeah, I have had experience with adult services, but that one isn't a great one. As, when you're 16, 17, 18 age, that is [exhales] a nightmare of an age to be in, because it's such a grey area. 'Cause when you get to 16, you're a bit like, oh, we are becoming a bit too old for the child and adolescent services, but you are not quite old enough for the adult ones and it's difficult. Like, I was discharged from child and adolescent mental health services when I was about 17. And then, about half a year later, I needed support again. And they said that they wouldn't see me because I was too close to being 18 and by the time I reached the end of the waiting list it would be too late. But then they couldn't refer me to adult services, because I was too young. So they just said, sorry.
You were just in this gap.
Yeah. I went to the GP to ask for help by the way and she said, ''You are too old here, but you are too young there, so, sorry.''
Wow. So what did you do?
Nothing. I saw a, I saw my college counsellor which was great, but it was just so, 'cause I needed a bit more specialist support. But they couldn't give me that, because I was too old and too young.
There were times when Nikki went into hospital as a day patient, instead of staying over. Although there was a lot of travel, she could be home in the evenings and have diet coke and listen to her music.
There were times when Nikki went into hospital as a day patient, instead of staying over. Although there was a lot of travel, she could be home in the evenings and have diet coke and listen to her music.
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Brilliant, okay. So it was 'cause you, was that because you had the sort of comfort of home in the evenings and nights, but then, the interactions that you needed in the day with the specialists.
Yeah, yeah. That was what was most helpful for me, because I hated being away from home, because I didn't have like, like my music. I didn't have my headphones. I didn't have I loved Diet Coke, for example. I didn't have access to any of that. I didn't have access to any of the normal foods I like, none of the TV like my, my family and stuff like. So it was just, I hated it for that reason. But then, being able to have a bit of both was helpful.
Nikki was sent to a private hospital when there were no beds available on the NHS. She feels private hospitals are run “like a business”.
Nikki was sent to a private hospital when there were no beds available on the NHS. She feels private hospitals are run “like a business”.
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Like my dad can't stay with me? What on earth is going on? But then my dad had to go. Like they wouldn't let him through. And at that point as well, I had to kind of do what they said, because I was under their care now.
What kind of hospital was that that it was so different from the other ones?
Private hospital.
But it was still a child's—
Still a child's one, yeah. Adolescent, yeah. They took me into this like room with like squishy kinda seats that you find in primary school. I sat there and a doctor came and saw me and [sighs] they just kinda asked me questions about my life. What's been going on and that sort of thing and what thoughts I had and what feelings am I having? And then they said, you know, you're here voluntarily, but if you asked to leave, we will detain you. And I was absolutely terrified. And they took all my stuff. I wasn't allowed to wear any of my jewellery. They'd searched through everything and they just kinda said, ''Right, there's gonna be someone with you 24/7.'' And I was absolutely mortified, 'cause like, when I wanted to go to the toilet, I had to ask and then they had to watch me. And I'd never been in that situation before. And I was absolutely humiliated and I hated it and there was all these other people and, you know, people would come up to me and say, are you Prince Harry sort of thing and I was just like, no. And I was just terrified like not of the people, 'cause but it's just because I had no idea what was going on. Like I had no idea, but was so confused and I was, I hated being there, so I just tried to leave as soon as possible.
Did you have your own room or was it a sort of open ward or?
I had my own room. But I wasn't allowed, you're not allowed to sleep with a bra or underwear, any underwear on. And someone watches you while you're sleeping, the whole time. You are not allowed anything of your belongings with you, no, your toothbrush, all of that, they all stay in like the a locker and you're not allowed access to any of it.
And did they explain why they, why that was happening?
They just said, it's for people's safety. You know, I'm not really sure what damage a bra can do, but you know, there was their rules. It's very different when I went to a NHS hospital. I was allowed everything in my room. I got there and there was, I wasn't followed all the time. They, they allowed me to have my stuff. I felt a little bit more free, because my dad was allowed to take me out for like a drink or something, which was nice. —
And do you think that was to do with where you were at the time you went in or just the way the institution functioned.
Just the institution, yeah, yeah. I think private ones they, you know, they're very hot on security and safety. NHS have, they are as well, but, you know, they allow you your freedom a little bit more.
And when it came to going home, what was that process like? Who made that decision?
The doctors there really. But most of the time it was 'cause I was begging to leave [laughs]. And they're under pressure 'cause they don’t have many beds. And I just said, ''Look, I'm fine, I'm fine. Look I won't, I will never hurt myself again. I promise. It's fine. I want to go. I want like.'' And they just let me. And that was how it was most of the time.
And how long did you stay in for each time?
R: The first few times was very short. It was about a couple of weeks each time. The last time I was there for about five or six weeks. They were, they were all quite short, because I was just begging to get out, 'cause I hated every second of being there. It made me feel worse and I hated it. I hated it so much. All of my comforts, they were gone. Everything I was used to they were gone. I wasn't allowed my phone. I didn't have my family there. There was no source of strength or happiness in there for me. Kept me safe, yeah. But it didn't, it didn't improve me at all.
Nikki prefers taking anti-depressants to taking anti-psychotics. They make her feel “lighter” and she is better able to manage her voices.
Nikki prefers taking anti-depressants to taking anti-psychotics. They make her feel “lighter” and she is better able to manage her voices.
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The one I still take now it's an antidepressant. I find that antipsychotics don't really work for me and it's when I can manage other things that I can manage hearing voices and things.
Brilliant. Okay. So it was the antidepressant was that gives you the best benefits.
Mmm—
Yeah. And then which, do you know the name of the one that you are on?
Yeah, it's called, Sertraline.
How would you describe the benefits when you started taking that?
I felt like it [sighs] helped me to feel a bit lighter. Like a bit more, you know, less weighed down by things. Helped me to feel a bit less tense. I dunno, I feel like it helps me to kind of stay at an okay level and then the rest of it comes from myself, making myself happy.
And so that Sertraline is that one a day or how many tablets do you have to take or when do you take them?
I take two a day in the morning.
And does it fit in with your routine okay?
Yeah, it's the, I'm not too strict on the times. I just take it when I wake up, really.
Nikki has had support from a range of services. Dialectical Behaviour Therapy helped her to “manage emotions” and this helped her manage the voices she hears. She’s found charities most helpful because the staff aren’t time constrained.
Nikki has had support from a range of services. Dialectical Behaviour Therapy helped her to “manage emotions” and this helped her manage the voices she hears. She’s found charities most helpful because the staff aren’t time constrained.
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I've had service like used charity services like, helplines and stuff like that. And I find them a lot more helpful, 'cause they're easier to access. And that's basically the main reason, yeah.
Because you can pick up the phone and you've got someone there immediately?
Yeah. Yeah. And also I've had counselling from like different charitable services and I find they're quicker to support you and I find them less judgemental and I can't put my finger on like what else is, but I just find them a lot better and I felt a lot more comfortable with it.
Nikki contacted a charity for young people who hear voices that was organised by a voice hearer. She said it was “the biggest stepping stone” for her and helped her learn to live with her voices.
Nikki contacted a charity for young people who hear voices that was organised by a voice hearer. She said it was “the biggest stepping stone” for her and helped her learn to live with her voices.
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Although Nikki has lost friends because of her psychotic experiences, she’s also found “amazing” friends who she’s very open with.
Although Nikki has lost friends because of her psychotic experiences, she’s also found “amazing” friends who she’s very open with.
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I do, I think so, in a way, yeah. I've lost a lot of friends because they didn't know how to deal with it. And sometimes when I said things that they perceived to be strange or whatever then I've lost friends because of that. But then, I don't see that as my loss any more. I just think that's them not having much of an understanding and good for them, I hope they understand one day. And I have a lot of friends that do understand and that's more important to me. I, I have some really amazing friends that are just so supportive and amazing and they don't judge me and that's been great. And I feel like in a way me coming out and saying, you know, I do hear voices, it's helped other people to trust me with other things they thought they'd be judged for, because I am so open about it. But also it has had, it has been negative at some points that when I started college there was a friend from high school that went to the same college and they started going around to college saying, ''She hears voices, you know. Shouldn't friends with her.'' But then, I just said, ''Look, I, I get that you don't wanna be friends with me and you don't have to be, but you know, you don't need to spread rumours either.'' But luckily, a lot of the people at college, which were just like, ''I don't really mind you can hear voices. I'll still be friends with you.'' And it was just really nice but so I have lost friends but then I've gained the right ones.
After Nikki told a school friend about her psychotic experiences the friend started spreading rumours.
After Nikki told a school friend about her psychotic experiences the friend started spreading rumours.
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Nikki is training to be a mental health nurse. She feels that her own mental health experiences mean she can really empathise with people who are unwell.
Nikki is training to be a mental health nurse. She feels that her own mental health experiences mean she can really empathise with people who are unwell.
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It's good. It's tiring and it's a lot of work. It's definitely worth it though. It's annoying when you have to wake up at 5 am to go and do a 13 hour shift. You don't get paid for it. But it's still worth it. Still worth it. It's just difficult, but I enjoy it. I'm looking forward to finishing this, the course though.
And do you think that your own experiences make you, you know, add value in terms of what you offer there as well?
100%. I think the fact that I've been through the things that I have has really really helped me to have empathy and to be kind and that's the most important thing. I've spoken to a lot of people, I've said, you know, what do you think it takes for someone to be a good nurse? And they say, you know, someone that can understand, someone that can be nice. Someone that can be patient. Someone that can be empathetic. And, I have all of that in bucket loads because of what I've been through. So I think that has really helped, yeah.
Nikki says her psychosis is worse when she’s stressed and has less impact when she’s happy. The voices don’t “really affect” her any more as long as she manages her stress.
Nikki says her psychosis is worse when she’s stressed and has less impact when she’s happy. The voices don’t “really affect” her any more as long as she manages her stress.
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And is that something that you've learned to recognise over time?
Yeah, yeah. I've learned a lot. What triggers me like what doesn't, what helps, what doesn't how I can improve the moment that I'm in, that sort of thing. I've learned a lot more about it and have learned a lot more how to cope with it to a point where it doesn't really affect me if, as long as I'm not like overly stressed, it doesn't really affect me any more.
Okay. And so what do you think's sort of helped the most then looking back over, over time?
I think it was learning to talk about it and meeting people that had similar experiences. It was definitely mainly talking and through like volunteering and campaigning. Using it as a, as a way to do something good, so that it wasn't all bad. It had a purpose, really.
Nikki knows there may be a connection between good physical health and good mental health, but its not easy to “just go for a walk” when you are coping with the side effects of medication and have “20 voices saying ‘you should go and die’”.
Nikki knows there may be a connection between good physical health and good mental health, but its not easy to “just go for a walk” when you are coping with the side effects of medication and have “20 voices saying ‘you should go and die’”.
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Things have started to improve for Nikki since she was accepted to study mental health nursing. She became involved with lots of extra curricular activities at college, which gave her a purpose.
Things have started to improve for Nikki since she was accepted to study mental health nursing. She became involved with lots of extra curricular activities at college, which gave her a purpose.
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