I had a lot of time when I was just in and out of hospital and like I was trying to take my GCSE’s at the same time and then it was just difficult. And then, but then I managed to get into college. It was a really good college. And I made a new friendship group and, you know, things started to improve. I started to get involved with like the extra curricular activities and that really helped me a lot. And it made me feel like I had some sort of purpose and then through that they went on to ask me, you know, ”Do you wanna speak at this event?” And I said, ”Might as well, yeah. And then I did that and then that gave me a lot of confidence to use like to share my experiences in a way that could help people understand. And so that kind of sparked off like a series of different volunteering, campaigning and that was really good. And now I’m at university studying mental health nursing. And I still hear voices pretty much almost constantly. I’m able to live with them a lot more.

Well, my physical health isn’t great. [Clears throat] Sorry. I’ve always been a little bit overweight. It doesn’t really bother me as much any more. But it seems to bother my GP [laughs]. I think as well like with the lack of motivation that you get when you’re experiencing mental health problems and the fatigue that you get, it’s difficult to then, you know, have the energy to go exercise and go and get a healthy diet. I don’t think people understand that, you know, that when you are struggling, you can’t just go for a walk. You can’t just go for run. It doesn’t work like that. It’s difficult. It’s exhausting. And when you’re spending all the energy you have into fighting the battle you’re having inside your head, the last thing on your mind is going for a nice walk or eating an apple. Yeah, so it’s hard and it does affect physical health, especially like with the side effects of medication and things like that. Yeah [laughs]. There’s side effects of like medication can affect your physical health quite a lot. You know, like when I was really unwell when I was like taking overdoses and stuff, obviously that’s a huge impact on your mental health. But I think there, there are many ways that experiencing mental health problems or psychosis can, you know, affect the mental health like your energy levels can be poor. Your sleep can be poor. Your diet. Smoking, drugs, alcohol people that have psychosis are three times more likely to smoke. There’s many things. So I do, there is a million percent, a correlation there. But I don’t think it’s as easy as people think it is to overcome it. You know, when you’re when you’re having like 20 voices or something saying, ”You should go and die.’ You are not just, it’s like it’s not then easy to just go and sort your physical health out, even though good physical health can mean better mental health and good mental health can mean better physical health. It’s like getting to that stage is difficult.

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 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.

Okay, so you’re training now to be a mental health nurse. What’s that like?

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.

I think people were mainly confused as well. The first person I told was a friend. She wasn’st she was okay at the time. She was just like, ”Oh, I, I don’t understand it, but you know, I’m here for you.’ But then she started to spread rumours around my school like, oh, Nikki is like a bit, you know, weird, crazy. You shouldn’st be friends with her. Like she’s just too weird. Just don’st be friends with her. And I just suddenly noticed like people not talking to me and avoiding me. And then I was just like, you know, must be something I’ve done and I didn’t really know until someone told me that the rumours had been spread. I just thought it was something I did. And then I was just like this is ridiculous and you know, but I just kind of accepted it, ’cause I felt like she was my only friend. So, that was difficult.

Do you think your experience of psychosis has affected your friendships?

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.

There’s a charity that I got in touch with that’s kind of for young people that hear voices. And they were really great. It’s run by a wonderful person that’s had experience of hearing voices themselves. And it was through meeting them that like really really helped. Like they, they shared a lot of coping strategies with me, you know, they didn’t judge me. They helped me to feel more okay about it. I wasn’t judging myself any more. That was like the biggest stepping stone for me, but then, it was about, talking about it with people and people, you know, accepting it and not judging it. And meeting people, learning, you know, that you can live with it. You can learn to manage it. Doesn’t have to stop everything. It was mainly that realisation for me that really helped. It was and using it as a good thing. And from that that was what’s helped me to be able to then go on and achieve things like, doing volunteering with charities and campaigning like to politicians, celebrities, whatever about like mental health awareness challenging stigma and discrimination, because that’s something I’ve experienced a lot of. So it’s been good.

I’ve had input from school counsellors charity services like counselling and stuff. Child and adolescent mental health services, GPs, inpatient services A&E services. Specialist care services. Like basically all sorts of services. The one that I found most useful was a therapy called, Dialetical Behaviour Therapy it wasn’t helpful in terms of the voices, but it was helpful in terms of managing emotions and things. And then that in turn helped me to manage the voices. But overall, I find that the thing that was most helpful to me is, it tends to be like charities and stuff, because they, you know, found out they’re less time constricted and you know, it just there are people there are there ’cause they really just want to do it. It’s not about having a job and getting money and stuff. But that’s not to say that the people that I saw in NHS services weren’t great. They, they were great, but the system in the NHS can, has a lot of flaws, yeah.

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.

My Godmum, my Godmum came with us and we went to this place [sigh]. When I got there, I just saw a massive massive walls in barbed wire and I was just like, what is this? [Laughs]. So honestly, what is this? It was a, we went inside I wasn’t allowed to like I got into the, the main entrance kind of bit. All doors were locked. My, I said, you know, I’m, I was sent here sort of thing. And a couple of people from the ward came and got me. And they said, ”Right, your, your dad and your Godmum has to go now. We are gonna take all your stuff. You can’t wear your rings we are gonna check for everything like all that sort of stuff.’ And I was actually terrified, ’cause I didn’t know what a mental health hospital was. I’d only known what general hospitals were like and I thought it was gonna be similar. I was not prepared at all and then I got there and they were just like, right, your dad may have to go and we are gonna have your stuff right cool, come with us and I’m just like, what?

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’st 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.

So what was that one?

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.

But I found that I got a lot of help when I was a day patient at, at an inpatient unit. And I did that for six months. And I went there every single day for six months. And this was two hours away on the bus. I had to get the bus there, took me two hours and then the bus back took another two hours. So I was travelling for four hours to be at this day patient place all day to go back again and it was so long. But it was helpful, because they had a lot of different things going on and they I saw someone all the time and it was that, that was—I think, I felt that that, I felt that that was the thing that made me able enough to have the therapy that I had and for it to help.

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.

And did you have experience of child and adolescent as well as adult services?

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.

I did a drawing and I drew myself and then all these speech bubbles around it. And I showed the school counsellor that I was seeing and I said, ”I don’t know what this is, but this is what it’s like in my head.’ And she said, ”You know, it seems to me like you’re hearing voices and experiencing that.’ And I was just like, ”I don’st know what that is.’ And she kind of like tried to explain it a bit, but you know, I had to go back to lessons and stuff. And she referred me to the child and adolescent mental health services. I’d already been referred to them at that point, but they said that I wasn’t severe enough. So she referred me again and then they assessed me and that’s when I started to realise, you know, this is like this is an actual thing that people have heard of before. And, you know, these voices that I’m hearing aren’t, other people can’t hear them. So it’s something that I’m experiencing.

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.

So like when you hear voices, it’s a really really weird experience. You know that other people can’t hear it, ’cause they’re not reacting to it. But, you wonder why other people can’t hear it. And you are like wondering where the source is and you’re looking round like where, where is this coming from? And, it’s impossible to really concentrate on anything else. And it’s loud and it’s annoying and it’s intense and it’s hard. And it’s not until you start to speak about them and learn coping strategies for them that you learn to manage them in a healthy way. It is just really difficult. I can’t remember what I was gonna say next. Having visual things, that that’s difficult as well. ‘Cause and like and the beliefs that you can sometimes get is just it’s so convincing that you don’t know where reality is and where it’s not, yeah.

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’sll 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.

Well one of my first admissions they wrote, they had on a piece of paper, basically, I was on one to one with a staff member, which means they had to stay with you all the time. And on their piece of paper, it had a tick box next to schizophrenia and it was ticked. So I was like, you know, oh, that’s what I have. And then, and then, I told my dad I was just like they said I have schizophrenia. And then, and you know, my dad asked and there was this like, no, no, no, she’s making that up. And it was, so it, but then, I asked someone else and then they said, yeah, yeah, that’s what we think. But then they didn’t make up their mind so I was just kind of left thinking, I don’t know what’s wrong with me. And then I went to a different hospital they said I have borderline personality disorder. And then, gradually, kind of extra diagnosis just kind of added on like recurring depression, social anxiety, post traumatic distress disorder, that sort of thing.

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.

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’sre, 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.

I did a drawing and I drew myself and then all these speech bubbles around it. And I showed the school counsellor that I was seeing and I said, ”I don’t know what this is, but this is what it’s like in my head.’ And she said, ”You know, it seems to me like you’re hearing voices and experiencing that.’ And I was just like, ”I don’st know what that is.’ And she kind of like tried to explain it a bit, but you know, I had to go back to lessons and stuff. And she referred me to the child and adolescent mental health services. I’d already been referred to them at that point, but they said that I wasn’t severe enough. So she referred me again and then they assessed me and that’s when I started to realise, you know, this is like this is an actual thing that people have heard of before. And, you know, these voices that I’m hearing aren’t, other people can’t hear them. So it’s something that I’m experiencing.

Yeah ’cause when I turned 14, there was a traumatic event and that really shook me up a lot.

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’st 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.

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’st 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.