Emily

Age at interview: 23

Age at diagnosis: 21

Brief Outline: Emily started having unusual thoughts at the age of 11 and heard voices for the first time when she was 14. She has had two hospital stays and although her psychosis is worse than when she was younger she now feels better able to manage it.

Background: Emily is white British.

More about me...

Emily remembers when she was 11 years old starting to feel very anxious after her parents went away to China for a short period. She began having flashes of thoughts that were violent and unlike her usual thoughts. When she was 14 she was sitting in a class at school and heard a voice for the first time. The voices she heard from then on were always negative, telling her she was fat, or saying she should self-harm or kill herself. Emily describes it as like “being in an abusive relationship with yourself”. Emily stopped attending school and studied from home, which she found suited her better.

When she finished school, Emily went to college, but found that her mental health “got in the way” and she left after a month. She worked in a hotel and then in a shop but as she progressed in each job she was asked to take on more challenging work and her managers didn’t understand her mental health needs. Emily was eventually signed off work. She began drinking more and taking drugs to try and cope with her symptoms. 

Emily found it difficult to speak about her voices and was worried others would think she was “mad” so she didn’t tell anyone about the voices until she was 19. She first spoke about it in detail to her mother, who has supported her through her experiences. She started seeing a psychologist after that but her psychosis was getting worse as was her drinking and use of recreational drugs. The psychologist could see that she needed more help and got her referred to a hospital.

Her first experience of hospitalisation was “terrifying” and although she went in voluntarily she was sectioned for her own safety. It was during her first hospitalisation that she first started having visual hallucinations and hearing voices “outside” of her head. However, over time she felt better and she made many good friends who she could talk to about her voices because they understood.

Emily was given a diagnosis of borderline-personality disorder. She was prescribed quetiapine (anti-psychotic) and diazepam (benzodiazepine), and takes other medications for anxiety. She thinks she’s on too much medication and gets the side effects of medication but it’s hard to say if they are having an effect. However, she does take them because she thinks the voices might be worse if she stops.  

When she was discharged from hospital Emily entered supported living accommodation. The staff were always checking on her and she found this too intense. Within eight months of leaving hospital her self-harming got worse and she overdosed on six or seven occasions, once pouring petrol on herself. Emily was admitted to hospital again and remained there for ten months. During this hospital stay she attended a living skills course and learnt coping techniques such as mindfulness which made her feel she could help herself. Although the psychosis is worse than it was before, Emily feels that she is now more open about it and better able to deal with it. 

Emily hates being on benefits and wants to work. In the past she wanted to join the army but was not able to because of her mental health history. In the future she would like to work in mental health because she wants to share her own experiences to help others.

When Emily first heard a voice, she was sitting in a classroom and turned around to ask her friends if they had heard it too.

I remember like it was yesterday, 'cos it was so weird. I remember sat in a classroom, I think we were doing religious education and I was sat with my friends and all of a sudden out of nowhere, something just said to me, kill yourself. And I sort of, it didn't, it's not, it wasn't my voice, it's like a different voice, female voice. And I thought it was my friend messing around or being nasty. Looked around and everyone was sat down still writing and I said to my mate, did you hear that? She went what? And I said, did you not hear what they said? Thinking someone was picking on us. And they just went, looked at me as if I was like on a different planet. So I was just sort of sat there for a minute and I ended up getting told off, because I was so distracted, they thought I was just messing around. But I just remember a feeling. So, like strange and sort of thinking, oh god, you know, it's happening to me. 'Cos I knew what it was like with my dad, you know, when he got ill. So I just sat there and thought, oh, no, you know, not me I don't, I don't want that. But obviously I had no choice, it just happened. 

Emily was “distraught” when EIP services said they couldn’t help her. She was self-harming, hearing voices and facing homelessness when her psychologist helped her to get admitted to hospital.

Just sort of thinking about the help that you've received from the CMHT, Community Mental Health Team. Were you seeing CAMHS before that?

Yeah, when I was younger I saw them.

But not about the psychosis. 

No, I never talked about that.

Talked about it, yeah. Did you see it's like an early intervention team?

Yeah, I saw EIP when I was living with my sister. That was before I went into hospital and they came to my house and they asked me questions about it. And I think because I wasn't schizophrenic or anything, I didn't have that diagnosis. They just looked at me and said, we can't help you. I remember I was so like distraught after, because I thought, finally, these people know about psychosis. They can help me. But they just, they said, they can't help me at all. I was hysterical. It was horrible. So I just thought, no-one can help me. I am on my own.

So you hadn't had the diagnosis of the borderline personality disorder then?

No. That was before my first admission to hospital. So it was before all of that happened they came and saw me.

What age were you then?

I would have been about 19, 20, just before.

And you were talking to them about the voices?

Yeah, they asked me questions about what they said and what it's like if I watch TV. If it's like people talk to you. And I was, I was really open with them, because I thought I needed to be. I can't keep lying. So I thought, if I'm completely open they can help me. But they just said they couldn't do anything. 

Just to sort of get the chronology, then you, so they hadn't helped. And then you talk about them going into hospital the first time?

Yeah. 

Was that when you sort of been turning to drink and then—

Yeah, that was after. Yeah, after I saw EIP that's when I started getting really bad. And I was seeing the psychologist and then, yeah, that was before my first admission. 

Then it was the psychologist that helped to get you to hospital.

Yeah, she put me in. I went to see her for an appointment one day and it was the last day that I could have stayed in the hotel that I was living in. And I was just gonna run. My mum said to her, you know, you need to do something or I'm gonna lose her. 'Cos I would have just left and I'd probably still be out there now. But she got me into hospital the first time and it was, I was safe. You know, I couldn't hurt myself. And I learned a bit more about everything and got my diagnosis. 

Emily self-harmed and attempted suicide when she was in hospital. While she was there she learned a lot about how to control her voices, but also started hearing external voices for the first time.

My self-harm was out of control. They just couldn't handle me where I lived. I tried to set myself on fire, which caused two of the members of staff to be signed off, 'cos it was so traumatising to them. So they just said to me, they can't do anything. So, I had to go back into hospital. And they told me I'd be there for a couple of weeks just in crisis. And then, I'd go back to where I was living. But, it just didn't work out, because I went back there for a few visits. And when I was there, I took an overdose again. And had to go up the [hospital] and they just said to me, they can't have me back even though they were supposed to be trained and that and they was 24/7 support. Just couldn't cope with it. So I ended being in hospital for ten months and but I learned a lot. I made new friends there and I learned a lot about my voices and how to control them and try not to listen to them all the time. But when I was in there, I [clears throat] started getting like I've, I've always like internal voices so like someone inside my head telling me what to do. I started hearing voices outside as well and I'd hear like, I'd listen to music and it would sound like they were talking to me. 

Emily went into hospital voluntarily but then was sectioned.

I was, I went in there informally. But after a little while they sectioned me to keep me safe and keep me from leaving when I shouldn't, really. 

Was that the same the first time?

When I went in the first time I was informal, yeah and then I got sectioned. 

What was that like for you that process of getting sectioned?

It's weird, 'cos when I thought of being sectioned before, I thought it meant, you know, not allowed out, straightjackets and all that sort of thing. But they do it, the way it's done is quite well done, to be honest. They phone like your next of kin and ask what they think and so they phoned my mum and talked to her about it and what she thought was best. And then you go in there and you've got two AMHPs I think they're called. Yeah, Acute Mental Health Practitioner or something. And then you've got the psychiatrist in there. And there's also a nurse who sits next to you and so you've got these three people in front of you and they ask you questions about what's going on and you'd say about the voices and what you are seeing. They'd say, you know, what would you do if you left hospital and you would probably say like I'm gonna kill myself, you know. I remember arguing with them saying, it's not their choice. It was my choice. But because of that, that's when they sectioned me. And I was on a section for about seven months I think in total. 

And at the time do you remember how that sort of seemed to you and how it felt?

It made everything worse for me, because you knew you couldn't escape the hospital. And even though they were there to help there is 21 other patients who have their own problems. There, there was a lady who would just scream all day. There was other ladies who would throw chairs. And you'd see people self-harming. And, I mean, I saw one lady ligaturing in the garden once. So it's hard to cope with that on top of everything you were dealing with already, because you've got these voices in your head and you are seeing things that no-one else can see, but then you've got this other people who are actually there, screaming and it just adds to everything. And sometimes it's like the worst place to be if you've got a mental illness.

Although she is “not the sort” to go to groups, Emily finds having friends with similar experiences is really helpful.

I am not really the sort of person to go to groups and talk about my experience. I mean, this is the first time I've ever actually talked about it to people other than my family and like psychiatrists. I think I'm starting to get to the point now where I would go and see what it was like and meet up with people with similar problems to me. 'Cos I think that's the most important thing is having friends that understand you. 'Cos it's all, my mum tries her hardest to understand. She's never gets angry with me if I'm ill or anything like that. But she can only understand to a certain degree, because she's never had it, whereas my friends that I met in hospital and people in support groups you sort of lean on each other and you think I'm sort of that's why I like peer support, because you help people, but you also learn yourself. I've never really been to a support group for myself. But I have done peer support with other people. 

Emily had bad experiences working in a hotel, shop and bank, where people didn’t understand her mental health needs. She says she would like to work in mental health, where she would be around people who understand.

No, haven't worked since I worked in that shop. I tried to work in a bank, but again, they were, they were terrible. They had no idea. I just lasted four days. One of the managers kept picking on me for things. Basically, they were trying to make me leave like choose to leave rather than them trying to get rid of me. So in the end, I was just, I thought, I'm not, I’m not gonna fight it. My mum wanted to fight them and you know, this isn't right. But I was just, I'd just had enough. So since then, I've done some volunteering, but I haven't done any paid work.

And do you think the future with work how would you go about managing that, so would, would you talk about your mental health to the people that were employing you or working with you?

Yeah, definitely. I would always explain it now, because then at least they know and then if, I mean, you can tell how they respond and whether you want to work there or not if you say you've got mental health problems and they go, okay, you know, we can do this to help you and that then it's fine. If they sort of go, oh well, you know, what sort of problems and they don't really understand that you know it's probably not the best place for you to work. But ideally, I would like to work in mental health myself, because then, you know, you are around people who understand it and they are not gonna go, you were off sick yesterday.

Working by herself in a hotel in housekeeping was fine for Emily but when she was asked to work on reception she worried about being able to concentrate because of her voices. When she took time off her co-workers thought she was just being lazy.

Yeah, I mean I worked at a hotel for a long time, working in housekeeping. That wasn't too bad, because you were by yourself, doing rooms. You didn't have any interaction with like the people staying there or didn't have much interaction with the other staff. So that was fine. And I could put the radio on in the room. But then I started working on reception and that's when it was like, I had to answer the phone and I'm thinking, oh my god, how am I gonna hear what someone's saying or listen to them or be able to talk to them if I've got voices going on in my head. So I'd get distracted and I'd make mistakes and I'd stop or like be ill and I wouldn't come in for a couple of weeks. And people just thought, just couldn't be bothered. They thought I was being lazy. And they always just sort of gave you that look like, you know, you’re just weird sort of thing. And I remember my, the manager was awful. She used to say to me, if I put something on Facebook like, I don't know, I'm sat in my room watching Disney films, she'd go like, ‘oh, so you’re not coming in tomorrow then, 'cos you are depressed’. And then I'd be like, no. And then I'd get to work and she would have actually got someone in to cover my shift, thinking I wouldn't turn up. But I did. So she’d just send me home and in the end I just thought, you know what, I can't do it any more. And then like I didn't work for a little while. 

Emily compares living in a residential home to living in supported housing where there is more freedom.

I've got a room, basically, in a house. And when I first started going into supported accommodation, it was strange, 'cos you had people up there, there was an office, it wasn't like a house. You had a bedroom, but you had the staff up in the office and you had one staff member sleeping in overnight and one that was awake. You know, they were always around like getting involved in what you were doing. They'd knock your door and they'd say, you know, come on you haven't been out of bed today and things like that. So, I can see why it would benefit some people, but because I didn't need help with things like cooking and cleaning, I could do all that, they couldn't really help me. I needed the help with the emotional side, the mental health side of things whereas they weren't trained in mental health, which was kind of weird, 'cos it was a house for mentally ill people. But yeah, they didn't really, they couldn't help me and they just ended up getting frustrated with me and that's how it started to go downhill. But I mean, I'm in supported accommodation again now and it's a lot more relaxed where I am. You know, you've got staff there, but they sit in the living room and they are just always about and you can just chat to 'em and it's not sort forced like, what are you doing? You haven't done this. It's just nice. You can just talk to them about anything. 

How did that change happen? Is that just different types, just it so happens that this other supported housing place was more relaxed or—

Yeah, I mean, the one I was in before, they call it a residential home. So it was more structured and things like that. But the one I'm in now, it's literally supported living, but you just rent a room. I mean, the council pay for it. It's just like renting a room in someone else's house, basically, but you've got the people there if you need 'em. They do your medication for you and come up, wake you up to do your meds and then they sort of leave you. But if they haven't seen you for a few hours, they'll come up and check on me. And it is, it's quite, in a way it's nice, 'cos you've got like that little comfort blanket. You know they're there. And, you know, sometimes they'll come up and they'll catch me self-harming and they'd confiscate the razor and they'll try and talk to me about it. But they don't push too much, as much as the other people. So I think they've learned, especially the place I'm in now, 'cos the first time I self-harmed they wouldn't leave me alone. And it caused me to get so worked up they had to phone an ambulance, 'cos my voice has got really bad and but since then, they've learned that, you know, I'm not gonna be dangerous. I've been doing it a long time. I know what I'm doing. They just let me have my space and come to them if I need to. So it's quite helpful, really.