Dolly - Interview 08

Age at interview: 39

Age at diagnosis: 22

Brief Outline: Dolly was born in London and had a difficult childhood. She describes her voices as coming 'out of the blue', taking her from 'nothing' to 'completely psychotic'. She spent time in an in-patient ward and it took 7 years to get the right medication.

Background: Dolly is studying film, is single with no children and involved with the service user movement. Dolly heard voices at the age of 14 and in her early 20s was diagnosed with schizophrenia. Now she lives by the sea and doesn't take psychiatric medication. Ethnic background' White Mixed Asian.

More about me...

Dolly was born in London and was the eldest of five kids. She says that her childhood was not very happy, as her Dad was alcoholic and quite abusive. However, because she was close to her brothers and sisters, she looks back on that time with ‘fondness’. At school she was academically gifted and voted most likely to succeed.

 

Dolly describes her voices as coming ‘out of the blue’, as she was listening to tapes. She was scared and unplugged the radio, but the voice was still there. Looking back she can see this was the beginning of her psychosis, but at the time she thought there was a devil in the room with her. When the voice came back, it was constant and talked ‘for hours and hours’; she thought that the TV was ‘trying to control [her] thinking’. Dolly describes how, in a short period of time, she went from ‘having nothing’ to ‘totally psychotic’. A week later she tried to kill herself. It wasn’t until her early twenties that she thought this might be psychosis and not ‘spiritual’. Dolly stopped going to school because she became scared and paranoid, and social services contacted the family. Dolly saw a child psychiatrist whom she described as ‘awful’. She asked her if she was ‘hearing things that nobody else could hear’ but Dolly didn’t trust her and said ‘No’. The way Dolly dealt with the situation was to self-harm and withdraw completely from people.

 

After she made two suicide attempts in her early twenties, her Mum persuaded her to see the doctor, who prescribed anti-depressants. She had a six-week course of counselling which she felt ‘let down’ by, as it was too short. She felt that talking about her problems didn’t really help as it wasn’t ‘tackling anything on a practical level’. Dolly then found herself so depressed she wasn’t talking. She got re-referred to mental health services and was assigned a CPN with whom she built up a bit of trust. She told him she was hearing voices and was prescribed anti-psychotic medication. That didn’t help as Dolly said it took seven years to get the right medication; she still felt heavily sedated and ‘zombified’ but was still hearing and seeing things. Dolly felt lonely and passive in her 20s. She finds it hard to recall this time in her life and says it doesn’t ‘feel like her life’. She remembers being admitted to the ward and being ‘ignored’. During her first time in hospital she was in a mixed ward with men who were aggressive and wanted sexual favours. She remembers initially not being heavily medicated and extremely bored. The only support she recalls was from the other patients who comforted her and told her the ‘tricks of the trade’ to get out of hospital as soon as possible. Dolly said to hospital staff that she wasn’t paranoid and wasn’t hearing voices and was discharged. She went back to the family home, where she described her Dad making fun of her, and making her worse. Dolly’s CPN told her that she wasn’t better and spotted she had lied, so she went back to hospital, this time a little less scared. Dolly describes how she went into hospital ‘very paranoid and miserable and left hospital just miserable’. Dolly experienced very critical and damaging voices saying ‘Why are you alive? You’re stupid’. Dolly says that it was only when she challenged the negative thinking that the quality of the voices changed. Dolly had an interest in Buddhism and that helped challenge the negative thinking. She got back into writing as something to do, and also tried to conquer her social phobia. She went to a coffee morning for a mental health group to build up her social skills. Dolly heard about the Hearing Voices Network and started attending a group. She also attended a User Voice group. She started writing and publishing, and then performing her poetry on stage. Dolly describes forgiving her Dad the ‘biggest positive impact’. Now she still hears voices and sees things but it’s ‘lost its power’ and is just an ‘annoyance’. Dolly likes to do creative things, is a published author, and does painting and a studies for a film degree. Having structure and living by the sea also helps with the stress and anxiety. Mainly she has found people have reacted positively to her experiences, with the exception of one neighbour who reacted badly when she read about Dolly’s story in the local paper. Dolly currently lives by the sea and wants to encourage a strong service user movement.

 

Dolly also took part in the Healthtalkonline website on Mental health' Ethnic minorities experiences to visit this website and see more of Dolly’s story click here.

Dolly was terrified when first hearing voices while listening to a tape player. Within a week she thought she was being chased by the devil and tried to kill herself.

Basically I was recording some music off the, off the off the radio, and suddenly I started to hear a kind another voice, apart from the person speaking on the radio and it was quite deep and it was quite gravely and it, it was, kind of, almost sounded a bit demonic. And I th…First of all, it just, it started just for you know, a couple of seconds, then it went, and I thought may be there was a bit of, kind of interference on the radio. But then it was kind of, directed at me, it was going, “Dolly, I can see you. I’m watching you.” And I got so scared. And I unplugged the radio. But I could still hear, this, this voice. And it, it just... to me, I mean now, I know, it was the beginning of my psychosis, but I actually thought, there was, you know, there was a devil in the room with me. And it was speaking to me.

And about fifteen minutes, this was about, it happened for about fifteen minutes, and then it kind of faded away. And... well, for the rest of the day, I had nothing. And I thought I didn’t know what it was. I was really upset by it, but I just thought, I thought it had gone. But like the next day it came back.

 

And this time it was like a constant kind of being talked at. You know, like hours and hours, and not only that my thinking started to get strange. I thought people, like on TV were directing kind of, or kind of trying to control my thinking. It was very, in a short period if time, I would say about a week, I went from just having nothing to be kind of totally psychotic, and in fact because I thought I was basically.

This is what I thought at the time, that I was being taken over by demons. I kind of, just a week later, I tried to kill myself. It was just, you know, that one week of just having nothing and then just being a person who thought she was, you know, being chased by the devil and wanted to kind of ruin my life. It was, the onset was really, really quick and fast and just total, to me, and totally out of the blue really. 

Reducing stress levels helps Dolly with her voices.

I mean it hasn’t gone away. I still have, have the voices. And I still see things, but it’s, to me it has just lost it’s power basically, it’s just an annoyance rather than something that, well it did used to take over my life and nearly killed me actually, but now it’s just, it’s just an annoyance. It’s, you know, a bit like having kind of bunion [laughs]. Yes, a mental bunion that’s it. Rather than you know, feeling like it was it as a cancer. It’s, that’s the difference really.

 

That’s a good metaphor for it actually.

 

[laughs] Yes, it’s a mental bunion. I mean uncomfortable, yes, but it ain’t going to kill me.

 

So how do you cope with this bunion on an everyday basis?

 

Well I like to keep my mind active. So I like to kind of kind of, do a lot of creative stuff. I love to paint, and I love to write. And I love to make music. And also you know, having a bit of a structure to my life has really helped. So actually my going to university really helped. And to kind of be close to nature, which is one of the reasons I moved down to [name of town] because I love the sea. And if there is a time I feel a bit like anxious or stressed or like a kind of you know, not mentally comfortable. I just have to walk across the sea and I just put things into perspective really.

 

Just, I think the biggest thing just is to be kind of myself and realise you know, negative, negativity is... is a kind of thing, this kind of... well the negativity will turn the bunion into a cancer, you know, I mean it’s, it’s... it’s protecting the, you know, … I don’t know how I got onto bunions but … [laughs] but it’s just realising certain parts of yourself need protecting and looking after and just to realise I have to reduce stress. Because when my stress levels are really high then the psychosis is more troublesome, you know. For example last, last year there was a... quite a lot of stress stressful things happening, and it did bring up the, the kind of, the voices were more constant, for example.

 

So I’m just saying I have to bring down stress levels. And just, well kind of going back to the, the bunion kind of metaphor, it’s the choice that we’re in, you know, comfortable shoes, or the stilettos of negativity really.

 

That’s a pretty weird metaphor for it, but I think you guess what I mean. Yes. So it’s just.. kind of just having self-belief. Doing positive things with your life, kind of... keeping occupied is, you know, is really helpful. Kind of learning to develop your emotions, you know, your emotional life.

 

And you know, I guess there’s lots and lots of things that are helpful. There’s not one thing I can really pinpoint. Laughing is you know, really helpful.  

Dolly talks about her family finding out about her experiences.

Well although I had since these experiences, I was 14. I didn’t tell my family even about it until I was in my thirties. And actually I, you wouldn’t tell them verbally. I wrote about it in my book, that I, you know, have written. And, most of my family read it. It was only then that they realised what was happening. And it was, I, that was, I was scared actually what they would think. And it was really nice that they, you know, picked up the phone and said, “Why didn’t you tell us at the time, you know? We were wondering what was going on with you, you know.” And actually, because they knew what was going on, we became closer, they didn’t reject me at all. You know, it was just explained so many things, you know. So they all know about it. Because my Mum is quite, can’t really read or write properly. She couldn’t read the book, but I did tell her what had happened. And she got a bit upset, but now she’s okay about it. you know, you know, there are certain parts of my family are not okay about it. And I think it’s kind of cultural. Because my Dad is Indian and there are kind of a lot of shameful things within the fam… the Asian community and one of them is being, you know, mental illness. So they were saying, “Oh you haven’t got that. You haven’t got that.” And they are quite religious as well, so they just kept wanting, wanted to take me to the church to be healed and I’d be fine. And actually, what was really dangerous, one of them did say, “It is the devil.” You know, not the right thing to say to somebody. They actually believed it. So yes, that part of it has been painful. But because I have kind of, have written about my experiences in a book, and kind of talked to the media about it, you know, more people know that I have these experiences than not, and you know, I have to say the majority of people have been okay about it. I have to say. Although I have been spat at. I had neighbour who read an article about me in the local paper, just totally going, you know, from saying hello to me in the morning, just totally turned on me and threw eggs at my door, and kind of was really verbally abusive. 

 

So I actually, the, I tried to ignore it at first. But then I said it can’t be ignored, because it’s not stopping. So I said to her, “Why are you doing this?” And she said something else, quite I thought a bit funny. She said, “Oh you’re dangerous.” I said, “What, well can I just bring up two points. One don’t you think your behaviour now by throwing eggs at my door and being verbally abusive is dangerous? I’m not doing these things and secondly, you have known me for like five years and have I ever, ever brought up any kind of concerns? Have I ever done something very irrational?” “No.” So I said, “Why have you changed, why has your perception changed? Why aren’t you judging me from what I am and not what your what your kind of assumption is about mental illness?” It stopped. I mean she still didn’t speak to me, but the abuse stopped. 

 

Dolly was on a mixed ward where some men wanted sexual favours from the women.

Can you remember being in hospital?

 

I , well I remember the first time I was in hospital. It was horrible because it was a mixed, a mixed ward and you know, a couple of the guys were really aggressive and wanting kind of, you know, sexual favours. And I did think that the time that these, you know, women are at their most vulnerable. You know, especially the ones that were depressed and can’t even do anything, and having kind of guys being quite aggressive about their sexual advances, you know. How is that supposed to be therapeutic to the person?

 

Yes, that was the only interaction you had with the nurses was during the medication time.

 

So, you know, the boredom of just sitting. All you had to, because I was on a four-bedded bay unit, with no privacy. The only thing to do was to watch TV really. And... and what made it worse the TV wasn’t even properly tuned so … it’s just. But there’s so many cases, they don’t know, they stare at the, you know, things, and not really absorb it. But I wasn’t really very heavily medicated for the first few days and I was as bored as hell really, and I thought if I was going to spend any more time in that, you know, in that ward, I would be really, you know, literally rot away. But I kind of got, the only kind of really support I have to say I got was from the other patients. So you know, there was many a time I was crying on the ward and no nurse came to comfort me. It was you know, for the patient. And there was one lady, I’ll never forget this, she went, she saw that I was crying, she went out, to the kind of drinks machine and she bought me back a can of Cola to cheer me up. And I thought that was just so sweet, and when you’re feel very like, vulnerable and very alone, and attacks, that kind of little bit of humanness and a little bit of compassion makes all the difference. So you know, that’s what I …

 

And then, you know, they told me, me the, you know, like the tricks of the trade [laughs].

 

Tell me about these?

 

Oh stuff like, you know, what you should say to get out as quickly as possible. Which I did, you know. Basically they said, “Just lie, about how you feel. Lie through your teeth. Tell them, if they ask you can hear things, say no. You know, if they ask you if you’re paranoid, no. I’m fine.” And that is exactly what I did. Like I think, my second ward round. I said, “Oh I’m fine. It was just a bit of stress I was going through.” And they discharged me.  

Dolly felt that when she was on antipsychotic medication she had no contact with her emotions and kept going to sleep.

Well basically... I mean it was just, it was, I mean it was awful. You just felt like you had no contact with your emotions. You had no contact with your thinking. And one medication I was on, I just kept, literally just nodding off to sleep. Even if I were on a bus. And I did nod off to sleep on a bus, and somebody stole my bag. So I said to the doctor, “I can’t be on this medication. This is what it’s doing to me.” And he said, “Well, you know, you look calmer when you are on it.” [Laughs].

 

And you looked very calm when your bag was stolen?

 

[Laughs] Yes, I was so calm, I can’t stay awake, so, not helpful, and still going through the kind of the distress actually.

Dolly found quietiapine helped her, but can't think of one part of her body that hasn't been affected by medication.

It was actually medication called quietiapine that the voices started to just die down a little bit, and my paranoid thinking, kind of lessened as well. It didn’t go away a hundred per cent, but it actually, it had like an obviously effect for the better, taking that medication, yes.

And what’s been your experience of side effects other than this sort of sleepiness?

Well I’ve kind of, a lot of I mean I can’t think of one part of my body that hasn’t really been affected by a side, you know, side effect. For example, blurred vision. You can, you know, I love reading and writing. If I can’t do that, why, you know. Just having you know, what. I remember there was one medication that used to make me drool. That’s why I think it’s really interesting people think. They associate certain physical character, characteristics, like the shuffling and the drooling as signs of madness and it isn’t, it’s signs of medication. And you know, I just remember just drooling all the time, and they say, “Oh its just a little thing.” You know, the doctors are saying. You know, just ignore it. I said, “How can I ignore it, every time I speak to people they are looking at my dribble.” You know. I mean, I... there was one medication that I took that, you know, was doing things to my liver, my doctor was telling me. So they took me off of it.

Can you remember what that was?

I…There was something, is it, I don’t know if it’s they’re called electrolytes or something in my liver, was you know, really, really quite high. And I had problems with kidney, kidney functioning at one point. And I now am having, well the last couple of years I had seizures but the doctors don’t know whether that’s to do with the medication I taken, I’ve taken or if it’s, you know, another, another kind of cause. But it’s funny that my, I’ve got two sets of friends. I’ve got the friends that are in the system, and the friends who are not, around my age. And most of my friends in the system have got physical health issues, like diabetes, you know, and they usually are much larger people then my friends who are not. And I’m sure, you know, I know I actually know certain medications make you more prone to having diabetes. And they’ve got shorter life spans as well. Which is, well, they some people say like it’s the mental illness, but, you know, you can all sort of argue it’s also the medication. No it’s a very kind of difficult subject area. Because I can see how it helps so many people, medication. But I also can see it, it might not be the thing for other people, and it might be doing them more damage actually.

Dolly found CBT helpful, practical and good at challenging ways of thinking, but didn't like psychotherapy.

Have you ever had any talking therapy? You said you had this sort of six-week session earlier on.

 

I’ve had two kind of different talking therapies. I’ve had CBT, which I actually found really useful, actually. Because it was, it kind of mapped out my thinking.

 

Yes, kind of, just, it mapped up my thinking and it showed me where I, what kind of thinking, helped me go into a psychotic state really. For example when I was paranoid.

 

For example, you know, just thinking of one of the things we did step by step. Oh yes, I can think of one. You know, say if I was stressed I would act a bit differently. I’d may be, be a bit withdrawn. And because I act, I am different, people will react differently to me, but I’d not seen that react .. their reaction to me. I’m seeing they’re reaction for some, some other reason. And I begin to become paranoid and I, because I think they are up to something I start to get a bit defensive with them, and, and that’ll cause them to say things and in a way which I found as proof of my kind of paranoia that they’re out to get me. And basically, it was just saying, why are you thinking like that? Why do you believe that? Is it possible that it could be for another reason. So that, just that kind of thing has been really helpful.

 

Also I had psychotherapy which was not helpful at all. I didn’t find psychotherapy helpful. I’m not sure quite, because I know it’s been helpful to sort of some friends of mine, but not helpful for me. And that just kind of going over the, the past really. It’s not helpful if you know, you have problems in the present. And, the therapist says it’s because of what happened in the past. I know that. You know, I already know that. I mean how do I deal with it. That’s what I mean. And also they’ll say something like, “Well it’s something you have to come to …” I said, “Why are you here then? Go away.” You know [small laugh]. It, I don’t know may be it’s, it’s just, I mean, you can’t one thing to work for everybody, you know, it was probably helpful sort of to somebody, but psychotherapy wasn’t helpful for me at all. I usually came out depressed from it, have a session.

Dolly found that her recovery was a slow process involving many things over time.

And for example, you know the Hearing Voices Movement has been going on for quite a while. You know, it started off in Holland. And basically when... they did… one of the things they say is, it’s your voices are always telling... are always, are always messengers basically about your, the state of your mind, your state of your life, your state of your soul. And you should listen to them really. See what are they, what are they saying to you. And why are they saying this to you. And it was only like, because I remember one of the exercises was write down [3 sec pause] what the voices are saying to you. So I did write them down, and you know, funnily enough, just a couple of days lat… later, I had my Dad to say those exact same things to me. And I sort put of two, you know, kind of put two and two together, and thought, you know. And once I kind of understood that, it was, it had some kind of link to my past. I felt I had more control over it. But it wasn’t, it wasn’t kind of a, you know, an ambiguous, you know, mess that I couldn’t hold on to. I could see that, basically I could see the logic in it. 

 

So it works?

 

Yes. So... no as I say, it’s stuff like just saying my Dad isn’t a happy man. He’s very, very unhappy. So, you know, he’s telling himself these things as well. And look what it’s done to him. Do I, and basically I said to myself, do I have to listen to that. Why am I listening to that? Why am I taking it as truth. So... it was kind of understanding that, what the, just to see. How I could change my thinking and how I could control the emotion, the emotions that were, that were quite negative at the time. And basically not in a kind of critical way, because I unders… I also understand, you know, if you’re critical about yourself. That’s actually counter productive. Just to see that you’re, to have kind of compassion for yourself and realise you’re doing the best you can. And as long as you do one thing positive in your life, you’re doing the right thing basically. Not to be kind of hard on yourself. So that, it was, like many, many kind of strands just coming together, and just, you know, over the space of a few years. Just having that self belief you know to write, and then submitting it to publishers and getting it published, gave me more confidence, so I would, I would because I was also writing poetry and said well may be I can perform my poetry. And people said, “Don’t be so stupid Dolly. You know, you’ve got social phobia remember?” And I said, “Well I won’t know until I try.” So and it’s funny always, it’s, you know, I don’t know if it’s true of everyone, but when I need a certain person in my life, they arrive on the scene. So I met this Dutc.. well British poet, but he lived in Holland. And he got, he said, “Come to Holland and perform some poetry.” I said, “I haven’t done it before.” And he said, “So?” So I went over there, you know, and before I performed my poetry I was really scared. I wanted to come home. But he literally, he’s a big guy, he lifted me up and threw me on the stage and said, “Perform.” And I did perform and I loved it actually.

 

Oh fantastic.

 

Yes. So, there’s the having a bit more confidence. That really helps and actually forgiving my Dad was the biggest, I think the biggest positive impact that had on my kind of life. Because I realised he owned my life, I didn’t forgive him... Because I remember somebody saying this to me, and it’s always stuck in my head, is, “If you’re bitter about something, you’re poisoning yourself and hoping the other person is going to get ill from it. But you’re doing the poisoning to yourself.” So understanding you know, being bitter about things is actually poisonous to the soul. Hating somebody is you’re not, you know, you’ve given the power to that person you hate. Not that you don’t own it. Yes, it’s a very kind of slow process of lots of things. Actually what I think it is, it’s just a slow process of learning how to be human. But as kind of really helps, helps me. Not seeing that, you know, the psychosis as you know, a kind of symptom or illness that can only be medicated. But to see that it’s actually part of being human.

Dolly thinks that having a diagnosis of schizophrenia shouldn't affect your dreams.

I would say to them, I know it’s really frightening at the moment for you, and you don’t know what’s happening and you know, and it’s affecting everything in your life, you know, the way your family are with you. You know, you’re you know what you want to do with your life. It affects everything. And it, I want, basically what I want to say is that don’t stop having your dreams basically, because if, you know, well what I basically want to say is, it’s going to be hard, your road is harder than it is, you know, for everyone else. But you know, you can still travel to wherever you want to go. It’s just, it’s going to be harder. And they’ll be times you feel like giving up, but you should never give up hope, because you know, I was told that I would end up in Broadmoor or dead, and if I believed that, I would, I would have ended up in Broadmoor or dead, but I chose to believe that I can make something of my life, and this, this, you know, this psychosis or schizophrenia or whatever you want to call it could have taken over my life, but  underneath all that there’s.. I’m still Dolly, you know, and I’ve got my dreams, and you know, I’ve got things I want to do with my life. And you shouldn’t let it, you know, it stop your life. You shouldn’t let it stop your dreams. And basically it’s like being, you know, it’s like mountain climbing as well. We have higher mountains to climb than everyone else, but because we are, our mountains are once we reach the top, we are higher than everyone else. We see more, and learn more about being human than anyone else. Well basically what I’m saying is, who wants an easy life, because you don’t … well I actually do want an easy life, but if you can’t have an easy life, see the goodness in that fact that you can learn patience, you can learn compassion out of it. You can learn that despite having barriers in your life, you can do anything you want. That’s what I would say.

Dolly had been crying on a ward, and no nurse came to comfort her but another patient bought her a drink to cheer her up.

I kind of got, the only kind of really support I have to say I got was from the other patients. So you know, there was many a time I was crying on the ward and no nurse came to comfort me. It was you know, for the patient. And there was one lady, I’ll never forget this, she went, she saw that I was crying, she went out, to the kind of drinks machine and she bought me back a can of Cola to cheer me up. And I thought that was just so sweet, and when you’re feel very like, vulnerable and very alone, and attacks, that kind of little bit of humanness and a little bit of compassion makes all the difference.