Tom – Interview 23

After a long period of things not being ‘quite right’, Tom went from being a ‘model student’ to a ‘bad student’. Much later, he started hearing voices and was diagnosed with schizophrenia. He is now taking sulpiride and doing lots of music and painting and wants to make films.

Tom thinks that there was a long period before developing florid symptoms, and that he had depression when things just weren’t quite right in [his] life’. He went from being a model student’ doing his O’ levels to a bad student’ for his A’ levels. He did very little work, simply because he couldn’t. He went to music college after school but got kicked out’ because he couldn’t do any work. He was feeling both depressed and strange’, far away’ in a grey bubble’ not just sometimes but all the time’. His mum noticed that something was wrong’ quite early on, and thought Tom was going through the early stages of schizophrenia. Tom rejected this as the last thing you want to accept is that you’re going mad’. He refused to listen to what they were saying. His friends tried to persuade him to go to a day centre but he refused.

After this period he went to stay with his Dad in another city, and got various jobs that he couldn’t stick at. As his friends were going to university he went, and started studying Russian and philosophy. He couldn’t do any work there so got kicked out. He went back to his Dad’s and became stranger and stranger’ and got iller and iller’. He then moved to his Mum’s so he could attend a day centre, and it was some months later he started hearing voices. He told the doctors about this and was diagnosed with schizophrenia. He can remember feeling very upset’ but also quite relieved’ as he knew that something would be done about what was going on’.

From there he was admitted to hospital for about a month and put on chlorpromazine, which he found very sedating. He says that the hospital, an old Victorian asylum, was quite pleasant’ and he met a few nice people in there that he could relate to because they’d been through the same thing. For the first few years after his diagnosis he went from medication to medication, changing around’ and had some really bad ones. In particular with Depixol he was very zonked out’ and his throat constricted and he could hardly speak. His psychiatrist didn’t help him with this and he became wary of company. He found information through his psychiatrists, books and online. Doctors didn’t tell him much about schizophrenia, particularly the negative symptoms, so he found out more on his own. Tom also lost his sense of humour and ability to laugh, whereas prior to that he had been quite a humorous person’. He had two difficult years in which the side effects of the medicine were almost as bad as the illness itself. He also had one year without medication as he was into anti-psychiatry, but became seriously ill and experienced many delusions. He was in hospital for around a week at this time.

Tom went back to the day centre for rehabilitation and made friends with some people there. He moved out of his Mum’s and got a flat by himself. He taught himself to play the piano and that kept him going. He was only able to practise for small periods; likewise when he paints he tries to accept he can only do this for limited periods. Artistic activities have helped him considerably, as has his Mum, and he says that he doesn’t think he would have survived had it not been for her. His Dad and his friends also helped him through difficult periods. When he is worse he is unable to do music, but then when he is better he has more productive periods. He doesn’t feel able to hold down a full-time job because of his health.

Now he is on sulpiride and has fewer side effects than previously. He is now doing music and painting and wants to make films. He has been involved in awareness-raising.

Tom went from being a model student in his ‘o levels to being a bad student for his ‘A’ levels.

Age at interview 39

Gender Male

Age at diagnosis 21

Well, I was doing I was at school doing my o levels and then A’ levels so I, you know, from the age of sixteen seventeen eighteen and then I’d left school at eighteen and had and between then and my diagnosis and well, I actually had contact with mental health services about six months or so before I was diagnosed. And so between leaving school at eighteen and having contact with mental health services there was a period of about two, two and a bit years. And life, well, the thing the thing about schizophrenia, which I suffer from, there’s a long period of previous to schizophrenia where before the sort the, you get the florid symptoms, which is the voices etcetera. You usually get usually go through quite a long period of depression or where things just aren’t quite right, you know, in your life. So I went from being a model student in my o levels from, that was sort of the high water mark when I was about sixteen. Going, I just went downhill there. So I was quite a bad student really in my A’ levels. I’d, non-attendance, played truant a lot and I was even late for one of my own A’ levels and did very little work of any kind simply because I couldn’t. I was, you know, because, you know, it I think it does take, you know, years beforehand, you know, things aren’t quite right, you know. So things were difficult before I had contact with mental health services, yeah.

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Tom thinks recovery is not linear, and that it is whatever you are when you’re not badly ill.

Age at interview 39

Gender Male

Age at diagnosis 21

it’s just the, you know, if there’s black and white and then say, recovery is white and being ill is black. So it’s a ying and yang, it’s rather than rather a linear thing, more of a ying and a yang, you know, recovery is what you are when you’re not you’re not when you’re not very, you know, when you’re not floridly or badly ill. it’s just you’re still ill, you know, at whatever level of illness it is but you’re not you’re not in a crisis state. You know, you’re in a more manageable state and recovery is also possible with people with schizophrenia. It might take years. You know, I think half of the people who are diagnosed with schizophrenia, it burns itself out. After a certain amount of time and, unfortunately, for some people it deteriorates and gets worse. And for some people it just stays the same. I think it’s about a third of people that it stays the same, a third of people it gets worse. And third of people it just burns itself out. Roughly. So that that that’s also that’s also that’s also recovery I think, yeah.

So in those types of models, where would you position yourself?

I think just I well, it’s been twenty years now roughly so I don’t hold out much hope for it completely, to for complete recovery, you know, to for it to leave me. I don’t hold out much hope for that but I hold out hope that it won’t get any worse and that I’ll just have the odd episode every now and then. And it’s usually once or twice a year I’m sort of severely ill for a few days and then it gets back to more manageable levels.

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Tom was given chlorpromazine in hospital; this lessened the voices a bit, but was very sedative.

Age at interview 39

Gender Male

Age at diagnosis 21

Well, I was put on medication and I was I went to hospital for, not for not for, for about a month. Yeah, I went to hospital for a month and I was put on a course of medication [sniffs] called which was chlorpromazine at the time and a medicine for, to cope with the side effects of chlorpromazine.

Which is also known as Largactil I think.

And what was that like?

It wasn’t very good. It was for the first, I could barely get out of bed for the first couple of weeks in hospital. it’s a very, very heavy sedative.

So I couldn’t I mean I couldn’t do much anyway, but I could do even less. I was just I was made into a bit of a zombie really, you know.

But it did deal with the voices and things, not entirely but some in some way. You know, it went some way to doing that and I did, and for the first few years, after my diagnosis, I went from medication to medication to changing, always changing round and I had some really bad ones.

Some but this and it was some while before I was what I can, good medication, which is which is what I’m on, which is what I’m on now because I think it hadn’t come out at the time that I was ill.

It hadn’t, you know, they just it had only come out a year or so after I was ill so I as soon, which can and does happen, you know, they.

And it’s a much, which it was a much better one and it’s the one I’m taking now.

Right.

Which is called sulpiride, which, which is fine, you know, which is which I’m quite happy with, you know, but I did have to go, I had to try a few of the old the old fashioned ones.

Before then which had a lot of quite horrendous side effects for me, you know, in particular.

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Tom has been taking many medications over the years and has experienced physical and…

Age at interview 39

Gender Male

Age at diagnosis 21

And for the first few years, after my diagnosis, I went from medication to medication to changing, always changing round and I had some really bad ones.

]Some but this and it was some while before I was what I can, good medication, which is which is what I’m on, which is what I’m on now because I think it hadn’t come out at the time that I was ill. It hadn’t, you know, they just it had only come out a year or so after I was ill so I as soon, which can and does happen, you know, they. And it’s a much, which it was a much better one and it it’s the one I’m taking now. Which is called sulpiride, which, which is fine, you know, which is which I’m quite happy with, you know, but I did have to go, I had to try a few of the old the old fashioned ones. Before then which had a lot of quite horrendous side effects for me, you know, in particular.

And what are the side effects?

Well, one with this medicine called depixol. I was very tired all the time, very drowsy, very zonked out, you know, very medicated sedated. And also strangely enough, my throat constricted. The muscles in my throat constricted so it made it very difficult to speak. So I could hardly speak. It was and I tried to speak and it sounded awful, you know, it just like it sounded like someone was strangling me and I was trying to talk at the same time. So that that made me very wary of company and so I spent I spent a lot of those, I was on it for a couple of years, spent a lot of that time, [sniffs] you know, not, previously to my illness I’d been, you know, quite sociable and going out a lot and that kind of thing but that all went by went out the window. And also there was that and also, I’m not sure if this was my illness itself or a combination of the illness and the medication, or what, but what they call what the psychologists call affect. So I couldn’t laugh, smile I had to, you know, I’d previously been quite a humorous person but I’d lost all of that. Which also made me wary of going into company, you know. Because I was I was also a bit scared of as soon as I’d start talking to someone they’d realise I was I was mentally ill. Also there was all there was all of that, which was which was really difficult but things improved eventually with the new medication that that had just come out in about, I think it was 93 or 94. Which I which I went on. Things did get better but that problem with my speech which, you know, which I had no help from the psychiatrist didn’t refuse to believe it was a recognisable.

But things generally improved, yeah, with trying new medicine and that and that and that’s always the hope for people who have schizophrenia. That’s all, you know, that if they if they think there’s no hope there is because, you know, science and medical science is, hopefully, although I know it’s not funded as well as it should be. Mental health and but, you know, medicine I do, you know, I’ve had direct experience of medicines getting better over the years. And these things can happen, you know, and I’m holding out hope for there being an even better one coming out soon.

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Tom found therapy expensive and unhelpful, and thinks that CBT is mainly used for depression and…

Age at interview 39

Gender Male

Age at diagnosis 21

I also did try a bit of CBT with the national health. But I think CBT is more geared to depression and there’s very, there’s not much they can do about schizophrenia so I gave it up after a while as just a waste of time. Which is not, you know, [coughs] it’s been proved to be very effective with depression but not that much with schizophrenia.

Yes.

So I it’s not in but I know I also tried a talking cure with a private psychiatrist psychotherapist. That didn’t go, that didn’t, that was also, you know, they were they were loathed to take me on really because they, there’s nothing much they can do about schizophrenia either. So gave that up eventually because it was too expensive. I couldn’t afford it but there was he wasn’t getting anywhere really. I think talking cures are, you know, they’re I think they’re more effective for depression but I have I’ve tried it twice but it hasn’t really worked for me so I I’ve not got on with it.

When you say it hasn’t really worked? What hasn’t worked do you associate?

Well, it’s not made me any better, you know, and so I haven’t I just thought it was a waste of time And I don’t particularly like talking about myself either. I don’t find it particularly helpful sometimes so.

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Tom describes the beliefs he had in a year when he was unwell, including thinking that the Day of…

Age at interview 39

Gender Male

Age at diagnosis 21

Yes, well, yeah, sure my [sniffs] the delusions I underwent during that year when I was ill, which was sort of an experimental time, you know, just experimenting without, trying to live without medication, you know, so including, yeah, I was quite religious at that time so to an ordinary Christian say believing that believing in the resurrection and that believing also in the end of days and the last the last trumpet and the sea throwing up it’s dead and stuff, that that’s all part and parcel of being a Christian. But you could say that was a bit, that could be a bit of a mass delusion in itself but my delusion my main delusions at that time was that I was made, that the last judgement, you know, the when every when all the dead come back was happening. And I was everyday I was meeting I was sort of finding proof of that.

I was meeting usually, artists from the past like people like Goethe, Shakespeare, Beethoven, Liszt, great, Schubert, great composers, you know, or poets or artists or painters and that that kind of thing. And I was, you know, if somebody had just the slightest resemblance to say, I so I live in [place name] and just a couple of doors along, is a man looks a bit like Rachmaninoff and so, he had similar hair as well to Rachmaninoff had so for example, I’d, you know, I’d believe that that was Rachmaninoff coming back from the dead and because I was an artist I was believing they were they were trying to communicate with me and that’s why I was seeing so many of them.

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Toms psychiatrist recommended the book Coping with Schizophrenia.

Age at interview 39

Gender Male

Age at diagnosis 21

Well, my first psychiatrist, who I came into contact with shortly after I was diagnosed, he recommended a book just, Coping with Schizophrenia.So through… On the internet and just through books and I’ve just that I’ve just been and found in book shops and that kind of thing.

Can you tell me about some of the material you’ve come across?

Yeah, there’s a book a book I think it’s called, Coping with Schizophrenia, which was out in the early nineties so I read that. Just books about psychiatry as well as psychology.With chapters on schizophrenia and that kind of thing. I forget what it’s called. It was a pelican book.And I read that and just articles online and Wikipedia and that kind of thing.And also something about the history of it and the more, you know, and the history of psychology and things like that, which probably not that helpful for coping with schizophrenia or living with it but just more an interesting to me.

I was going to say how did you feel reading this material?

On the whole, grateful that I didn’t live in the past. Grateful that I I’m grateful that I wasn’t ill the eighteenth or the nineteenth centuries. Or before then grateful, you know, because it was pretty horrendous.And it was until, you know, the nineteen seventies or the eighties even. So grateful that I went, that I that I was ill at the time I was.

When you read material about schizophrenia, do you identify with it?

Yeah, yeah. Also it, you know, there was a lot I read, a lot that they, that I read that I wasn’t told about.That they didn’t they didn’t really tell me all that much about it, you know. They diagnosed me and there wasn’t that, you know, there wasn’t they didn’t they didn’t let me know much about it or even, you know, even they even some of the negative symptoms, you know. Maybe they talked a little bit about lack of concentration and so on but the so called negative symptoms rather than the positive the positive symptoms.Being the voices and delusions but the negative symptoms being the apathy, lack of will-power, lack of energy, and even lack of… lack of the ability to talk very well.They didn’t tell me tell me much about those and I and I that was that was just up to me, just sort of left to me to read about, to find it. You know, and to get to get books from and find it for myself. So they weren’t that wasn’t very good. That wasn’t, you know, that that was that was that that was a bit of lack I found in the in the service.

Well, what did you think about some of the quality of the information that you found on the internet?

On the internet, I only I’ve [pause 5 seconds] fairly good. I mean Wikipedia and things like that, you know, and fairly good. You know, I like Wikipedia. I think it’s very good so but it was it tended to be factual and less about coping with schizophrenia.And more about, you know, what it is and what the symptoms are but less about how, if you’re suffering from the illness how to cope with it.How to best cope with it and how to live with it and stuff like that.

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Tom was diagnosed with schizophrenia after spending time in a day centre supervised by…

Age at interview 39

Gender Male

Age at diagnosis 21

In [place name] where you sort of you know, you were under psychiatric supervision or you were close to, you know, you, a place where you’d go, you know, a day centre where you’d just go and pop in and spend the day there and be near the psychiatrists and things and have, you know, be interviewed and people talking to you and stuff. So I did that and shortly after, well, a few months after being there I started hearing voices and deteriorating rapidly and so I couldn’t but tell the doctors there about it.

And then I that’s when I was diagnosed as a schizophrenic.

Schizophrenic, sorry.

And what did you think about the diagnosis?

Well, I was very upset at the start of when I first was diagnosed just because I, you know, I thought, Oh, well, this is just I just thought, This is the end, this is the end of my life, you know, my life is over now So I was very upset and but also quite relieved because I by that time, I knew that something would be would be done about my, about what was going on. Something would, you know, somebody would get something done. They’d give me some tablets or something or send me to hospital for a while and then, I’d hopefully, I’d get a bit better. So it was a combination of upset and relieved.

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Tom found that playing the piano, reading, painting and writing poetry gave him a sense of…

Age at interview 39

Gender Male

Age at diagnosis 21

I was teaching myself to play the piano at the time as well so that did, that kept me going. That gave me a purpose and kept me going.And although I couldn’t, you know, I could just half and hour here, an hour there, you know, it wasn’t like I could sit down and practice for eight hours, you know.Or ten hours or whatever, which is what I wanted to be doing. So rather than get frustrated, which I did a bit, I just tried to accept that I was ill stoically and make the best of things.

And how did you sort of manage that balance? Did you get more frustrated or were you more stoic?

Well, there’s not a day went past when I didn’t really curse being ill, you know. I’d because I don’t like being ill andI don’t, you know, I don’t having the flu never mind having schizophrenia so I spent a lot of time, not so much feeling sorry for myself, but cursing my fate, as it were, and but realising the best the best, there was nothing I could do about it, and the best thing to do would be just to be stoical about it. Which I which I hope I have been and which I which is my ideal way of coping with it really, is trying to rise above it, trying to forget it if I can, and just get on with things as best I can.

And if I can’t, you know, if I can’t work more than a couple of hours a day, you know, I’m an I’m an artist, a painter and if I can’t pay for more than two hours a day, which I, and I’d rather be painting for twelve hours a day, then I just have to, although, I it’s difficult to accept. I just have to accept it as best I can, you know.

You were saying that the piano at the time, it gave you a sort of purpose and so on. Are there other things which were helpful at that sort of time?

I suppose reading literature, reading therapy, you know, I also fancy myself as a bit of a poet but I mean I used to write a lot of poems. Things like that. So that helped as well and just artistic things generally did help.And helped very much at times. Sometimes it, you know, sometimes it didn’t and sometimes they, you know, they caused a lot of pain because I couldn’t. You know, I felt I couldn’t do it properly. I could only, you know, like I was just saying and that sometimes that causes a fair bit of chagrin.But generally, artistic things helped and also my mum was, all throughout this time, my mum was absolutely brilliant, you know. It was great. Looking after me and being understanding and helping me in various ways and she was and I don’t think I would have survived if it had not been for her, you know. So that and also my dad helped and friends.

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