Stuart - Interview 02

Age at interview: 45

Age at diagnosis: 31

Brief Outline: In 1991, after returning to London from Moscow, Stuart experienced extreme worry and paranoia. He moved to the country and was diagnosed with schizophrenia in 1996. He was both shocked and relieved. A befriender from Rethink helped his recovery and he now maintains a distance from psychiatry.

Background: Stuart is a political activist/documentary photographer/writer. He lives with his partner. Ethnic background/nationality' White British

More about me...

Stuart grew up in Essex and had family problems. He felt his behavioural problems weren’t recognised by his school and he was just treated as a badly behaved kid rather than someone who was shouting out for help. He describes how from a young age he tried to indicate to his mother that he was depressed, and was told that only selfish people get depressed. Stuart had a bad time at school, had problems with his hearing (which meant missing school) and was asked to leave school at the age of 16. After this, Stuart joined the Marines, which he subsequently left as he found he was able to cope with it physically but not cope with the mental bullying. He then moved to London and tried to find employment, but was sleeping on friends’ sofas. In the end, this was too difficult, so he moved down to the country to stay with his family, but he continued to have a difficult time with them. What had in his earlier childhood been sadness and depression was turning into anxiety and frustration when he thought about the preferential treatment of his twin.

During a trip to Moscow in 1991 he took part in anti-communist demonstrations and received a phone call in the middle of the night in which a man was being threatening/abusive towards him. After returning to London, he began to suspect he was being followed after a couple took a picture of him in a phone box. He eventually saw a GP in London after what he describes as a psychotic attack experienced in his bedroom, when he foamed at the mouth and for some seconds was in darkness and away from reality. After a period of intense worry and paranoia, he moved to Devon to escape the KGB, feeling that everyone was against him or part of the KGB. He also describes his feelings of paranoia about Russia at the time as something in line with the public paranoia during the Cold War. When Stuart moved away from London to Exmoor, he started to have a lot of strange experiences and wasn’t sure if they were psychotic or psychic experiences. In 1996 he moved from Devon to Dorset and was diagnosed with paranoid schizophrenia by his GP. His psychiatric nurse described it as one of the worst cases of undiagnosed schizophrenia he had ever seen. Stuart reacted to his diagnosis with relief and confusion' relief that someone had given a name to his experiences, and confusion that he was told what he had experienced were paranoia and delusions. He felt as if people in psychiatry were very pessimistic about his chance of recovery, or about his ability to go back to work. He also felt pressurised by the Mental Health Act to comply with their opinion. A few times he has been asked to go into hospital on a voluntary basis, but he has refused because he thought it an unpleasant place to be and not helpful to his well-being. He describes being prescribed Risperidone and having a bad reaction to it as it seemed ‘like a mental strait jacket’. He experienced significant weight gain, and his GP encouraged his psychiatrist to change this prescription. In the late 1990s he met a befriender from Rethink who aided his recovery considerably, and assisted him to have a more positive view of himself than the one psychiatry had of him. In 2001 he was put on Seroquel which he preferred. In 2004 he felt that he needed to distance himself from psychiatry as he had moved on and progressed whereas they had not. Currently he feels that there is a great deal about schizophrenia that is poorly understood, and has an interest in furthering his understanding of psychic activity, having a history of psychics in his family. Currently Stuart does campaigning work about reducing the stigma of schizophrenia, and feels that schizophrenia is part of him, not the whole.
 

Nowadays Stuart has recovered from his condition and does all he can to promote a positive image of schizophrenia and to help inspire others on their own journey of recovery.

He climbs in the Himalayas and is now noted for his photography. Stuart often appears in the media and has sat on select panels at both national and international level as a spokesperson for those diagnosed with severe mental illness.

 

Stuart talks about going on an anti-communist march in Russia, receiving a threatening phone call...

I took part in marching with the people against what was happening, but after the second night, the second day of me marching, I got a phone call about 2 a.m. in the morning. Which woke me up, and I answered the phone, and it was just this man in Russian, sort of swearing at me, really shouting and swearing at me. And I could, I spoke the language a bit at the time, so I understood he was swearing at me, and he was going on about me, you know, who the hell did I think I was involving myself in their business. And I just put the phone down and then I just sort of started, I started to experience this tenseness inside, and I remember my heart was pounding. And I suddenly started to really fear what I’d done, and, and, and I couldn’t sleep that night, and when I was walking round the hotel the next morning, I was just like, you know, felt that, I’d done something very wrong, and that... you know, that I was going to get harmed in some way. And I started to pick up on, sort of walking round the hotel, I, that people looked at me. I felt that they were, you know, it was they weren’t just looking at me, they all knew who I was and that somehow my life was starting to be in danger and ...And it’s possible, you know, it’s... you know, it’s possible that they, they... you know, was I just a tourist? Why was I touring? You know, when all tourists at the time were given the option to leave Moscow and they did. And there’s a few other people that stayed, you know, but may be they were questioning my …I mean there was a lot of paranoia at the time, you know, with the cold war everything and being sort of... East and West, and they knew I was from the UK, and I think they be, you know, they were thinking who is this man? You know, and, and, so that, that, you know, sort of ignited my paranoia.  

Stuart describes the shock he felt when he was first diagnosed with schizophrenia.

One of my immediate responses to my diagnosis was, “Oh good, when can I go back to work?” You know, I thought they were gonna sort me out and it meant I could go back to work, and get on with life. And I was just told that I had to accept it was likely I’d never work again in life, and I had to accept it was likely I’d never get over the schizophrenia and that was, that shocked me. You know, there was nothing positive given to me about the diagnosis. I expected, right, they’re going to do something, I’m going to have medication. Oh I didn’t actually realise medication at the time. I didn’t … before I was diagnosed I’d been on Prozac for some years. And other medication I couldn’t remember but, you know, I had no understanding about antipsychotic medication or the medication that’s given for schizophrenia, so it was sort of relief, you know, that I could. I remember looking down the list and I think this list was provided, the leaflet was provided by the charity Rethink. And I looked down the list of all the symptoms of schizophrenia and I could just tick every box. You know, and I recognised it. 

Stuart missed school due to an operation and fell behind; he started to feel stupid and depressed...

I was at school in the late sixties, and all through the seventies, and early eighties and... children at that time, if they had problems it wasn’t recognised. You were just treated as bad kids, and disciplined all the time, rather than you know, having people wanting to talk to you, and help you.

 

So, you know, I was thought of as a very bad child, who used to misbehave, but it wasn’t anything like that at all. It was because of family problems. So I had to let it out somewhere. Because I was at school every day of the week, you know, when you’re a kid that’s most of your life is at school, so it had to come out somewhere, and so no I didn’t get any help at all.

 

I tried turning to my, my mother, my family had a very Victorian approach to mental health at the time. From a young age, I tried to express that I felt depressed and I was just told that I was being selfish and that only selfish people get depressed, because... [exhales breath] it was, you know, I was being self indulgent by being depressed, and that sort of thing.

 

So at about what age did you start to feel depressed?

 

I think probably around about six or seven, I can remember and also around that time I started to have hearing problems. And, I was in and out of hospital quite a lot, and I had various operations on my ears. I used to have grommets put in my ears. ...and that would mean at the time, you know, you probably sort of had two or three weeks off of school. And I can remember sort of going back to school and totally, this was in junior school, and just, you know, three weeks is a big gap, and I just would go back into class and I was just completely lost, where everybody would seem more advanced with what they’d learnt in those three weeks.

 

And so I started to feel, you know, I was starting to fall behind in education from a very young age, and nobody ever sat down with me, and let me know what was going on. So I was getting depressed because I started to feel stupid. I started to feel thick. I was under-achieving. And I started to feel very lost, but there was no support for me at the time. So… 

Stuart thinks it's wrong of psychiatry to assume that anything ‘outside the box' is potential...

I do now, believe that there’s a lot that exists outside our current understanding. Like I was saying, you know, I think it’s very wrong to assume, because we don’t see it, doesn’t mean, it’s not there, you know, because we can’t touch something doesn’t mean it’s not there. I think, nothing’s very wrong, I believe that I have had a lot of psychic experiences, as you’ve just seen the film of my grandfather, doing stuff where he was known for using the powers of his mind, and going beyond the current understanding of the mind.

 

I believe those things do exist and it’s very, very wrong to psychiatry to assume, assume that anything outside the box is potential mental illness or psychosis. And I mean, I believe that a lot of stuff, may be psychosis and psychic is much so one in the same. And but I, a lot of confusion has come in my life where I, I’ve tried to speak to psychiatry about psychic experience and they’ve just told me, it’s a mental illness. 

 

And I think that’s just very, very ignorant. You know, we know nothing. 

 

We know nothing of the mind’s capabilities. We may, what our brain is there for, is to receive information, maybe, psychic experience is the brain doing its natural job and receiving information, but because that information that’s been received is not currently understood it’s wrong to say it’s mental illness. In my book but it’s very wrong. And that is not progression, you know, but that’s not progress to me. Maybe we’ve really start looking at certain experiences of schizophrenia and rather than just saying it’s mental illness. May be, you know, unless it’s been investigated, what is this experience about? You know, and may be some voices, you know, I’ve heard, you know, a lot of people that hear voices, may be some voices may be psychic. Many psychics have voices that speak to them, and they pass those voices on. Sometimes that’s happened to me. Other times I can recognise my voices have been caused by stress in life. And I’ve worked out what those voices are. I don’t think that they’re not psychic, you know, those voices I recognise have got nothing to do with being psychic, they are, they weren’t myself expressing anxiety and fears in life and they came out in voices. You know, but I don’t think all voices are mental illness. 

 

Stuart found that accepting his medication and diagnosis was key to his recovery, but that he...

 

To people who have just received a diagnosis of schizophrenia, I would say, accept the diagnosis, research the symptoms, acceptance and understanding of schizophrenia, and myself have played a massive role in my recovery. You know, accepting that I’m on medication. I accept I need that medication, because it helps me sleep, it does help me keep balanced. So you know, I’ve never played about with medication, I accept. I need that medication, I think understanding, it’s always good to research the condition, all angles, you know, there’s plenty of other theories about schizophrenia out there, other than just the psychiatric view.

 

I think people need to do lots of research... the other thing that helped me greatly in life was I started to work with my symptoms. For many years I feared the voices, I fought the delusions and the more I, the more I feared my diagnosis, and the symptoms, than actually the stronger it became. By accepting the voices, and accepting other things, sort of weakened it. The more accepting, acceptance and understanding I have in my symptoms, the more it relieved the symptoms. So I think acceptance and understanding. Be proud of who they are, there’s nothing wrong with schizophrenia at all. I think people who are diagnosed with schizophrenia are very unique people. It’s not a weakness. There’s a very creative side to schizophrenia and I think if we look back at history, people, even Einstein has been related to schizophrenia Van Gough, Newton, Isaac Newton, famous writers and artists, philosophers, people who have changed the way we think and act, you know, have been related to symptoms of schizophrenia. So it’s a very unique, creative condition. At this current time, it’s a very, very misunderstood condition.