I first became ill with paranoid schizophrenia in April 1994, aged nearly 33. I don’t know why I got the illness there being no reports of it in my family. However my father is a coeliac, that illness being linked with paranoid schizophrenia, so I may have inherited the condition from him. I had drunk three pints of beer every night for years, more on Friday and Saturday and that might not have helped though I don’t imagine smoking some weed ten years earlier while travelling in Africa can have caused it, however bad the reaction at the time.
I became ill almost overnight although I had paid certain aspects of my life scant attention for some time. I felt wonderfully excited as though I had been the only person in the country to be let in on a great secret. I spent that summer travelling around Britain, Ireland and parts of Europe in search of more delusional excitement.
At the end of the summer I was misprescribed (I feel) an antidepressant. It was like pouring petrol on a fire to put it out. I ended up a week or two later causing £10,000 worth of damage in a few minutes and was sectioned in an old asylum, quite an experience. I was prescribed Chlorpromazine. No alternatives were mentioned or discussed. It made me suicidally depressed and gave me retroejaculation. I knew I could not live my life feeling so low and as soon as I was released stopped taking it, the schizophrenia having gone into remission. It was a lonely decision to stop taking the drug. I felt there would be no support if I told anyone. Nobody had given me any hope that I could either recover completely to the point of requiring no medication or find a medication I could reasonably be expected to take. I felt a great stigma towards myself and acute embarrassment at my diagnosis. It was not possible to really acknowledge to myself I had been ill as the consequences of that were unthinkable. It was a sort of protection mechanism in a way. Although I encountered one or two good nurses on the wards I was very unimpressed by almost all the psychiatrists (except a Scottish one) and this pattern would be followed throughout my history.
I spent the next 10 years of my life in a cycle of gradually getting ill (which I usually enjoyed), getting arrested (at first for criminal damage and later for written material I had produced), being sectioned, and made suicidal by the NHS whose drugs for schizophrenia almost invariably even with one of the modern atypical drugs, gave me suicidal clinical depression as a side effect. At the same time the schizophrenia would go and at risk of suicide because of depression I would be deemed ‘well’ and released from hospital. I would then stop my treatment because of the side effects and gradually get ill all over again over 6 months or so. I was quite sure that since the introduction of Chlorpromazine many patients, though I do not know what proportion, had committed suicide because of the clinical depression the drugs had caused them. I was and still am absolutely staggered that I was given no warning or understanding in this respect. How could this country lock a person up and force chemicals into their blood stream which made them suicidal? What misery of depression, akathisia and other side effects e.g. sexual had I to put up with!
I escaped from hospital on the second occasion I was sectioned, so frightened of the side effects was I and went on the run until the section had expired. My benchmark for happiness was not being medicated and so I was able to find joy as a street beggar. I disappeared from home for a whole year at one point to avoid treatment and later absconded, rightfully terrified of the injection I was to have had the next day. Again I found some happiness on the run.
After a decade of this I was told about an illness called post-psychotic depression. When, eventually, I was given a drug which did not list depression as a side effect I did not get depressed, a major advance in my treatment. So I wondered if there really was such an illness as post-psychotic depression rather than some protective delusion of the psychiatrist. It seemed vanity prevented him from seeing he was driving his own patients to suicide with drugs which should have a warning on the box like cigarettes. Another step forward took place when I got a new CPN and she agreed to try and treat me without medication. It did not work but it showed me (if only subconsciously) we could perhaps work together. She also helped me with my advance statement to stop any of the drugs I had already so unsuccessfully had being forced into me again. When the MHRT released me from a section this showed me I could get at least some justice, another key moment.
Some 10 years, and as many sections after I first became ill I was released from hospital by the Hospital Managers. Before my release the patient in the next bed to me had told me he was getting no side effects from his treatment. As none of the Managers was a doctor I felt a particular responsibility to them for releasing me. I went to my GP (with whom I had generally maintained a good relationship) and told him it did not require a genius to see I would be back again in hospital after a few months if I was not taking something and asked him to at least try me on that drug the other patient was on so I could say to the Managers I had. I have been on it now since April 2004 and have stayed well and avoided hospital.
Generally I did enjoy being ill and I felt very positive and purposeful. On the other hand the treatment was appalling: criminally and murderously shocking for 10 years until I found this drug. But I would really not change anything (now I am through it!) as it all gave me the material to write a book, something I would not otherwise have done.
I remain well though with mood problems I think associated with my employment situation. This is greatly helped by going to the gym. I go most days. My family are very happy that I have avoided hospital for so long and don’t look like I am going back. If I was what is there to fear? I have found a drug I take voluntarily and all the ones I have tried so unsuccessfully are now excluded by my advance statement.