At the Rethink AGM on Saturday, Paul and I met Terry Bowyer, who has a diagnosis of schizophrenia and who has been invited to sit on the Schizophrenia Commission. He is collecting recovery stories for the consideration of the Commission, and he asked me to send mine in.
Sorry, if it seems self-aggrandizing to publish it here. It represents several hours of work, which is why I am doing so. Not because I think it is brilliant or anything! Also, I decided on Saturday to go ahead with an idea that I have had for a new book on the subject of recovery from schizophrenia. This statement is my starting point. I have no idea how many thousand words it contains, because I forgot to do a word count, but I know that I will have many many thousands more to go before I am finished. It feels good to be on a mission again.
Louise x
Recovery
I am pleased to have been offered this chance to give evidence to the Schizophrenia Commission about my experience of diagnosis with, and recovery from, schizophrenia.
I use the term 'recovery' in its fullest sense. I have been free of medication and free of symptoms for twelve years now. I have a husband, a home, and four young children – all things that I never thought would be possible at the age of twenty-five when I was given the diagnosis. At that time I accepted what I was told; that the outlook was bleak in the extreme, that I would get worse as I became older and that I would have to be on medication for the rest of my life.
I do suffer from anxiety and stress, to some degree, but I know very few people who do not. I do not hear voices, or suffer from delusions or hallucinations, and I have only had these experiences when I have been in the throes of psychosis. The last of these occasions was twelve and a half years ago. I know that I am still classed as 'schizophrenic' in medical terms, but do not consider this to be a true reflection of the facts. Perhaps this is something the Commission could consider – that full recovery from serious mental illness is a reality. In this way, hope could be offered to those given the diagnosis.
In any case, I will set out first a few facts about my history. I was an extremely shy and nervous child. I had a chaotic upbringing – my mother was an alcoholic and my father a gambler. He was also a very volatile character, and extremely verbally abusive. My only happy years were the three I spent at boarding school, Roedean in Brighton, but I had to leave when I was thirteen because of lack of funds. (The school offered me an 'Exhibition', under the terms of which I could remain indefinitely with no fees payable (I was an outstanding student) but my father refused this offer because it was not extended to my older sister, so he felt that it was unfair).
I fell into bad company and bad habits as a teenager – I was extremely unhappy and isolated. I left home at sixteen, lived in various bedsits and smoked a lot of cannabis, but managed to get through my A levels and win a place to study Law at the University of Southampton. I found though, that with no social skills whatsoever and with very low self esteem, I floundered. I had a breakdown when I was nineteen, was sectioned, and spent three months in a mental hospital, St Anns in Poole, Dorset.
The treatment I received in mental hospital was brutal. Forced medication should be outlawed in my opinion, or saved for the most extreme cases; those who have been violent or suicidal. I was neither. The emphasis in hospital was on containment, not understanding, and this amounted to an inhumane system, notwithstanding the good intentions of some members of staff.
When I finally left St Anns I was keen to get on with life. I stopped taking medication gradually, under the supervision of a psychiatrist who I saw as an outpatient. I went back to University and gained an Upper Second Class LLB. However, I was still extremely nervous and insecure. I found it almost impossible to relax in company, although I longed to be more sociable. I felt like an outsider. By the time I graduated, although I was academically qualified to do a professional job, I knew that such work was out of my reach.
Instead I took on work as a waitress and cleaner (I had worked in the catering department at the University throughout my studies, something that was very unusual at that University at that time. I had to make ends meet during the holidays – when most people went home to their families I still had to pay for rent and buy food). My mental health deteriorated without me realising – I started to smoke cigarettes again, then cannabis, and before I knew it I was sectioned again and back in St Anns.
This time I did another three months' stint. I hated everything about that place – the forced medication, the atmosphere of fear, the mixed wards, the humiliation of finding myself in such a situation once again. But by the time I left I was still very weak mentally, and when a psychiatric nurse visited me at home and offered me the opportunity to attend a day hospital, I accepted through lack of any other options. At least this way, I could claim benefits to pay the rent on my flat, and so I would survive.
I was now twenty-five, and it was at the day hospital that my life changed. I was told that schizophrenia had first been diagnosed when I was nineteen, at the time of the first breakdown, but that it had not been thought appropriate to tell me then. Apparently the condition was confirmed by my second breakdown. Although I was confused at the lack of proof of the illness – there was (and remains) no physical test – I was told that there was no chance of recovery unless I accepted the diagnosis. Then, in a room filled with psychiatrists, psychologists, and mental health nurses, I was told that my life was effectively over. They spelled out that I would have to take medication for the rest of my life, and that I would get worse as I got older.
I know I mentioned this earlier in this document; that is because in my opinion the thing that most hindered my recovery was this dismal prognosis. I respected medical opinion, and I believed it. I started smoking again (by a huge effort of willpower I had stopped in the St Anns). I ate constantly – meals were free and plentiful in the day hospital, and my weight and general appearance seemed to be completely unimportant in the context of the fact that I was now a SCHIZOPHRENIC. I gave up hope. For years I took my medication, travelled to the day hospital and basically vegetated. To be fair, there was some effort made at the day hospital towards education – we were told that schizophrenics are more of a danger to themselves than to others, for example, but nothing detracted from my fear of what I had become, and what I might do as a SCHIZOPHRENIC.
After two or three years of this, when I finally began to recover, the impetus came from somewhere within myself. Somehow, I decided that I had had enough. I saw my sisters thriving, with their jobs and their young families, and I wanted what they had – I didn't want to write myself off any more. I didn't want to be fat, so I began to control my food intake. I decided to start exercising – I walked to the local pool every morning and swam. I was offered a flat by Bournemouth Churches Housing Association – the wife of the manager was a receptionist at the day hospital and she put in a word for me. This gave me some self-respect – it was a decent home that I could be proud of and where I felt safe.
I began to work again, as a chambermaid in a local hotel. It was menial and poorly paid, but it kept me active and was as stress-free as a job could be. Eventually I found a better job, in a call centre. Here I sent in an article to the internal newspaper, which resulted in some work setting up a newsletter for the Home Insurance department, and writing some internal communications documents for the call centre manager. I realised my vocation – I was a writer.
It took a while for things to settle properly. I met my husband, and we had a child, but I had my third and final breakdown after she was born. I was under considerable stress – my longed for child was born a month early and was taken directly to the neonatal intensive care unit. But the breakdown was bad – I was sectioned again. It was a huge shock to my system. and was regarded by everyone, including myself, as final proof of the schizophrenia.
I could not give in to the illness though, as I had done before, because I had my child to think about. As soon as I was released from hospital my husband returned to work and I assumed full care of our daughter. I looked after her diligently – played with her constantly, took her for long walks, and to mother and toddler groups. I was determined that she would grow up confident, so I learned to start and to share conversations with other Mums. And it worked! My daughter grew into a perfect little child, and my husband and I decided to cement out union with another. We were advised against it, but fortunately this pregnancy and birth was straightforward, and I remained well afterwards. Two years later we had another child, and eventually our fourth and last, and still I did not require medication. I gradually became more confident of my ability to cope with life.
I realised over time that if I kept my life calm and quiet, I would thrive and so would my children. I am busy these days, and my life is very child centred. My children are growing up to be incredibly smart and grounded, and the pride I take in them has given me the belief in myself that I always lacked. I have a place in society now, and I carry out my daily business as a full-time mother in much the same manner as those around me.
I now recognise and respond to signs of stress; for example if I have difficulty sleeping I make sure that I step back, calm down. I eat well and regularly. I never let myself become agitated to the point where I feel I could lose control. I bear in mind that what is important in life is my family, and that is where I direct my efforts, because I know that without me the home that my husband and I have built would crumble.
Benefits have helped, by removing financial stresses from the picture. I have been in receipt of sickness benefit for many years, but I am now at the point where I want to move on from this. It is hard to get better when one is paid to be ill; but it is hard to give up benefits when they provide a buffer from stress. Perhaps this is an issue that the Commission could address – that there could be more emphasis on provision of paid, therapeutic work for the mentally ill.
I consider myself very fortunate to be able to manage without medication. I think that if I had taken long term medication I would not be as well as I am now. I believe that medication should be used only when necessary, and only when people agree to take it. Mental illness can be dealt with in many other ways, and anti-psychotic medications have many extremely damaging side effects. There have been times in the last twelve years or so when I have wanted some magic pill to relieve the effects of stress and anxiety in my mind – but by exercising, eating and sleeping well, staying calm and quiet, confiding in friends and so on, I have managed without it, and I believe that this has made me a more resilient person.
It has not been a straightforward journey to recovery; the stigma of the condition, the very word 'Schizophrenia' has been a cause of shame and has made me hide my illness for many years, and has certainly contributed to my low self-esteem. The campaign of the charity 'Time to Change' helped here – they gave me the courage to speak out. I would welcome a change in the diagnosis – for many years my GP claimed not to be able to spell the word 'schizophrenia' and wrote 'nervous debility' on my sick notes instead. I wish I had taken the hint.
I believe that if those who have recovered could speak to those who have been recently diagnosed – if I could say, for example, 'I have suffered exactly what you are going through – it is truly awful, but things will improve', this could only be a good thing. To this end, peer support networks should be strengthened, so that hope and inspiration for the future can be passed on to sufferers.
Another point I would like to make is that while carers of the mentally ill are naturally concerned for their well-being, they may disenfranchise the patient. In my own case, my family, although I love them, find it hard to accept even now that I am now healed and as well as they are – they persist in seeing me as vulnerable, as schizophrenic. We can become trapped in others' perceptions of us and find it hard to move on – in this way, to depend on the care of one's family may hinder complete recovery, as the long-term provision of benefit may- although of course it would be far worse to leave the mentally ill alone and destitute. Schizophrenics need to be protected from the adversities of life, but also taught to cope with them.
In my case, I feel the lack of constructive support from my family was actually to my benefit – I have been forced to find my own way through my difficulties and my achievements are more tangible as a result. However, without the support of my husband, I doubt whether I would ever have got better. In the words of Karl Jung, 'A schizophrenic is no longer a schizophrenic when he feels understood by somebody else'. All of us deserve that somebody.
I have experienced some extremely stressful events over the years; my mother, who I adore, had throat cancer, my eldest child was very ill in hospital with a streptococcal infection. But I did not break down in response – and this in itself has given me confidence. I see psychosis as the mind's way of escaping from reality, when reality becomes so awful that one cannot cope. In that way it is a protective device. But the final step to recovery for me has been accepting that I am now completely healed; that I am no longer any more vulnerable than anyone else, that anyone could break down given the circumstances I found myself in, and that I am in fact now much stronger as a result of my experiences. I have written a book about my life so far, 'Surviving Schizophrenia: A Tale of Sound and Fury' under my maiden name, Louise Gillett, and am now embarking on another book detailing the steps that led me to recovery.
I wish the Schizophrenia Commission all the best in their enquiry, and put myself at their disposal should they require any further information.
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