I was diagnosed with schizophrenia when I was just nineteen. I am forty-three now, and I have recovered – and I use the term ‘recovery’ in its fullest sense. I have been free of medication and free of symptoms for twelve years. 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 informed of the diagnosis. At that time I accepted what I was told by the medical professionals; 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 was an extremely shy and nervous child. I had a chaotic upbringing – my mother was an alcoholic and my father a gambler. My father was also a very volatile character, and extremely verbally abusive. I found school very difficult – academically I excelled, but socially I was completely at sea. My only happy childhood years were those I spent at boarding school, but I had to leave this school prematurely because of lack of funds.
I fell into bad company and bad habits as a teenager, and became extremely unhappy and isolated. I left home at sixteen, lived in various bedsits and smoked a lot of cannabis, but managed to 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 soon floundered at University. I had a breakdown when I was nineteen, was sectioned (forcibly detained under a section of the Mental Health Act) and spent three months in a mental hospital, St Ann’s in Poole, Dorset.
The treatment I received in hospital was brutal. Forced medication should in my opinion be outlawed, 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 Ann’s I was keen to get on with life. I stopped taking medication gradually, under the supervision of a psychiatrist whom I saw as an outpatient. I went back to University and gained an Honours degree in Law. 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 because it was all that I felt I could cope with. Over time my mental health deteriorated; I started to smoke cannabis again, and before I knew it I was sectioned once more and back in St Ann’s.
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. That there was no chance of recovery anyway. 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 believe now that this dismal prognosis was the thing that most hindered my recovery. I respected medical opinion, and I believed what I was told. In the day hospital I started smoking cigarettes again (whenever I was mentally unwell I smoked; when I was better I stopped. For me, smoking is a major marker of my mental condition). I ate constantly – meals were free and plentiful 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 a long period of time I travelled to the day hospital daily, took my medication dutifully and basically vegetated there. To be fair, there was some effort made towards education; we patients were told that schizophrenics are more of a danger to themselves than to others, for example, and that there was no element of split personality to the ‘disease’ that we suffered from. However, 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 didn’t want to live like this forever. I knew that there was more to me than this. I didn’t want to be fat any more, so I began to control my food intake. I didn’t want to be unhealthy, so I gave up smoking and started exercising – I walked to the local pool where I swam every morning. I was then lucky to be offered a flat by a local 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; I now had a decent home at a low rent, somewhere 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, working for an insurance company 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 my child should not learn to be shy, so I forced myself to start and to share conversations with other mothers at baby groups and on other excursions. And it worked! My daughter grew into a perfect little child, and my husband and I decided to cement our union with another. 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, but still based mainly at home 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 from the source of my unease, make an effort to 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.
I know that I am incredibly lucky to have got this far. I appreciate everything that I have now, probably because I thought for so long that it was out of my reach. My husband has been my greatest support, and I believe that my children have been my salvation. I am not sorry for anything that happened to me – I can see now that I played a part in my own downfall. I really want to help others who are in the same position now, to see that there is hope for the future. I feel strongly about a lot of aspects of psychiatric ‘care’ and I want to help to get the injustice in the system remedied.
I have been in receipt of State disability benefits for many years, and I believe that these helped my recovery, by removing financial stresses from the picture. However, the last step in my recovery has been towards work. I have written a book about my experiences, and it has had some success, which has encouraged me to follow the career I have always wanted, as a writer. I have found it hard in some ways to acknowledge that I am now well enough to work, but I realised eventually that the benefits were standing in my way; it is impossible to fully recover when you accept money for being unwell.
This journey back to work has happened very recently, and has been aided by a course of cognitive behavioural therapy. This has made a huge difference to my thinking. I have learned strategies to combat the anxiety that I have lived with for so long that I just thought it was part of my personality, and without the anxiety life is so much easier and better.
I consider myself very fortunate to have been able to manage my health without medication. Although I have had three severe breakdowns, I have only taken medication for a total of roughly five years in my life. I strongly believe that medication should be used only when necessary, and only when people agree to take it. Mental health problems 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 been desperate for a magic pill to relieve the effects of stress and anxiety in my mind; but I knew that no such magic pill existed, and by exercising, eating and sleeping well, staying calm and quiet, confiding in friends and so on, I have learned to manage my own life, and I recognise that this has made me a more resilient and capable person.
I have not had a straightforward path to recovery; the stigma of the condition, the very word ‘Schizophrenia’, has been a cause of shame and has certainly contributed to a sense of low self-esteem. For many years my doctor 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 have rejected the diagnosis for myself now – I do not think it is a valid label, or a helpful one, and it certainly does not describe me or my life.
In recent years I have learned to cope with stressful events, although on occasions I have feared that I would not. 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. That I am fit to work, because I am fit to live.
I would be very happy to receive any comments on what I have written here or on my blog – I am engaged at present in writing another book, about recovery from nervous breakdowns, and it is useful to hear other points of view on the subject.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.