Schizophrenia a Personal Experience.

At age 21 life could not be better. I had just graduated from University with a first class degree, had been accepted to study for a doctorate with funding (the academic equivalent of being selected for the Olympic team) and had a research supervisor who was a member of the House of Lords. What could go wrong?

Nothing, or so it seemed. Then it happened: Schizophrenia. It wasn't a sudden shock, more of a gradual onset, although nothing had prepared me for it. Nobody takes you aside at school and says, "Look you might get a mental illness!" There was no information available to allow a self-diagnosis. I had heard of Schizophrenia but thought it was a split or dual personality. It was all the more frightening back then, as I didn't know how to help myself.

For the first few years I stayed at University in Southampton - at the opposite end of the country and away from home and family. I managed to keep my head above water on my course, as the symptoms were not so bad at the start. I kept hearing people talking about my actions, behaviour and thoughts. Eventually I spent more time thinking about this than my work and had to give it up and go home – just in time.

My psychiatrist described my symptoms as particularly severe so they are probably worth recounting. I kept hearing the neighbours banging on the walls trying, (so I thought) to play on my nerves. My response was to run not just out of the house but to get as far away as possible. That meant getting away from everybody. I wandered round the countryside at night trying to avoid towns and villages, from which direction I could still hear the banging noise. I had paranoia and auditory hallucinations all mixed together.

This however was not the end of the matter. I had other kinds of delusions. I thought I was responsible for all kinds of problems: wars, crime, disease etc etc. The worst such symptom was that I had memories of being the reason why everything from TV programmes to the architecture of buildings had the form and appearances they did. It was like wandering around in my own subconscious. I tried umpteen times to commit suicide but was sectioned and taken to hospital.

I was in there for more than a year while `they' the doctors tried to find the right drug. The illness never was a continual thing – I had good periods and bad. Then I was put on Risperidone and some of the delusional symptoms seemed to improve. I still had other problems – most notably strange thoughts and periodic head pains – but I think the doctors must have thought that by then I had gone through the system and come out the other side!

I was left to live independently. That proved very difficult. The stigma of mental illness made me a virtual recluse. You can't go down the pub and face the inevitable question what do you do and reply your schizophrenic. On my own the presence of the voices seemed to be magnified and there was little to help the depression this created. The answer was to live in sheltered accommodation -and as with my stay in hospital this improved things further.

What I have learned about having such an illness is that one of the best things which can be done is to simply talk to the patient. I guess this can act as a distraction from dwelling on your problems. Living together in sheltered housing aims to provide such a context. Some kind of activity is also necessary but this can be a double edged sword – work can be stressful but then doing nothing can be the same so it is often necessary to balance the two. Variety in terms of people and activity is also necessary.

The biggest help in my case seems at present to be the drug clozapine. My mental health has been greatly improved since the very first time I was prescribed it. That was two years ago! I still have some symptoms and side effects but I am a thousand times better than I was. I have started to research and write again. This time about mental health. To date I have had much published.

 Hope and Hopelessness.

I think the social isolation of people with mental illnesses experienced as a result of the policy of care in the community magnifies the therapeutic importance of the family immensely, even and especially whilst living in Sheltered Accommodation. I have friends including staff members at the project I live in but being able to ‘go home’ as I call it is still tremendously important. It helps that my parents know what to do in a crisis and learned this from experience. Otherwise it may be that going home to stay overnight (as I do) would not be possible.

It also helps in that a change of scenery is tremendously important. A change is I have heard it said as good as a rest. It is even better - following this line of thought further - that you are able to go on holiday with relatives, at least once or twice a year to break the year up and especially during the long winter months. People who have supportive families are also a lot happier around Christmas time and more so if you have nieces and nephews (I have one of each). Without this contact there may be a need for anti-depressants.

I guess in a way I am very lucky to have all this family input. Years ago they say if any one in the family had a history of mental illness it was never talked about. With the media image of ‘lunatics’ I am sure families still have a hard time coping with the stigma. Carers need carers themselves but may perhaps experience isolation because they feel they mention problems like this to friends. As a result there is a great reliance on health care professionals who are already overworked.

Often too it is only the immediate family that has much direct contact with medical people and social workers and their understanding of the acute nature of mental illness, the ins and outs of hospital, stigma and many other aspects will not be shared by other relatives etc. This can create the odd problem when your parents go on holiday and there is a crisis. I guess the first impulse to ring your family for help but they cannot always be there. Ringing another relative instead can be a bewildering experience for them so sheltered accommodation is a very good answer here in case of emergency.

Another important point is that severe problems with paranoia fuelled by general hostility to mental illness from the community can mean that everyday functions like going shopping are very difficult. Again going with a family member to the supermarket or shopping mall can not only be supportive but also vital. This also gives an experience of normality and to that extent overcomes feelings of social exclusion as well. Many people I know do not have the confidence to do this and in my case family support was needed. It also helps you on the way to greater independence.

The opposite effect is also true – that families have to push the sufferer to go out and do things because it can sometimes be to easy not to confront these problems. You can easily for example avoid going out and get just about anything off the internet. Learned behaviour from bad reactions to going out can lead to a phobia so getting a push to go can in the end increase your confidence. There are no hard and fast rules for when to push and when not to but I think this is an important point. It can just as easily be argued why go out if it makes you ill which again is I think a legitimate issue.

Another large area is family support during visits to doctors and psychiatrists etc. This is I think important because the turnover amongst medical personnel is quite high and they do not have the time to ponder anyone individual case for long nor to fully read the case history. Family will as a result probably know a lot more than the doctors and social workers involved and in my case have often been the only constant element throughout an illness which has varied a lot through fifteen years of problems. As a result for example I rely quite heavily on having someone to assess the trend as compared to the past.

There is also, I think, a professional stereotype that parents worry unduly - especially mothers – and press the panic button at the first sign of trouble. This is a tricky one but can it seems be overcome in the following way. The first thing to do is indeed to call for a doctor at the first sign of trouble and to say why regardless of what the doctor might think. In my case my family have had me sectioned several times but when I got to hospital it became very apparent to the doctors why. From that moment on they paid very close attention to my mother’s opinions and a social worker even remarked “no one knows you like your mother!” Schizophrenia is always taken seriously by doctors and repeating episodes are very common too, so ringing doctors should not be seen as over reacting.

In the end there are probably a myriad of other ways in which families help the patient outside of hospital including in all the ways we have and need to rely on them during normal life. The emotional aspects, feeling wanted, being loved (etc etc) are the most profound and important, loss of this aspect through stigma or whatever just creates a void here and makes the negative experience of the illness worse. Again there are so many potential positives I have been ill for 15 years but never once have had depression. This I think says a lot about the importance of family to mental illness.