Employment and Mental Health -
Joint Committee on Action for Community Care Awareness Day, January 2001

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Hello,

Emma has asked me to talk about schizophrenia and employment. In five minutes I want to give you a huge insight into my life over the last 16 years. I'll do my best but it may be a bit limited!

When I talk about awareness raising I mean precisely that. There are things that I have gone through that not many other people experience and I want you to know about them in order that you and other people can understand my journey and perhaps along, the way pick up a few tips and ideas of those things that can improve my life and the lives of others like me.

I am doing this talk with Marcia and I think the fact that we are talking together illustrates a very important point. Marcia and myself are of different nationalities, sex, class, age and have completely different life experiences and yet we have both been diagnosed with schizophrenia. It is, as you know, not a discriminating illness.

I have been ill since I was 20 but in the initial years of my illness I had a diagnosis of a personality disorder. Those were the worst years of my life, a mesh of darkness of confusion, of struggling in a fog of bewilderment and hopelessness. In those years I didn't and couldn't work. We may talk about that in the discussion that follows but for the moment I will talk about later in my life when I was diagnosed as being schizophrenic.

When I became psychotic for the first time, which to me equates with entering into an alternative and usually frightening reality, it was a period of escalation. I have often told people that I became ill at a time of huge change in my life, my son, was only five months old, I had my first real job and we had bought our first house. I was rapidly becoming respectable in my eyes if no one else's and as life became harder my thoughts started racing.

I couldn't sleep and I couldn't relax and as my thoughts ran riot so they changed. First of all they became negative and self harm and suicide started to loom which frightened me so much that I contacted my doctor, but whilst she tried to arrange for help, my thoughts and beliefs outstripped any response that could be given to me.

I became immersed in another world until one night I told my wife that I was possessed by evil spirits and that the only way of getting rid of them was to go into the woods and get rid of my blood, which I believed was so infected by evil that it had to be removed from me. I find it hard to forget the expression on her face as I announced this and armed with razor blades, set off outside.

The next few months and even years rest between me and my wife as a memory and a heavy sac of betrayal and fear that still fill us with apprehension. The thought that something could get so bad again does not bear talking about. It is not something that we can even contemplate without fear.

As far as my wife is concerned, I became a stranger to her, I was no longer the person she loved and trusted, I was someone with different beliefs and feelings, I moved differently, I acted differently I even smelt different once I was put on drugs, my self was denied to her and I could never understand this because I felt to my very core that I remained me and I was still my essential self whatever my thoughts and actions.

In those months my central preoccupation was about spirits. I felt that I was surrounded and possessed by evil. In the shine of the sun I saw spirits, in the reflection of a glass, the glow of a light the gleam of furniture, I saw spirits watching me, controlling me and altering my thoughts. It was very frightening and confusing. In this reality I tried to minimise the damage. I thought that I was possessed and controlled and that the evil that I felt was within me could be transferred to other people. I wouldn't let anyone near me or allow other people to touch me for fear of what might happen to them. My wife would visit me almost daily in hospital and for two months I would neither touch her nor my son.

I tried to resist the spirits. In the morning I would go into the quiet ward and stack the furniture, the plants and the books into weird patterns that would resist evil. I would spend hours with my jumper wrapped around my head to protect me and every one else. I burnt patterns in my hands with cigarettes to combat their influence. I cut my wrists to release their malevolence.

These thoughts carried on for a fair time, on and off over the next couple of years. Sometimes I was in hospital, sometimes I was at home hiding under the floorboards, sometimes I found myself sat frozen in my thoughts whilst time passed and thought and action seemed as heavy and unwieldy as lead and the days stretched and the minutes dragged.

Nowadays I am very well and very happy. I do have symptoms, which I will briefly explain. The feeling of evil has not left me, when I imagine myself I see a tree that has gone rotten and slimy inside, but bright and smooth on the outside. When I drive on my own for a long time I can spend ages talking to myself in my own strange language.

I occasionally get into a state where when I am speaking to someone a refrain will go around inside my head that is commenting horribly on the person I am speaking to, and then I can start to believe that they know what I am thinking but are too polite to mention it, or maybe that I am part of an experiment where everyone else is telepathic except me and that it is amusing to see the antics of the likes of me. At other times I carry hypochondria too far and become convinced that I am dying.

I guess that this might sound a little strange but it does not compose all of my experience. The symptoms that I experience today are not overwhelming and are often fairly rare.

What is important to mention though is that I have never lost my job through illness and have almost never spent more time off sick than anyone else is entitled to and that in my present work, that has lasted five years, I have never spent time off sick due to mental illness despite still being mentally ill. I feel that the reaction of my last employers who dealt with me when I was very ill is one of the reasons that I am so well and happy today.

First of all the nature of my work was such that there was no way of hiding what I was going through. I was never made to feel a burden or odd or different. Unlike most people in mental hospital, I had a surplus of visitors including my bosses who were all pleasant and concerned and helpful. They made it clear that I did not have to worry about my job at all and best of all encouraged me back to work on my terms.

Even when I was very ill I could go to those work meetings that I thought were important, not to participate, but just to be there when I wanted and to leave when I couldn't cope anymore and gradually as I got better we increased this. A few hours here a few there, until eventually I was able to commit to a few days and then to half time, when for a week or so I was on half wages, and then back to full time for as long as I remained well.

When I was back more or less full time the atmosphere at work was caring and supportive. If we had a doctor's appointment we had no worry at all about taking it or about saying what it was for. If we were having a very rough day then other people would pick up on it and if necessary send us home for a rest. It was very caring very supportive and very understanding and gave me the confidence to be doing the sort of work that I do now where, being a bit too driven for my own liking I often fail to pause to look at my own self.

Work is very much about money for me as it is for many people. It is great to have a good income, a good house, and lots of whisky. But equally work for me is an occupation and escape for any bad thoughts that may interfere with me, a contact with lots of people who I hugely respect and like, and a chance to do things I believe in deeply and feel about passionately.

The one thing that I hate is that although many members of HUG feel justifiably that work is not for them, many others could work if given the chance. There are a huge number of people with numerous talents who do not have the opportunity to use them and this is sometimes purely due to discrimination and sometimes just because we lack the imagination to make the workplace accessible to people with a mental illness.