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Living with a Mental Illness -
Police Awareness Training, January 1998

 


Hello -

My name is Graham Morgan and I facilitate the Highland Users Group, which represents people with mental health problems. I myself have a diagnosis of schizophrenia.

I am going to talk a little about what it is like to have a mental health problem, but also about the services we use and those that we need, but do not as yet exist.

I have a difficult task here. I have made an assumption that many of you, through no fault of your own, will not know much about mental illness although statistically some of you will have direct or very close experience of mental health problems yourself. For those of you that are well informed, I apologise if I make this too simplistic.

I want to show the reality of severe mental illness, but at the same time I do not want to make you think of us as tragedies, victims, people to be scared of, controlled or pitied. We are just ordinary people who happen to need some help to maintain a life in the society that we are all a part of.

I have had a mental health problem since my early twenties, and in the last 6 years this has developed into a serious illness that has been diagnosed as schizophrenia. Basically this means that on occasions I enter a different reality to the one most people would accept as "real". When I am acutely ill a range of things happen to me, such as -

  •  I start to believe that I am possessed and controlled by evil spirits.
  •  I start to think that just by being in a room with people that they can become infected by me and so I avoid contact with people.
  •  I begin to think that everyone knows my thoughts, that people are staring at me and writing things about me and that my thoughts are being altered by the spirits that I believe control me.
  •  I see bright lights that I believe are spirits.

I do bizarre things to try to get rid of these thoughts, such as -

  •  I have wanted to be electrocuted or locked up in solitary confinement.
  •  I have hidden under a gap in our floorboards for a couple of weeks, convinced that I will be safe there.
  •  I have burnt strange patterns on my hands with cigarettes and re-arranged furniture into shapes that I think will protect me.
  •  I have cut my wrists with razor blades.

These experiences are obviously very frightening for me, and those that are close to me, and sometimes mean that I need to go into hospital for a time. It is important to realise that, although part of me in those times is in unreality, the rest of me is very much in this world. I still feel and I still know what I like to eat and I still know when people are treating me well or badly, but I do have a lot of trouble functioning in an "ordinary" way.

I have experienced, and for many people this is the main experience of schizophrenia, the opposite of the acute illness, known as the negative symptoms where the world seems to be ruled by apathy. Where life consists of staring at a wall and smoking cigarettes and where it is hard to speak and creativity and spontaneity become alien concepts. I have found that aspect of the experience the most difficult to cope with, this almost disengagement with myself.

Well that is what mental illness has been like for me. If we left it there then maybe you would be justified in thinking of tragedy and pity or fear, but that is only a small part of my life. I still have symptoms - I still regularly see my psychiatrist, my community psychiatric nurse, my GP and should soon be seeing a psychologist.

However, during all this time I have stayed in employment, I have remained married and I have helped bring up my child. How do I express this? As people, we have difficulties because of our illness but we still very much remain human. I am in daily contact with people with severe mental illness and want to emphasise the positive.

We remain vibrant, we have a huge amount to give to the society we live in, we love, we laugh, we cry and we are sad. We are mothers and fathers, brothers and sisters and children. We talk about politics or football or philosophy. We go for walks and into cafes and pubs and restaurants. In other words, we remain ordinary people.

Some of us are clever, some of us not so clever, some of us exciting and some of us boring. The vast majority of us couldn't be picked out as mentally ill in a crowd, and of course there are a lot of us. I believe that it is estimated that there are 21,000 people in the Highlands with a mental health problem.

Some people, like me, have employment but for many of us, perhaps the majority of us, employment is a distant prospect. Distant for some because of their illness, but distant for many because of stigma, prejudice and discrimination.

It is inevitable that stigma and discrimination will exist when most of the population is ignorant of what mental illness is and spurred on by our culture and media fearful of mental illness, but being on the receiving end of prejudice can be a very uncomfortable experience.

Let me give a few examples:

"These psychos should be given the needle - they should be put down". That was said in front of one of our members in a pub in Inverness.

The first time one of our members was admitted to Craig Dunain she didn't tell her husband where the ambulance was going until it missed the turning to Raigmore. She was terrified he would leave her when he found out where she was going. For the first two weeks in Craig Dunain she kept her coat on so that people might think of her as a visitor, and only left the ward when groups of nurses were leaving so that she might be mistaken for a nurse. We carry the stigma or disgrace inside us too.

I met someone in Craig Dunain recently who was saying to me how much he wished he could stay there indefinitely so that he would not have to go back into the community to endure the bullying and name calling that have become a constant feature of his life there.

Whenever I meet new people I wonder when I will tell them that I am mentally ill and how they will react. I don't know why I do it; it is such a central part of me. No one has turned his or her back on me yet and yet I am always expecting it to happen. What I do know is that there is always a reaction to mental illness. If it is not fear and avoidance, there is intense interest or people wonder "how do I talk to them?"

Whatever the reaction there is a "labelling" that occurs that incorporates many of society's values and much of our perceptions that have grown around the often inhumane treatment we received in the recent past. It is only in the company of fellow users, or people that we have known for a long time, that the exclusion drops - the "he's OK but he's different to you and me".

I can give you numerous examples of discrimination. In fact we are just writing one of our reports on it. However, what I would like to say is that the misperceptions about us have to be challenged. We have so much to give that discrimination prevents us from giving. We lose so much confidence when we "crack up" and the attitudes of society hardly help us to recover that confidence.

We need the public to know more about mental health problems. To realise that huge numbers of people have them, and especially to realise that there is no shame in going for help when people are having problems in coping. For that we need to change the image of people with mental illness and the services that help us.

I can't go into the value of the services that other people and I use. It would take too long, but briefly -

  • I often pop in to a drop-in centre during my lunch hour. I feel secure there, I feel that I am amongst my own and that people will understand me and that I can talk to them without fear of judgment.
  • I see my community psychiatric nurse to talk to about some of my deeper feelings and to find practical ways forward in life.
  • I see my psychiatrist so that he can check that I'm OK, and to be honest, in the hope that one day he'll say its OK for me to come off my drugs.
  • Soon I'll be seeing a psychologist to see if she can help me with some of my negative perceptions about myself.

I feel very content with the services around me and would begin to despair if anyone else decided to help me. However, we are all different, we need varying levels of input and have a right to expect a choice in services that reflect our individuality.

As I said, I am in employment. That is rare for someone with a mental illness. The majority of us are on benefits. This creates a whole range of problems for us. Having problems in coping, and also living near the poverty line, can make life almost insupportable. How do you get better when you see the years stretching out in bed and breakfast or hostel accommodation?

How do you regain your motivation when much of your life is spent staring at the four walls of your room because you cannot afford to go out to the cafe or the pub because public transport is infrequent and, even with a bus pass, expensive? How do you keep physically healthy when fresh food is expensive and when it is hard to afford recreation and leisure facilities?

I have kept moderately healthy for the last few years, but then I have friends, I have work, I have a car and a house and money. I can afford good food and an occasional drink and lots of cigarettes! I can clothe myself and heat my house. No wonder I'm healthy! Equally certain, to my mind, is the fact that I would be going back and forward to Craig Dunain if I lived in the sort of circumstances many of the members of HUG have to live in through no choice or fault of their own.

I believe that I read in a recent publication that 90% of people with a mental illness are unemployed. That means that they are on benefits and in great need of the services the council provides.

We need some basic things. A simple thing is regular face-to-face contact with people, but of a special sort. Contact with people who will listen, who will not judge. Who will help us to find solutions to some of the problems we confront by having to live life the way we do, who will help us to find ways of accepting our illness, who are warm and human and who above all treat us as equals in the process that we are going through.

This is especially so on the West Coast of the Highlands where the stigma of having a mental health problem seems to be higher and where the services are so scattered.

This contact needs to be from professionals, but it needs to be when we need it rather than when we can fit into someone's timetable. Our problems last 24 hours a day and emergencies are just as likely to occur after 5 o'clock as before it. We need services that are responsive to this fact - leaving out of hour's cover to GPs is not the answer. Some of them are very good, but some others do not have much training in mental health, and it appears that the service we need in an emergency can be slightly different to the one a GP is employed to provide, and certainly requires a lot more input in terms of time than many GP's are prepared to give.

We need contact with other people in similar situations, but what that contact should be we don't know yet. We will be talking about that in the near future.

We need clear, realistic information about almost everything. Many of us find out about the side effects of our drugs only through experiencing them. Many of us discover what Craig Dunain is likely only through being admitted and many of us have only sketchy information about the illness that we suffer from. In order to make informed decisions to enable us to participate in our treatment we need to know what is happening to us, and what sort of decisions are being made about us.

Mental illness is not confined just to ourselves. Our friends and relatives are also greatly affected by the fact that we have a mental illness and they themselves need help in coming to terms with what has happened, with getting support for caring for us (if they have taken on that role), and in resolving any feelings of guilt that they may feel because we are ill.

Before I started this talk, I asked my wife about some of the thoughts she had about having had to care for me on occasions. I am afraid that many of her comments were negative and consisted of two elements.

The first is information; no one explained to her what I was going through and how she could help. She was completely ignorant of the psychiatric system; she had no idea that she could ask for the assistance of a social worker and had never heard of a CPN (Community Psychiatric Nurse).

She got very tired looking after me, especially as she was also looking after our five month old son at the time, and basically followed her instincts in caring for me. The second is that she got very angry about the way I was treated and the lack of opportunity for her, as someone who is very close to me, to say how I would probably like to be looked after.

For the final part of my talk I will raise a few questions that you might like to consider if we have any time for discussion.

One of the recurring feelings that I get when I am ill is that I have become evil and can infect anyone who happens to be near me. My wife has, on some occasions, had to restrain me from going to the police and asking to be locked away so that I don't harm other people by my presence, and I have often thought that maybe I should have to commit some sort of crime in order to be locked away from other people. I would like you to consider how you would deal with me if I turned up at a police station like that or committed a crime for that reason.

The other question I have for you is about "appropriate" adults. I believe, although I am very sketchy on the subject, that if I became involved with the police there is a requirement for me to have an "appropriate" adult present. I don't completely object to his, but I would like to say that if that occurred in a couple of weeks time while I was as well as I hope you perceive me to be I would be furious and would not co-operate.

Alternatively if the situation occurred when I was ill, when it might be valid, I would be immediately suspicious of such a person and again reluctant to co-operate or believe that they were there to help me.

These are just a couple of personal comments, but I would be interested to see how you would deal with that situation.

Thank You.


 

 


Highland Users Group
Tel: (01463 718817) — Email: hug@hccf.org.uk

 

 

 

 

 

HUG Talks - Living with Mental Illness