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National Voices Forum
1999 LONDON CONFERENCE on
SELF-MANAGEMENT OF SCHIZOPHRENIA

With speakers Dorothy Rowe and ZYRA
Followed by workshops


Chair's introduction

The Chair of 'Voices', Amy Ford, welcomed the thirty or so participants and introduced the conference. The management of one's own mental health and illness was, she suggested, about new ways of helping oneself. It was different from (or additional to), working with professionals. It involved developing awareness of ourselves, and of recognising our individuality. It was potentially a form of empowerment.

1st Speaker: DOROTHY ROWE (well known author on mental health)

Dorothy started by saying that she had reached the conclusion that the psychiatric system didn't work. The best place to experience psychosis, she said, was in the less developed world, mentioning India as a good example. People there came out of psychosis better than in the West since there was less stigma. Instead people were supported and honoured during the experience, which was treated as rare and special.

Her understanding of the experiences of mental illness was based within the psychology of perception. We experience pictures of the world in our brains, making us think we are in the middle of the scene. No two people's pictures would be exactly the same. People can, for example, experience colours differently. Babies learn to structure space and distance - but they structure it differently if they grow up in a round room or building instead of a square one.

We all notice different things - what we experience is based on our past experience, and hence, to an extent, unique. We create pictures of what we think is going on. Children need adults who will accept their perceptions and help their thinking. They need to build confidence and trust in their own perceptions and meanings - without this, their mental health is at risk.

If our confidence in interpreting things is undermined, we are more likely to retreat into ourselves. "That's how we go into psychosis", Dorothy suggested.

We need to distinguish our thoughts and feelings from the external world. We may think that a voice in our head is actually coming from outside. Only recently has hearing voices been taken seriously, Dorothy said. They may, for example, be a replay of memories.

If we have had a happy childhood, we tend to have happy memories. If we haven't, we may have recurrent painful memories. But a good memory for bad experiences can be linked with the original need to remember mistakes and learn from them. This means we carry unhappy memories which can return in voices or pictures.

We have to develop awareness of lines of thought which make us feel miserable. We need to try to avoid these and learn other ways of thinking. That's the purpose of today's conference - to reflect on what we have found useful; to compare notes on what works and what doesn't. There is now a body of research that shows this can be a way to deal with schizophrenia.

2nd Speaker: ZYRA (service-user)
(also see the script of this at Looking on the Positive Side by Zyra)

Zyra took the opportunity to deliver his presentation from the stage. We could now see Zyra in all his flamboyance, with his long, fluorescent dyed hair and the silver CD he wore on a bathroom chain round his neck! He had typed his notes on to a circular scroll of paper so that we wouldn't be able to tell when the end was coming!

He said that the name Zyra was him, but not so much him right now, as what he would like to become in the future. Given that he had delusions of grandeur, he had decided to become grand - to strive after a certain style! He was seeking to use the creativity inherent in his madness to create books and music - to become rich and famous and hence grand. "We should learn to become more ourselves", he said.

One of the advantages of being quote "mad" unquote, is that you don't have to play along with all the conformity nonsense in the "normal" world.

With his paranoia, he used to think that people were looking at him. But now he's dyed his hair, he knows people are looking at him! If he looks back, it's them who are embarrassed - he used to be shy, now others are shyer! 'Having schizophrenia' is not all bad. Having realised you're not normal, you are freed to be yourself!

What do you do about 'voices in the head'? Zyra said he used to do what they told him, but this turned out not to be a good idea. Anyway, if they had been premonitions of the future, he would have won the Lottery by now! What he does nowadays is to consider carefully whether something is sensible or not.

If you are having paranoid thoughts that "they" are out to get you, or that you are under surveillance, he suggested you could deal with it by keeping the trackers busy with too much information to make sense of.

Zyra had found keeping a diary of his thoughts useful. It doesn't stop delusions, but it allows you to surprise yourself by looking back on your thoughts and at least helps you to become more consistent! Zyra had had some problems with some drugs he had tried courtesy of doctors. One had caused slowness and drooling, and he had decided that he'd rather be crazy than an idiot! Another had caused impotence as a side-effect. (This was when he thought being 'good in bed' meant being a good sleeper!)

QUESTIONS TO THE SPEAKERS FROM THE AUDIENCE

Can schizophrenia have an effect on creativity? Does it harm it or enhance it?

Zyra: I'm biased. I'd say it gives extra potential as soon as you start thinking positively. One idea is to write thoughts down, then decide later which are good ones. But there are negative things about schizophrenia as well.

Dorothy: It's possible to lose confidence in one's own insights. The hard part is implementing ideas - otherwise they just remain private. When coming out of psychosis, it is difficult to carry work through.

Is it possible to be a sufferer but have none of the symptoms of hallucinations, hearing voices or thought disorder?

D: There are lots of thought-disordered people in the world, aren't there! But there aren't any rich mentally ill people - if people are rich they are simply regarded as eccentric! A lot of 'madness' is the result of social conditions. Certain kinds have disappeared. Freud's diagnosis of conversion hysteria, for example, was common at the turn of the century. An example would be losing feeling in one arm. We know this was a psychological symptom because the feeling doesn't correspond with the way the nervous system is wired up. Anorexia, on the other hand, was rare in the 1960s, but is common now. Meanwhile other diagnoses, e.g. homosexuality, have been dropped from the American DSM manual.

Z: As far as stereotypical symptoms go, there is no absolute proof that someone has schizophrenia in the way that there is for someone who has diabetes. I don't personally need a psychiatrist to tell me I have it, but there may be some people who think they have it when they don't.

Why is it that carers are often not informed how to cope when people are discharged?

D: This is a need that has only recently been recognised. Research by Prof. Leff had shown that if patients went home to people who were nice to them, they did better than if they were nasty! Many parents can be emotional, but Leff says this may be triggered as a reaction to the illness. Family therapy helps to make people aware of how they are reacting, and thus can help to reduce the likelihood of relapse.

Is there a genetic side to it?

D: Psychiatrists say there is, but remember, if there weren't any illnesses they would be on the dole! Steve Jones, Genetics Professor at UCL writes (in 'The Language of Genes') that it is nonsense to say depression or schizophrenia is in the genes. And Prof. Susan Greenfield at Oxford considers we will never find a gene for schizophrenia, since what happens to an individual depends on the environment.



WORKSHOPS

Three workshops took place. A representative of each gave feedback to the conference:

Workshop 1 had a focus on non-medical approaches as a theme. Two important themes came out of this discussion: firstly, finding work which was appropriate to people's intelligence level, and not simply menial. Secondly, the role of good nutrition.

Workshop 2 was general. The feedback to the plenary session drew attention to the fact there are times when we have energy, and times when we are thoughtful. But we can do different types of thing according to which sort of mood we're in. Keeping a diary and making lists of things to do can be helpful. Some people are able to manage their own medication but, to be able to do so, they need it in oral form rather than by injection. "Be yourself, and don't worry what people think!"

Workshop 3 had negative symptoms as a starting point. The workshop had started be listing some examples of negative symptoms, and came up with depression, apathy, lethargy, shyness, poor concentration, low self-esteem (perhaps as a result of some of the others), being inward-looking, and, possibly, poor memory.

Experiencing these problems made it harder to fit into a society where employers demand enthusiasm and energy. It was easy to make excuses to not do things, and the system could even seem to encourage this. There were, though, a number of employment projects seeking to help mental health clients. Work could help develop a positive self-image and self-esteem.

The issue of whether to disclose a past mental health problem was discussed, and whether there will always be an associated stigma. The experience of mental illness was alienating, and difficult to share. Groups and some daycentres and churches were found to help, but sometimes there was a risk of trying to take on too many of other people's problems. It was noted that there was often a lack of such facilities in rural areas.

Depression could be repressed anger. Sometimes feelings could be expressed through role-play drama. Some other activities which people found useful were reading, working part-time in a charity shop, relaxation exercises, college classes, and assertiveness and problem-sharing groups.


Amy Ford (chair) emphasised the importance of self-help in seeking to improve our quality of life. Psychiatrists often didn't even mention the kind of things we'd talked about!