The discussion about a new name for schizophrenia gives us patients an opportunity to present afresh what our condition is really like, warts and all. It gives us the chance to present a more accurate picture — to be honest and open and get away from the misleading and mystifying image of a split mind or split personality.
In this way we can tackle inaccurate and often sensational reporting by journalists and editors working for newspapers, radio and television.
We need to emphasize that some of us — but not all — are on a recovery route, although for the large majority a complete recovery is not attainable.
Some of us take our medicines faithfully; some of us do not need to; and some of us who do need to, do not take them: maybe they have been frightened off by a stigmatized label. Labels can be dangerous and we need to be careful with them!
Some patients do not take their medications because they refuse to comply with what they experience as the authoritarian tone of a stern psychiatrist. Adherence to one’s prescriptions will be greatly encouraged by a gentler, less pathological-sounding name for what is not a specific illness anyway, but has the nature of a syndrome. We need a name that is not misleading and does not borrow the stigma of an earlier era.
The availability of modern antipsychotic medicines has made a difference for those who have been seriously ill — as I have been on several occasions. The schizophrenia concept was developed at a time when less was known about the condition, and when treatment methods were even more crude and hit-and-miss than they are now.
Modern medicines do not just sedate the patient, but help him or her to have a better sense of reality. Some antipsychotics are not even sedatives but actually stimulating – the art is to achieve the right balance. In my case this is done by combining half a dose of a sedating antipsychotic with half a dose of a stimulating one.
Recovery from a psychotic state is possible and is achieved by most patients: there remains a weakness like a broken bone which has mended but is susceptible to strains.
Many patients, like me, take the medicines: I have found by bitter experience I need them. I have stopped taking my medicines several times and have each time had to be re-admitted. After resuming treatment and after recovering over a period of weeks and months I have been able to function moderately — but only moderately — well. I am still over-suspicious and tend to second-guess other people’s intentions and motives.
My handicap is not just due to the label. I am aware that if I had not had an Achilles heel I would have had an even more successful career than I have in fact had: I would have been an acquisition editor instead of what was described at a publisher’s party in my presence as a ‘mere’ desk-editor.
To be better understood, we need to explain from the point of view of the consumer precisely what one might, for want of a more colloquial, conversational but accurate alternative, call ‘aberrant salience’, in which salient details stick out in an inappropriate manner – the fact that when I saw red tooth mugs in the mental hospital this told me it was a communist establishment; that when I saw the bushes by the side of the road they were showing me the way to go; the fact that when I saw the logo outside the fishmonger’s shop I saw something that was not there…..
‘Aberrant salience’ would be the certainty that the voices on the radio are speaking to me; that I was personally involved in the 1980s in the cold war between communism and capitalism and paradoxically, at the same time, with Roman Catholicism; that the thoughts in my head were put there by three computers; or, during an earlier psychosis, by the hypnotism of my tutor. The thoughts were not about hurting other people, but about self-harm, about driving my car into the river, for example; and that I was a sort of latter-day Jesus Christ.
Most patients who have been diagnosed with schizophrenia are in remission, not in a state of psychosis. And sometimes people are wrongly diagnosed, for instance when people experience hallucinations without being ill as a result.
There are people who hear voices when there is no radio etc. who are not sick; people who have strange, waking, dreamlike experiences who are not in need of care and attention by mental health services.
This is a continuum with the general population with frankly sane at one end and honestly crazy at the other. As with most things there are various shades of grey in the middle, although that does not mean to say there is no black and white at the extremes.
The stigma is unfair because those of us who have been diagnosed with the inaccurate, derogatory diagnosis of schizophrenia are not all in the same boat. And the problem is made worse by the fact that the same boat they are unwisely trying to put us in is a boat that has holes in it.