Iatrogenic disease: do medical labels make you sick?

In themselves Alz-ers may know they are likely to recall a name moments after forgetting it; they may forget where they left the pen used five minutes ago but soon find it; a familiar name drops out so they wait. They do not deny memory loss, they accept it as an inconvenient truth and adapt to it. It may be more or less normal for their age-group; it is destructive for an observer to emphasise it as a weakness. The Alz-er is not mad. He learns to compensate as the body so often does. It is like travelling to another country and working on new language, initially a struggle.

Of course, the condition may become worse, but this can be delayed by intelligent, knowledgeable and sensitive handling. The patient’s body may die before his brain. Giving inconvenient behaviour a ‘scientific’ name in a foreign language runs the risk of making it seem more pathological, madder than necessary thus raising the anxiety level. Using a German term in a non-German culture may show the doctor is well educated but is unlikely to help the patient. With Alzheimers there may be no cure, but care needs to be taken to alleviate whenever possible. In gentler eras children read yarns in comics about the ‘absent-minded professor’, a benign figure. NEW APPROACH A man in his eighties, formerly a teacher, lived alone, did his shopping without a car, kept the house clean, washed and ironed his clothes, made his own meals, visited the library often, remembered when and where he arranged to meet family and friends, caught the right train or bus to shops or the city, kept in touch with distant family by mail and phone, travelled interstate, paid his bills.

And carried round the incurable stigma ‘Alzheimers’ he was blessed with in hospital.

Possibly the technical name might point the way to useful medication, lifestyle changes, mental or physical exercises. But it also gave off a stench of fear, mystery, pessimism, like the old word ‘lunatic’, something to be feared, avoided.

Not long ago ‘lunatics’ were chained to institution walls and shown off to visitors.

Doward reports on Eleanor Longden who heard voices and was told she was a schizophrenic who would be better off having cancer. Her breakthrough came after a meeting with a psychiatrist who asked her to tell him about herself. She said ‘I just looked at him and said “I’m Eleanor, and I’m a schizophrenic” and the psychiatrist in his quiet, Irish voice said something very powerful:

I don’t want to know what other people have told you about yourself, I want to know about you.

It was the first time I had been given the chance to see myself as a person with a life story, not as a genetically determined schizophrenic with aberrant brain chemicals … and deficiencies … beyond my power to heal.

Longden is now pursuing a career in academia and is a campaigner against diagnosis.

Doward: ‘the DCP believes the world of mental health treatment would benefit from a paradigm shift so that it focused less on the biological and more on the personal and the social. In essence, instead of asking “What is wrong with you?” we need to ask “What has happened to you?” ’

In the Guardian Weekly of 24 May 2013 Oliver James added another dimension:

A student friend of mine”, he wrote, “started claiming she was being controlled by electrical impulses beamed across the city … She spent hours in the bath cleaning herself.

Following her removal to an asylum, her parents arrived to collect her possessions. Nearly all her (mostly clean) clothes were deemed so ‘soiled’ they would need to be burnt. The room was obsessively clean. Her father was a health inspector … she had inherited genes predisposing her to obsessive rituals and to psychosis. The model does not entertain the possibility that the health inspector’s intrusiveness distressed her or, as it turned out, that he had sexually abused her … 13 studies find that more than half of schizophrenics suffered childhood abuse ..

23 studies show that schizophrenics are at least three times more likely to have been abused than non- schizophrenics.

Madness memoir

A remarkable and bravely honest book, Madness: A Memoir (Viking / Penguin Books 2013) was written by medical doctor Kate Richards and records in graphic detail her own psychotic episodes.