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Iatrogenic disease: do medical labels make you sick?

By Andrew Mann - posted Wednesday, 3 July 2013


If a chap is alone most days because he is single, divorced, unemployed, retired, aged, or any combination, he may feel down in the dumps at times. But that does not necessarily mean he is mentally ill, a ‘depressive’, with no existence outside the clinical text-book. If medical professionals only see the pathology and not the whole person he may suffer the effects of stigma added to the original problem. He still wants to be seen as a normal human, sometimes happy, sometimes not, rather than only a clinical stereotype.

Normal life varies for different people. Medical labels, especially with foreign names therefore of uncertain meaning, can imply folk living unusual lives are ‘sick’, ‘abnormal’, ‘need treatment’, thus reducing their sense of autonomy and self-confidence. If someone disturbs the peace blowing a bugle at 2am then public action may become necessary, but not permanent stigmata.

There has been a flurry of discussion in medical circles about the dangers of using diagnostic language loosely, to the detriment of a patient and patients generally.

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Sick Definition

Australia’s ABC Radio broadcast a discussion on 20 May 2013 entitled Normal Behaviour Defined as MentaI Illness. Presenter Emma Alberici interviewed Dr Allen Frances, supervisor of the latest edition of the American Diagnostic and Statistical Manual of mental disorders (DSM). Launched in 1952 with 106 conditions identified as mental illnesses the number has now more than tripled.

Alberici pointed out that Frances now condemns much of his own work. ‘In his new book Saving Normal Dr Frances argues there is now an increasing tendency to chalk up life’s difficulties to mental illness … We were very worried about diagnostic inflation in psychiatry and excessive treatment … but our conservatism was absolutely overwhelmed by drug company marketing’. Frances feared the DSM would turn what we consider everyday normal problems into mental disorder with excessive use of medications, harmful and very costly. For example turning normal grief into ‘major depressive disorder’, the forgetting of old age into ‘mild neurocognitive disorder’, worrying about your cancer into ‘somatic symptom disorder’, temper tantrums in kids into ‘disruptive mood disregulation disorder’.

“Attention deficit disorder will be virtually ubiquitous and an easy means of getting stimulant drugs for performance … and recreation”, he added.

Children

Children are particularly difficult to diagnose, wrote Frances: ‘A kid may look disturbed this week and very much better two weeks later. So we should be especially cautious … there’s been a loosening of diagnosis and with it excessive use of medication for children who very much will likely do better without it. I believe in stepped diagnosis, caution, first do no harm, watchful waiting … get second opinions … see how things work out over time.’

On Attention Deficit Disorder Frances said ‘in its classic and severe form ADD definitely needs to be treated promptly. But the tripling of rates … means that many kids who don’t need diagnosis are being treated ... We’re turning being young into a mental disorder … We should be spending less money on drugs … [and] more [on] smaller class sizes and physical education so that kids can blow off steam.’

He said prevention is a wonderful idea ‘but what we‘ve learned from the last 35 years … is that very often the intervention is worse than the disease ... screening tests … are often more harmful than helpful … (in psychiatry), many of the interventions are themselves quite dangerous, especially medication.’

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Death

Dr Frances said particular care needed to be taken with people grieving following bereavement: ‘If you feel sad, … lose interest, appetite, have trouble sleeping, less energy just two weeks after losing the love of your life, that can be diagnosed as major depressive disorder and drug salesmen can try to convince doctors that medication is indicated. This is substituting a superficial medical ritual for the deep and important human cultural rituals around death that have been built up over hundreds of thousands of years. It’s normal to grieve. We shouldn’t be calling this mental disorder. We shouldn’t be treating it with medication, unless it’s severe’. Frances said there are symptoms that are a normal human response to the horrors of war: ‘But calling it mental disorder … often makes the problem worse.’

On the title of his book How do you save normal? Frances said ‘We need to tighten the diagnostic system … control Big Pharma … change insurance policies that encourage doctors to diagnose early in order to be reimbursed for the visit. Watchful waiting for mild problems often is the very best policy.’

Medical labelling as a punishment

A 75-year-old man is taken to a modern hospital with a broken leg, a big enough problem in itself, then he cannot immediately remember his son’s name and address or pass the common test of counting backwards from 100 in sevens. So he risks being assigned to the bin marked ‘Alzheimers’, with its odour of senility, memory loss, even insanity to add to the disadvantages of his wrecked leg. The patient now has more problems than he started with: the ongoing ageing process, the newly damaged leg, and now this mysterious new diagnostic label with a foreign name sitting like an unexploded bomb. A kind of spiritual life sentence. Does this new label help him feel better or worse? In his daily round Mr Brown does not feel sick, friends treat him as a normal person although none deny they are all getting older. Memory glitches go with the territory, but they cause giggles rather than despair. It is just one of many time-related phenomena such as no longer being an energetic footballer but instead moving like a tired old cripple.

Inconvenient yes, funny sort of, but pathological? No. It is all part of normal. Oldies laugh about their mistakes, one lady giggled “I’m going daft!” Forgetfulness is worse for a person living alone because there is no-one to check, question, correct, remind, comfort, remove psychological hazards. For oldies forgetting is normal behaviour, so derogatory labels like ‘Alzheimers’ can do harm, add stigma, just like other words denoting intellectual, racial or other differences.

Abandon psychiatric categories?

DSM-5 was reported in The Guardian Weekly by Jamie Doward: ‘the American Psychiatric Association’s increasingly voluminous manual will see millions of people unnecessarily categorised as having psychiatric disorders.

For example, shyness in children, temper tantrums and depression following the death of a loved one could become medical problems, treatable with drugs. So could internet addiction … A disturbing picture emerges of mutual vested interests, of a psychiatry industry in cahoots with big pharma’, and Doward quotes Jon Ronson: “Is it possible that the psychiatric profession has a strong desire to label things that are essential human behaviour as a disorder?” ‘And now, in a significant new attack, the very nature of disorders identified by psychiatry has been thrown into question … the UK’s Division of Clinical Psychology (DCP), which represents more than 10,000 practitioners … published a statement calling for the abandonment of psychiatric diagnosis and the development of alternatives that do not use the language of “illness” or “disorder”.

Mary Boyle, emeritus professor at the University of East London, believes the DCP’s statement marks ‘a dramatic shift in the mental health debate: “The statement isn’t just an account of the many problems of psychiatric diagnosis and the lack of evidence to support it, it’s a call for a completely different way of thinking about mental health problems, away from the idea that they are illnesses with primarily biological causes”'.

Not surprisingly this has given rise to considerable debate about the nature of psychological ill-health.

Paul Farmer, chief executive of Mind said receiving a diagnosis can be extremely helpful, can provide people with appropriate treatments and access to other services. But consultant clinical psychologist Lucy Johnstone said:

Strange though it may sound, you do not need a diagnosis to treat people with mental health problems … there is no evidence these experiences are best understood as illness with biological causes

On the contrary there is now overwhelming evidence that people break down as a result of a complex mix of social and psychological circumstances – bereavement and loss, poverty, discrimination, trauma and abuse.

Growing older

A person who does not go to work or for other reasons is alone every day, with few opportunities for conversing, laughing, joking, reminiscing with others, can easily feel stressed, sad, lonely. This is not pathological but normal in the circumstances.

Everyone deteriorates with age or when in unhealthy circumstance so one way or another needs human support more than a diagnostic label, especially one with a sad reputation like ‘Alzheimers’.

All humans have to adapt to new circumstances throughout life. Growing old is about learning to compensate, adjust, physically and mentally, to decreasing strengths and abilities. You read your mental-physical state and adopt strategies accordingly.

A technical label like ‘Alzheimers’ may boost a physician’s esteem but can have the opposite effect on the patient, who may feel put down, no longer in charge of his own life, his own body, his own mind, way into the future.

He may prefer to hide the label than ask for help.

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.

The book cover quotes her:

The thing with psychosis is that when I’m sick I believe the delusional stuff to the same degree that you might know the sky is above and the earth below.

Madness is a real world for the many thousands of people who are right now living within it and dying within it.

It never apologises. Sometimes it is a well of dark water with no bottom, or a levitation device to the stars. It takes away the rational minds of ordinary people. It takes our hearts, knowing death so well. This world was once my pair of horns, my pair of wings. Now we regard each other with caution and, yes, healthy respect.

Both bruised but very much alive.

We are moving away from the notion that well-educated people know all they need to know to help sick people and towards a stage when we encourage patients to speak up for themselves. This yarn is a small attempt to bring people with psychological problems in from the cold. How better to finish than with another quote from Kate Richards’ own extraordinary experience: ‘This book is for everyone living in this world, for everyone touched by this world, and for everyone seeking to further his or her understanding of it, whether you think of madness as a biological illness of the brain or an understandable part of the continuum of the human condition. Either way we – the people who inhabit this world – are in every respect just like you. We want to live well.’

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About the Author

Andrew Mann is the nom-de-plume of a patient who has borne some of the epithets handed out by the medicalisation of normality.

Creative Commons LicenseThis work is licensed under a Creative Commons License.

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