Schizophrenia: The shame of silence, the relief of disclosure

I do not fear schizophrenia as I once did, or maybe it would be truer to say that I have a changed attitude to madness. It is not the death sentence it once appeared. It is possible to survive and be happy.

This is not to understate the calamitous nature of the disorder. But I know now that there is no rigid barrier between the sane and the insane. Some 15 per cent of people admit to hearing voices without anybody suggesting they are mentally ill. And even when Henry appeared to be most tightly gripped by psychoses, and my wife Jan and I were at our most despairing, he never entirely lost his hold on reality.

People fear madness because loss of reason in themselves or others suggests they are less than human, perhaps even demonically so as in the world of horror films. This state of mind is vividly described by Vincent Van Gogh after he entered a mental hospital in the South of France in 1889. He wrote: “Although there are a few people here who are seriously ill, the fear, the horror I had of madness before has already been greatly softened.” To his surprise, he found that his fellow patients might shout and howl in the night, but they were friendly, helpful, considerate, interested in his painting and had lost nothing of their humanity.

The fear induced by psychiatric illness among those suffering from it no longer has an equivalent in the way people react to physical illnesses, with the possible exception of Aids. The very diagnosis of schizophrenia has a depressing and demoralising effect that is self-fulfilling. It opens up the prospect of stigma and inability to lead a full life in terms of a job, marriage or children.

Perhaps one of the simplest and most effective counters to such fears is people talking more and more about their mental illness or that of a relative. As I wrote in an earlier piece, one of the things that astonished me most when Henry was first diagnosed with schizophrenia in 2002 was that I turned out to have so many close friends with family members suffering from severe psychiatric disorders who had kept it a secret from me for years.

Indeed, mental illness remains a family secret in the 21st century in the same way that Victorian families kept quiet about a member who was gay. The motives for silence are often understandable and justifiable in each specific case. Families want to avoid a member’s being stigmatised, denied a job or otherwise treated as a pariah. One psychiatrist told me that he always advises people who have had a psychosis to avoid mentioning this when applying for employment in the NHS if they expect to get a job. Coming out did gay people nothing but good in terms of public acceptance and political leverage, and the same should be true of the mentally ill.

Overall this silence about mental illness has had profoundly negative effects. It is self-isolating and degrading for a person with psychoses, and refusal to speak can transmute into a sort of shame. People with such a disorder are frequently reliant on their families, all the more so since mental asylums and community centres have been closed down. But unless the mental illness is admitted and explained it is difficult to mobilise the support of families and close friends. There may be fear of how these will react, but in my experience one gets far more sympathy and support than one expects.

A reason for this is that, while a large chunk of the population knows nothing about mental illness, a tragic number knows a great deal from harsh personal experience. Again and again I have talked about Henry to a taxi driver or shopkeeper or friends having a drink and they reveal they have relatives with severe psychoses, but I am almost invariably the one who has taken the initiative in raising the topic. This reticence enables stigma and demonising stereotypes to flourish without contradiction, though an estimated one-third of families in Britain are affected by mental illness.

Ten years ago when Henry had his first psychosis, I used to feel that knowledge of mental illness was at the same level as physical illness in the early 19th century. This was never quite true since crude medications that controlled but did not cure psychosis had been discovered in the 1950s. One friend who took his son to a psychiatrist in 1995 was told with disarming frankness by a consultant who prescribed an anti-psychotic drug that “there is no consensus about the causes of these phenomena, but oddly enough there is consensus about the treatment”. This generalisation would no longer be true today. The complex mesh of social, environmental, psychological and biological causes of mental illness is beginning to be understood, as are improved ways of countering them. What has not changed much is the ignorance and fear that prevents the proper treatment of the mentally ill in modern Britain. This should be one of the scandals of the age. Illnesses of the brain and mind can bring out the best in people, but in individuals, society and governments it can bring out the worst.

The record is dismal. There were justifications for closing down the old mental asylums as dumping places for outcasts, but not for failing to provide facilities to replace them. The mentally ill are uniquely vulnerable to damaging but unproven fads and fashions in treatment, be it electric shock treatment or Care in the Community. Governments play along with, and spend money supposedly averting a vastly exaggerated public and media perception of the risk of violence from the mentally ill. The remaining psychiatric hospitals are being turned into prisons like 18th-century bedlams, where even the most mentally disturbed person would not want to be. Even where treatments have a record of success and money-saving such as the Early Intervention in Psychosis Units, introduced in the last 10 years, they are being cut back rather than expanded. There is little attempt to explain to teenagers the dangers of cannabis.

My experience of the mental health system is that it is not really a system. It is rather an accumulation of ill-considered policies and half-implemented reforms. It lacks leadership and direction at every level. The heroic efforts of good-hearted and dedicated professionals are stifled by a remote managerial bureaucracy. Authority in mental hospitals is often so fragmented that it is impossible to know who is in charge. Often Jan and I thought our most useful role was telling one group of doctors and nurses what another such group was doing and saying about Henry.

These failings had practical dangers for Henry that might have been fatal. He was in psychiatric hospitals to keep him safe and make sure he took his medication, but too often they did neither. Zerrin Atakan, the psychiatrist then heading the National Psychosis Unit at the Maudsley Hospital in south London, who later resigned in frustration, says “doctors have lost all their powers [to management]. I did not even have the power to have the doors locked.” Henry disappeared and was found many days later by lifeguards in the sea underneath Brighton pier.

None of these faults are ancient history. They are confirmed as are many more by a report published this month by the Schizophrenia Commission on the treatment of people with schizophrenia, entitled The Abandoned Illness. Its chairman, Professor Sir Robin Murray, says that “what we found was a broken and demoralised system that does not deliver the quality of treatment that is needed for people to recover”. Mistreatment of the mentally ill is a true test of any community because they are its weakest and most voiceless members and it happens today, not through ignorance, but because nobody cares to do much about it.

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