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It's All in Your Head:
True Stories of Imaginary Illness
by Suzanne O'Sullivan
Doctors' tales of their patients' weirder afflictions have been popular since Oliver Sacks wrote The Man Who Mistook His Wife for a Hat in the 1980s. Few of them, however, are as bizarre or unsettling, as those described in this extraordinary and extraordinarily compassionate book.
Suzanne O'Sullivan is a consultant at the National Hospital for Neurology and Neurosurgery, in London. Her patients go blind or become paralysed. Their arms wither. They suffer agonising convulsions - all without any physical cause. Take 'Yvonne' (all names have been changed). While clearing out a fridge, she accidentally gets cleaning fluid into her eyes. Her vision goes blurry, at first. Then, one morning, she wakes up, panic-stricken, to complete darkness. O'Sullivan sees her in hospital, where all the tests suggest her eyesight is intact. Her pupils react as they should. Her eyes can track objects and lock onto a doctor's gaze. Bafflingly, she even gives O'Sullivan a detailed, error-free drawing, explaining that she can 'feel the pencil marks on the paper'.
Like her colleagues, the author, who was a junior doctor at the time, felt sceptical and unsympathetic: 'We were not ready yet to understand a different type of suffering,' she recalls. As a specialist neurologist, however, she learnt to understand. This book tries to awaken that humane response in all of us.
First, she demolishes the idea that psychosomatic illness is a kind of hypochondria. It is not, because those afflicted really are paralysed or blind. For hypochondriacs, it is the anxiety about the symptoms that causes suffering, not the symptoms themselves. She reveals that doctors are reluctant to diagnose illness as psychosomatic, partly in case they missed something, but also because patients react angrily. They feel accused of fraud or madness. As a result, some search for any diagnosis except the right one, often at great cost to themselves and to the NHS. In 2011 it was estimated that the 227 most severe somatic patients in London cost the NHS more than £500,000 in one year.
The worst afflicted patient here, 'Pauline', is a case in point. By the time O'Sullivan meets her, she is 27 and has been in and out of hospital for 12 years. She cannot urinate without a catheter. Her legs have lost all sensation except pain. She has violent convulsions. O'Sullivan monitors her brainwaves during a seizure and finds they are not epileptic but 'dissociative' (ie they arise in the subconscious). She does not need a neurologist, she needs a psychiatrist. Pauline resists the diagnosis fiercely. 'She knew she would be judged,' O'Sullivan remarks, 'and she was right.'
And we don't just judge, we laugh. Consider 'Linda', who finds a lump on the right side of her head. Her doctor tells her it is harmless, but she cannot stop thinking about it. Soon she feels a tingling on her right side. Before long she loses all sensation in her right arm, then her right leg. But Linda's subconscious has made a mistake: Linda did not know that the left side of the brain controls the right side of the body, not the other way round, so she was paralysed down the wrong side. The lump could not be the cause.
Another sufferer of dissociative seizures, Camilla, falls down one day at work. Her limbs flail. Her heart pounds. She is unable to speak. Yet while lying there, helped by a colleague, she hears another walk past saying: 'Leave her alone, there's nothing wrong with her.' For O'Sullivan, that sneer is tragically wrong-headed. Psychosomatic suffering might be generated in the mind, but it is felt in the body.
As proof, she calls on the functional MRI scans used in her specialism, neurology. A non-epileptic seizure does not look the same in the scanner as an epileptic one, but it also looks quite different from one that is faked. What is not yet known, she admits, is whether the MRI scanner sees the causes of psychosomatic illness, or its effects. Neurologists still do not know how psychosomatic disorders arise, and they still draw on 19th-century theories.
Fascinatingly, O'Sullivan traces the history of her specialism back to Jean-Martin Charcot, who publicly treated 'hysterical' women in 1880s Paris with hypnotism. (He also used magnets to apparently 'transfer' convulsions between a hysterical patient's arms - and even from one patient to another.) Charcot's less showmanlike follower, Sigmund Freud, maintained that hysterical symptoms were caused by psychological conflict. There might be some truth in this. O'Sullivan notes that some 30% of people with psychosomatic seizures have experienced sexual abuse. There are links, too, to anxious or neurotic personalities, depression and mental illness. More puzzling, 70% of sufferers are women, which reflects the patients examined by Freud and Charcot.
O'Sullivan occasionally sounds like a Freudian herself. She tells the story of 'Mary', who finds herself unable to open her eyes. Later, she loses her memory. When Mary confesses that her husband is a child-abuser, O'Sullivan muses on 'the things that Mary could not bear to look upon, and the things that Mary could not tolerate to remember'. That sounds very like one of Freud's just-so stories.
O'Sullivan is more convincing when she describes how psychosomatic illnesses arise. Stress is the culprit in the popular mind, but she is more inclined to blame 'mistaken beliefs about how best to respond to changes in your body and illness'. Some people 'medicalise every sensation,' she warns, 'and that in itself can lead to illness'. That makes it sound very much like an illness for our time. (And it is incredibly common: a 2009 study of British hospital clinics found that, in some, half of patients attending had symptoms that could not be medically explained.) O'Sullivan calls one patient 'a product of the internet age' because he arrives clutching printouts, convinced he has multiple sclerosis. Diagnoses (presumably including self-diagnosis by Google) can become 'enmeshed' in the mind, she warns.
We can acquire the symptoms we learn about, it seems. The extraordinary evidence for this derives from so-called culture-specific syndromes. A Malay man stricken by 'amok' goes on a raging often suicidal spree. An Asian man with 'koro' becomes convinced his penis is shrinking into his body. Neither condition exists in the West, where people are stricken instead with irritable bowel syndrome and food 'intolerances' - which O'Sullivan clearly believes are psychosomatic illnesses. She thinks the same, controversially, about ME.
Perhaps the only weakness in this book concerns the all-important matter of the cure. We only hear about her patients' eventual treatments in brief and at secondhand - because her job, after diagnosing a psychosomatic patient, is to pack him or her off to a psychiatrist. But then psychosomatic illness, perhaps unsurprisingly, evades easy answers or easy cures anyway. That makes for an almost beautifully intriguing book but, at moments, a frustrating one as well.
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There is an unusual tone that runs through this book from page 1 to page 315 - it is of patient, compassionate frustration. It is the tone of someone who has spent a quarter of a century carefully explaining to people - very ill people - what they do not want to hear, or to medical colleagues what they do not have the training to cope with. This unwanted explanation is that the illnesses the patients have are simultaneously real but have no physical origins, and they are products of the mind.
A consultant neurologist at the National Hospital for Neurology and Neurosurgery, Suzanne O'Sullivan is the latest writer in what I think is a necessary and admirable new trend - that of physicians and practitioners sharing with readers the real experiences of their professions. This necessarily involves discussing case histories: histories which have to be disguised so that the individuals cannot be identified.
So we can be sure that whoever the person was who formed the basis of the ME sufferer, Rachel in chapter seven, he or she was not called Rachel and had not been a student on a dance course at university. But I had no difficulty identifying the underlying truth of O'Sullivan's encounter with such a person, because I have known two or three victims of the condition myself.
So O'Sullivan's 'Rachel' was a sporty, fit, high-achieving young woman who started to feel strangely fatigued during her first year at college. She would drift off during lectures and began to experience pain in her muscles and joints. Tests, including a muscle biopsy, could find no cause for her condition, and yet it worsened. Within a year or so she had given up her course and was spending all day at her parents' home, unable to move or even to eat. Her mother researched her condition on the internet and found other people with similar symptoms who were sufferers of 'myalgic encephalomyelitis' or ME (sometimes known as chronic fatigue syndrome or CFS). The discovery came as a huge relief. At last they knew roughly what was wrong, even if they didn't know what caused it.
In her introduction to the chapter on Rachel, O'Sullivan admits that 'to include ME/CFS in a book primarily concerned with the description of those suffering from psychosomatic illness is foolhardy to say the least'. This is because the reaction of many ME sufferers, their relatives and friends and the organisations that represent them, to the idea that the condition is psychosomatic - caused by the mind and not by a disease - is intensely hostile. I have experienced this hostility.
As O'Sullivan points out, this hostility arises for three discrete reasons. First is the (essentially correctly perceived) problem that while a physical disease may be susceptible to a physical cure, through drugs or surgery, a psychological condition is inevitably harder to prescribe for. Second is the feeling that while one may not be 'responsible' for a physical condition, a psychological one is somehow your own fault and is less serious. And the third is the stigma of madness that the patient themselves, or the world in general, may attach to a psychological condition. Yet, as O'Sullivan says, 'the reality of how life-destroying this problem is cannot be argued with' and it must be given the 'same respect that we offer to a physical disease'.
Yet, if the patient is utterly opposed to a diagnosis that situates the problem in the mind, then they will not want to embark upon the kind of treatment that might help them. In which case, they are stuck. Completely stuck. 'Unsticking' the patient, and the rest of us, is what, ultimately, this book is about.
ME is just one of the possibly psychosomatic conditions that patients present with. O'Sullivan begins with cases of 'pseudoseizures' - that is fits that resemble epileptic seizures, but which can be shown to have no physical origin. Her first patient, 'Pauline', has suffered 12 years of fitting and is now effectively paralysed. She has been repeatedly tested for numerous conditions, never successfully. 'You go into hospital with stomach pains,' O'Sullivan reminds her, 'and you come out in a wheelchair.' Might she now be ready to consider seeing a psychiatrist?
Pauline is not rare. O'Sullivan says that as many as a 'third of people seen in an average general neurology clinic have symptoms that cannot be explained by medical tests or examinations. In those people, an emotional cause is often suspected.' We know our minds create involuntary physical responses, such as blushing or crying (O'Sullivan does not mention some of our more indelicate parasympathetic responses), yet we resist the idea that illness could have a mental cause. We tend to believe that if the mind is involved we are either conscious of it, in which case we are con-artists and malingerers, or unconscious, in which case we are mad.
But O'Sullivan says that the proportion of her patients who are dissimulators - who are 'putting it on' - is small. Instead, she thinks that, for various reasons, our minds can express distress, without our being conscious of it, through our bodies. If we cannot recognise this possibility, then we cannot deal with it and so are fated, instead, to undergo pointless operations, to take possibly harmful drugs and - almost invariably - to fail.
As she points out, the association of the subconscious with physical illness is not new. In the late 19th and early 20th-centuries, pioneer neurologists, like Jean-Martin Charcot, psychologists, like Pierre Janet, and psychotherapists, like Sigmund Freud, studied and theorised about how the unconscious mind works. And one, very general, conclusion was that illness could be a drastic 'way out' or diversion from underlying mental distress that the patient could not confront.
However, O'Sullivan adds another kind of possibility. She notes that something like 70 per cent of patients who present with inexplicable conditions are female. Why is this? She speculates that because women are more likely to suffer traumatic sexual abuse, perhaps then physical illness is some sort of response to that. But she also wonders whether we aren't immensely vulnerable to our own suggestibility. I feel a twinge in my back. I might take no notice of it, or I might look it up online. If I do the latter, perhaps I notice another associated pain which I also half think I had. And so on.
The fact is, as O'Sullivan admits in this honest, fascinating and necessary book, that we just do not know. Perhaps, one day, with the advance of neuroscience, we will. And perhaps we won't. But, at the very least, we should keep an open mind.
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