After reading Cure I found myself with a real appetite for reading books about medical science. I think the non-fiction books I love have distinct categories and themes: nature (of course), travel, psychology and medicine. I find the human experience quite fascinating and I think, in many ways, medicine hasn’t progressed as far beyond the dark ages as we like to think; though I think doctors do an excellent job in navigating, in so far as it is possible, the vagaries of the human body. We are a thing of mystery. It’s All in Your Head is a book about psychosomatic illness, which recently won the Wellcome Trust Prize and as a person who experiences hallucinations, with a son who experiences Alice in Wonderland syndrome and a husband who can lucid dream at will, the concept of exploring the effect the mind can have over the body is one which is absolutely fascinating to me.
Susan O’Sullivan is a neurologist, and through the book she shares some of her own encounters with psychosomatic illness including medical conditions such as dissociative seizures, psychosomatic blindness, hysteria (more focus on the history here), Munchausen’s Syndrome, self-induced illness and chronic fatigue syndrome. Where a diagnosis of psychosomatic illness will be given is generally where all other options have been discounted, and perhaps the one O’Sullivan encounters most is dissociative seizures. As a doctor her focus is on the mechanics of the body (something which, as was mentioned in my review of Cure, doesn’t always lead people to the cure that they need). As a neurologist she focuses on the brain and nervous system, a system which has a quite defined mechanical/electrical functionality with predictable outcomes e.g. you hit a reflex with a hammer and it will react, showing that the mechanical system is functioning. But the part O’Sullivan focuses on in this book is the brain, the most complex instrument we know of and the least well understood. As she explains here:
“A nerve is like a living piece of electrical wire. Remove the nerve from the body and preserve it and it will transmit its message as if it still existed in the living human being. It doesn’t need the brain to function. A nerve’s response is standardised but how we react to the message it transits is not. Somewhere inside our heads the message is interpreted, and it is in that interpretation that we become individuals again.
Our experience of each sensation is our own. We like the smell of a perfume or we don’t. We love to have our feet massaged or we cannot bear for our feet to be touched. We each have individual thresholds for sensation, differing pain tolerance, a fondness for cold or for heat, varying experiences of taste and smell. And just as we all feel pain differently, fatigue too is an experience which is uniquely ours.”
Who doesn’t understand that this is true? I like my bacon crispy, I find the sound of a downpour invigorating (being out in a downpour makes me giggle) and sometimes I see things that aren’t really there. My husband likes his bacon chewy, he can sleep on demand and he enjoys Stargate Universe in a way which is incomprehensible to me. We are all different. Is it possible, then, that some kind of trauma or experience can cause a brain to become badly configured (to use a computing term) so that it misinterprets signals, inflating some, deflating others, and this results in a genuinely debilitating illness from which a person can only recover with the right brain re-training? I think if it is put in this context, most people would understand that psychosomatic illness is not ‘all in your head’ (though in a sense it is), but is rather a genuine illness which people are suffering from and for which the right treatment may be psychological rather than physical. And this is very much the focus of the book: a reshaping of our understanding of psychosomatic illness not as something we’ve made up or imagined, not something over which someone has conscious control, but rather a cause of genuine suffering for which sufferers need care and empathy, not dismissal or lack of compassion. And who hasn’t experienced a psychosomatic symptom? I always found it funny that whenever I discovered head lice on one of my kids, my scalp would immediately start itching even though I never once picked them up (hair dye has some uses). And if I mentioned it at work, I could look around and in moments I would see several people scratching their heads even through there couldn’t possibly be anything there. Yet we all felt the itch anyway. And yawning is catching. Why? No one really knows. Psychosomatic. The cause doesn’t ‘exist’, but it feels very real.
The problems of psychosomatic illness, O’Sullivan poses, are two-fold. The first is in the medical profession itself. There is a shying away from psychosomatic illness. Doctors are afraid of, and unwilling to give a diagnosis of psychosomatic illness, and even if they’re willing to take that step they can offer little or no cure and the patient is often dismissed. The problem here is that medicine / science (particularly Western medicine) is predicated on the idea that every illness must have a verifiable, repeatable and, often, external and most importantly explainable cause for it to be treatable and real. That last word is, perhaps, the biggest problem that underlies the idea of psychosomatic illness, that it is somehow not real. As O’Sullivan refers to here:
“I hear the world real used over and over, as if something that cannot be measured cannot be real. But the world is full of things we cannot see but either know or believe to be real. Our thoughts are vivid and constant but nobody knows how they are generated; they can’t be seen, smelled or touched but it wouldn’t occur to us not to believe in them. Dreams are the same; we all have them but can only speculate about how or why they occur.”
This issue is compounded, then, with the question of competence. What if the doctor has simply missed something or got it wrong? What if medical science hasn’t yet progressed to a place where it can understand what has gone wrong? O’Sullivan admits that this is a real problem for doctors. They do not want to admit that they have found nothing wrong in a patient who is clearly suffering a debilitating condition. And yet if all their tests have exhausted the idea of an external or functional cause, what then is left? It is left to the vagaries of the mind, that organ so impossible to understand. Easier for a doctor to dismiss a patient as ‘healthy’ than to admit they have failed to help them. This is a problem O’Sullivan believes the medical profession has to work on and she includes herself in this equation. That the medical profession is not always very compassionate or understanding in the face of psychosomatic illness is another of O’Sullivan’s admissions, and she notes this as another thing which really needs to change.
The second problem lies in the stigma of a diagnosis of psychosomatic illness. It says to them that they have imagined their illness, that there is nothing really wrong with them. How do you explain your inability to walk, your seizures, your irrepressible tiredness, your blindness, your sickness to a loved one or your work colleagues as existing only in your head? Does it mean you’re insane? These are real difficulties to overcome, and suggest that you can simply think yourself better so why don’t you? This is the perception of the person receiving the diagnosis and, quite probably, the perception of those around them. Psychosomatic illness is socially unacceptable; sufferers are perceived as fakers or frauds. This, if anything, is the thrust of the book. That we have to think differently about psychosomatic illness, stop treating it like a fictional or made up syndrome that people have control over. I have no actual control over my kidney function, and it is possible that a traumatic event could cause my brain to shift my blood pressure into overdrive which will damage my kidneys. Why do we think, then, that someone who has dissociative seizures can simply stop them by imagining they’re not real? Throughout the book, O’Sullivan states and reiterates this point. A psychosomatic illness is real: it causes genuine pain to its sufferer. It is no different to a broken leg or an epileptic brain, the sufferer is not in control. The treatment won’t be pills (though after reading Cure, I wonder if there is a role for placebos in such treatment) or a plaster cast, but rather counselling or psychological treatment. But because the patient hears ‘it’s all in your head’ the prospect of them taking up that treatment regime and recovering are slim. Instead they will continue to hunt around for a ‘real’ cause, trying treatments and pills that in themselves can do lifelong damage if the illness they are designed to treat does not exist in the patient. For people with psychosomatic illness to have a chance, there needs to be a change in social perception of such illness and this change needs to be in the general public and the medical profession. As O’Sullivan explains here:
“If we really want this situation to improve then we each have a contribution to make. There is room for change in all of us. Doctors should be less afraid of this diagnosis, more willing to confront it and more compassionate to the sufferers. Medical schools should teach their students about this disorder, create better doctors. Medical professionals need to stop placing this unqualified diagnosis right at the bottom of their list. Certainly this is a diagnosis which is left over when tests are normal and nothing else fits, but why should that detract from the disability and suffering it causes? Instead of appearing as a footnote in medical textbooks, psychosomatic disorders should be acknowledged as a serious diagnosis in their own right. But most of all society, the general public – you! – need to stop regarding symptoms of this sort as in some way less ‘real’ than those associated with other diseases.”
I found It’s All in Your Head a fascinating and compassionate book. Rather than dismissing people suffering from psychosomatic illnesses, O’Sullivan asks us to treat them differently, to stop thinking about such illnesses as ‘not real’ or ‘imaginary’ but instead to focus on doing the things that will help sufferers recover. Removing the stigma of the label and trying to understand the true underlying cause of the illness would go a long way to improving outcomes and enable people to explore psychological treatment without it resulting in a diminishment of that person’s self-esteem. We see the same problem in the treatment of mental illness and depression, and psychosomatic illness is one step further removed from that because of the stigma of it being perceived imaginary. But our understanding of, and control over, the brain is not that refined. O’Sullivan, through this book, seeks to remind us of that and asks for compassion and kindness in place of sneering dismissal. And maybe at some point in the future the medical profession will progress to the point where all illnesses are able to be forensically unpicked and an external or functional cause will be found for everything, O’Sullivan concedes that they do not have all the answers yet and it is always possible a diagnosis of psychosomatic illness could be wrong. But if we stop thinking of it as something shameful and false, perhaps in the meantime people might receive treatment and hope rather than dismissal and shame. And that, surely, must be a better way.
It’s All in Your Head is published in UK by Chatto and Windus