Imagine suffering seizures and being told they are caused not by epilepsy or any of its cousins, but by your own mind. Imagine being paralyzed and told that all the tests prove clear and your brain and nerves are normal, that the only possible cause for your illness has come from your head. Imagine waking up blind, and no one knowing why.
It is these stories of psychosomatic illness that make up Suzanne O'Sullivan's new book, It's All in Your Head. A neurologist for 20 years, O'Sullivan looks at real-life cases of paralysis, blindness, seizures, and urinary tract infections that have occurred because of psychological causes, rather than physical.
Last week, O'Sullivan spoke about her book at the Edinburgh Book Festival where I had traveled to meet her. During her talk, it became apparent that she is a nervous speaker—her voice shook and she moved her hands a lot. Like tears, or laughter—the two physical responses to emotion we recognize best, and the ones O'Sullivan chose as chapter headings to bookend her case studies—shaking is a physiological response to a psychological trigger. It is not one that we doubt, or question the cause of.
But in the fields of diseases, or medical conditions without a clear root, the longing for answers is even greater. In looking for physiological answers for their ailments, patients with psychosomatic disorders are focusing their attention away from the true issue, says O'Sullivan. This is something she hopes to change with the help of other doctors. And she hopes that this change might begin with her book.
VICE: The title It's All in Your Head is rather controversial. What was behind it?
Suzanne O'Sullivan: It is controversial, but if you separate it into the title and the subtitle, which is "True Stories of Imaginary Illness," then I think it explains it a little more.
What we're trying to do now in neurology is to move away from the brain and mind as being separate things. They're all one organ, and they're all in your head. That's what is behind the book: the brain and mind are not separate.
Yes, I see it symbolizes that, but also in being controversial does it lead people to pick it up?
I don't think we had any desire to make it controversial at all. You find these things out afterwards. Our feeling was, 'Brain, mind, it's all in your head.' I see it's been taken in a different way to that—I've had that reaction a lot, and it's very reasonable, but controversy was not our intention at all.
You've spoken about the stigma surrounding these illnesses—even within the medical community where practitioners fear labelling an illness as dissociative [the word doctors use for psychosomatic illnesses]. You recount one incident where you were sure a patient's seizure was dissociative, but when you proposed this a fellow doctor was angry, shouting, "No way is that child faking her seizures."
We never say "faking." No one's faking anything. It's subconsciously generated so it's never faked, except once in a blue moon.
I gave this diagnosis to Pauline, a girl who had 12 years of illness from the age of 15, beginning with urinary tract infections, turning to joint pain and limb weakness and leading to paralysis and seizures. When I say, "Have you considered the possibility that this physical illness is not all physical in nature?" people like Pauline get extremely angry.
But if another doctor avoids this diagnosis so as not to anger or upset the patient, or because they think it is insulting, that has big implications. Doctors are more worried about getting, for example, a diagnosis of epilepsy wrong than of getting dissociative seizures wrong, because they don't realize the harm in that. But they need to. If you miss a diagnosis of dissociative seizures the person will probably end up taking toxic drugs they don't need. There is great difficulty in giving up the diagnosis of an organic disorder and replacing it with a psychosomatic disorder.
How do you cope with making people angry?
I have to be very careful because I know I'm giving them news that is very difficult to take. If I give the news badly or if I don't prepare the patient adequately, sometimes they get angry and they leave, which is exactly what I don't want them to do because the minute they leave then nobody can help them any further.
People have difficulty accepting [that their illness is dissociative] and the problem then is to get them to consider whoever it is who could actually help them; this could be a psychiatrist, a psychologist, or a physiotherapist.
You say the power of suggestion is strong, almost something which feeds these illnesses. With that in mind, I wondered if people googling their symptoms added to this?
I don't think the internet has changed things enormously. The problem was always there. Before the internet you learned about medical things from watching something on television or reading it in the newspaper, so I do think that the power of suggestion is important.
For example, there was that Cryptosporidium outbreak in Lancashire. Once people know there's a bug in the water, and you need to boil it, there will be an increase in people going to their GPs thinking that they are sick because of this.
Illnesses are culturally influenced. I was talking to someone earlier about Morgellons—a disease where people think there are little fibers growing inside their skin—which is an illness not many people have heard of in the UK. However, in the States it is more common, and is something we'd call a culturally influenced syndrome. Because it's better known there, I am surmising it's on television shows and in the media and things and people read about it and that leads to people thinking they might have it. Once upon a time Morgellons would have stayed in the States, but now, because of the internet, it will probably come over here.
You mention psychiatry and psychology a lot. Do you think coming at this topic from a neurologist's point of view is different?
Traditionally, psychiatrists are the people who are trained in managing mental problems, but the patients don't believe they have a psychiatric problem; they're having seizures or not being able to move their legs. That's where the problem with treating them arises. We need more cooperation and integration between psychology and neurology in the same way we need to stop thinking of the mind and brain as separate organs.
So we need a new specialism which overlaps the two?
Something like that is appearing. For example, my particular field within neurology is epilepsy. In my opinion, dissociative disorders should be a subset of neurology in the way epilepsy is, so that you have specialist doctors who are trained specifically in this and therefore develop the psychiatric expertise. That's happened in a couple of places in London, Sheffield, and Edinburgh, but it's bad news if you can literally name the people. They should be in every city. There should be so many people I couldn't name them all.
So how does this book fit into the history of psychosomatic illness? I mean, you refer to Freud, Charcot, Janet, even the Ancient Greeks...
Until we were able to look at anatomy under microscopes, which was only from the end of the 19th century, everything was a guess; people knew so little about anatomy and physiology they were merely guessing what happened inside the body, so they had no way of dividing things up into hysterical or otherwise.
Everything changed at the end of the 19th century when doctors began understanding pathology and looking at things that happened within nerves, rather than guessing. This was where we began separating diseases into organic and psychological. Unfortunately, this big change happened and then there were no changes in understanding and for the next hundred years we didn't make any progress in these disorders.
That's what I'm trying to change. But it's not just me, there are other doctors interested in this. What's greatly helped has been the advent of MRI scans, so that now we can look at people's brains when they're trying to move and think and feel. Only in the past ten years have we been looking properly at what's happening inside the brain.
I'm trying to help to de-stigmatize the condition, because part of the problem is, if you do not accept that this exists and do not accept it could be happening to you, you do not get to be part of a study—so we're have to de-stigmatize if we're going to move research into the mind-body connection forward.
It's All in Your Head: True Stories of Imaginary Illness is out now in the UK.
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