I’ve just finished a book called “It’s all in your head: Stories from the frontline of psychosomatic illness”, by Suzanne O’Sullivan. I picked it up because it is relevant to my PhD, but it turned out to be a very interesting read and one that’s made me think a lot about my own health. It’s quite controversial, there are bits I don’t agree with, and some places where I think the author shows a naivety that is not uncommon among western doctors. However, it really was fascinating and made for easy reading.
I want to briefly digress with a game. I was first shown this during my psychology degree, and it blew my mind! It only lasts just over a minute, but you can read on if you’re not interested. I just wanted to include it for a fun illustration of the power of the mind.
Anyway, back to the book. Suzanne O’Sullivan is a neurologist specialising in psychosomatic illness. A psychosomatic illness is “a disorder characterized by physical symptoms of psychic origin”. I.e. physical symptoms that are considered to be caused by the mind. This dichotomy between mind and body really bothers me. Surely all illnesses involve both the mind and the body, to some extent? Depression is a mental illness but fatigue and appetite change are part of the diagnostic criteria. A heart attack is a physical event, but a period of intense stress or anger can bring one on . Our mind and body are so intertwined that this continuing attempt to disconnect them just seems ridiculous.
The book contains a series of case studies of patients Suzanne O’Sullivan has seen, with a range of debilitating physical symptoms that have been diagnosed as psychosomatic. The wide range of symptoms are quite incredible: seizures, gastritis, migraines, tinnitus, loss of eyesight, paralysis. Patients have given up work, are bed-bound, have spent years undergoing hospital investigations, surgery, taking harsh medications. One thing the author does well is describe just how difficult life has and continues to be for these patients. Their symptoms are not ‘pretend’, they have genuinely disabling symptoms that affect their lives enormously. The core theme running throughout is that, regardless of the individual pattern of symptoms, these patients are at their wits end, desperate to have a diagnosis and a way forward.
This part of the book I can really relate to. My health problems continued for years before I got some answers, and having medically unexplained physical symptoms is difficult for so many reasons. Not having a diagnosis or label makes it hard to explain to other people. It means that you cannot research your own illness, and therefore you feel completely uninformed about what is going on in your body. No diagnosis means, almost inevitably, no cure. It is upsetting, stressful, embarrassing and frightening to have disabling symptoms for which your doctor can find no explanation.
The point in the book is that the search for a physical cause can in itself prolong suffering. Suzanne O’Sullivan says that, once people accept that their symptoms are psychosomatic, they can work with a psychiatrist to understanding the underlying cause, and therefore work towards getting better. Which, surely, is what all of them want? It’s an interesting point, and indeed in the book she describes patients who do get better, and whose quality of life improves hugely through working with a psychiatrist. She makes a case that this is nothing to be ashamed of. The sooner we as a society stop giving less weight to mental health than physical health, the sooner we can all accept the influence of our mind on our body, and we can all work towards living a healthier life.
If someone told me that my symptoms were psychosomatic, that there was no physical cause for them and that I should see a psychiatrist, would I do it? Actually, I think I would. In fact the book has got me questioning whether there could be more of a psychological influence to my illness than I realise, and whether it’s something I should consider. However, I do still have a problem with this way of thinking. Because, at what point should you stop looking for a physical cause? I did get a diagnosis, and a physical cause was found, I have chronic reactivating Epstein Barr which is shown through the particular types of antibodies present in my blood. Actually this is one of the parts of the book that irritates me. The author makes a (very brief) reference to EBV when she discusses chronic fatigue syndrome, stating that since most of the adult population has had it at some point in their life, most people will have EBV antibodies in their blood and therefore EBV antibodies do not mean anything for CFS. This explanation is scientifically incorrect. There are multiple types of EBV antibodies, and the pattern of antibodies demonstrates whether the person has chronic EBV. The bloodwork of someone who has continuous symptoms caused by EBV will be different to the bloodwork of someone who contracted it many years ago and made a full recovery. This is well documented in scientific research and I could pull out many, many papers to this effect. She also makes a comment later in the book that is quite derogatory to people who believe they have food intolerances, and makes a statement that again suggests she does not understand the latest science.
Now, she is a neurologist specialising in psychosomatic illness. She’s not an EBV expert or a food intolerance expert. No-one can know everything, not even doctors. However, it is exactly this attitude that frustrates me about western medicine. There is a belief that the doctor knows best, that their medical training is more important than the patient’s own experience of their body. Despite all of the knowledge gained by science, there is still so much that science doesn’t know. That is exactly what keeps scientists in the job (and exactly why I love working in it) – there is always more to learn. Just because something isn’t recognised by medicine currently, that doesn’t mean it won’t be recognised in 5 years time, and it is arrogant for any doctor to think that what they know now is everything there is to know.
And this is where I struggle with psychosomatic illness. On the one hand, if psychological treatment can help improve a patient’s quality of life then that is great. Clearly physical symptoms CAN originate in the mind. But does this mean that just because a physical cause for someone’s symptoms has not yet been recognised, that they MUST originate in the mind? In any case, the general take-home message of the book is one I definitely agree with. The mind and body are not distinct. We all need to accept that the mind can make us sick. We so easily accept that emotions can affect our body; no-one questions that when we’re happy we might laugh, and when we laugh we make a noise, our breathing changes, our body shakes, the muscles in our face contract…and that these changes happen largely out of our control. So why is it so hard to believe that psychological factors might make us sick?
I have been thinking a lot about this over the last few weeks, about how my own illness may be influenced by my mind. I think it is easy to get defensive about this. For whatever reason, we don’t want to accept that our mind may be influencing our bodies. By accepting that, you are somehow implying that you can control it, that you should be able to ‘snap out of it’ or that you are choosing to be sick. However, if I want to stay true to my own beliefs, to the things I have written about in this post, then I must be open-minded to the idea that those beliefs are relevant to my own situation. Blog post on that coming up.