If you’re wondering why there haven’t been many novels recently, Marcus has been working on a book based on his own experience of falling ill, over seven years ago, with ME, also sometimes termed Chronic Fatigue Syndrome*. It explores what happens when your doctor tells you your illness is psychosomatic, despite all the evidence to the contrary, and what these four words – all in your head – do to you.
Imagine this: You’re sicker than you have ever been in your life. You try to wait it out, but it’s not improving. You try to work, but it’s obvious you can’t: you have aching joints; painful, stiff muscles; you can barely walk. You are exhausted in a way that you have ever known. So you go to your doctor. After some routine blood tests you return to get the results. They are all negative.
The doctor leans slightly across the desk towards you and says the words that will change your life. ‘What would you say,’ she says, ‘if I told you that this is all in your head?’
All In Your Head is about what happens when your doctor doesn’t believe you’re ill. Not physically. That somehow you are imagining a serious illness, or worse, faking it.
It’s about the stigma that can go with invisible illness; the damage done by being doubted on top of being sick; the confusion and loneliness of such conditions; despite the fact that there is an unexplored epidemic of chronic, undiagnosed illnesses at large.
And that was before Covid-19, which according to many experts will undoubtedly trigger chronic illness in many, many more people. Something easily predicted in March 2020, long before anyone was using the term ‘Long Covid’.
For here is what the pandemic has already started to do: it has turned a (relative) minority health issue into a global concern. Not the matter of the acute illness, as frightening as that might be, but the longform sickness that can follow – for many people who contract the Coronavirus, for those who do not make a total recovery, the world will never be the same again. What was a story that affected perhaps less than 1% of the world population is in the process of becoming a story that everyone will be familiar with. It will happen to someone you know; it will happen to someone you work with, someone in your family, someone you love. It might even happen to you.
All In Your Head is about the weird places chronic, disrupted ill-health takes you – literally and metaphorically – the bizarre treatments and even more bizarre practitioners; the edges of medicine; the strange thoughts and disturbing feelings. It’s about the long search for answers, and it’s about the brewing crisis in medicine, between doctor and patient.
It ponders famous sick writers, draws comparisons to misunderstood diseases of the past, such as tuberculosis, and probes common myths surrounding creativity and mental health. It looks at the gender bias inherent in the field of psychosomatic medicine, and the very shaky ground on which that branch of medicine is based. It looks at the financial pressure that underlies the reason why so many doctors are keen to tell you your illness is ‘all in the mind’. It questions the nature of which stories of illness we are prepared to hear as a society, and which ones we aren’t.
All In Your Head isn’t a story, not exactly. Through writing this book and in being ill, I was brought face to face with the role that stories play in our lives; the way we each tell ‘our story’, and what happens when that story breaks down. Something that has now also been replicated on a worldwide scale.
This book is about the stories we tell, which ones we want to hear, and which we don’t. It’s about the damage done to you when your doctor does not believe you. This, too, might happen to you.
ALL IN YOUR HEAD – THE PODCAST
In addition to the book, there will be a podcast mini-series exploring some of the themes of the book first hand, with expert witness of all kinds, from sufferers to doctors to philosophers.
1 Undiagnosis – what happens when you don’t get a diagnosis for your illness; the limits of orthodox medicine; the effect on you, your family. The tricky path of self-diagnosis.
2 The Nervy Ones? Is it really true that creative people are more prone to mental and/or physical illness? Do more women than men suffer from CFS: are we still gendering illness; believing women to be more prone to psychosomatic issues? How else do we stereotype illness?
3 Until it Happens to You – The prejudice experienced by the undiagnosed; the trying nature of invisible illness. Doctors who themselves became chronically ill and undiagnosed.
4 Crossing Borders – what being ill in different places shows us. What being ill in different times should have told us.
5 Oh, Oh, The Places You’ll Go (when you have an undiagnosed illness) – Some of the more far out treatments/places you arrive at when you’re desperate for answers. Strange therapies and stranger therapists.
6 How Not To Be A Hypochondriac When You’re Actually Ill – You’re ill. It’s real, and it’s not going away. So how do you live with the fear that chronic illness can bring? And how do your family and friends live with it too?
7 At War with the Mystics – It seems there is an epidemic of undiagnosed illness, but there’s a related crisis – given their experiences, many people have lost faith in their doctors, turning to other, perhaps unverified sources of aid. Is this dangerous, or is this a chance to change our relationship with medicine for the better?
All enquiries: Phil Perry/Abi Sparrow @ SP Agency
© Marcus Sedgwick/All In Your Head 2021
* The debates about the names of ME/CFS are something I cover in an appendix to the book. This is a deeply complex issue with convoluted and sometimes scandalous stories behind even the name of the disease. Forgive me if I am not using your name of choice here. It’s why I prefer to say I have ‘Undiagnosis’…