Undiagnosis – An Author’s Perspective on Chronic Fatigue Syndrome and Other Chronic Illnesses

A Q&A with novelist and patient advocate Marcus Sedgwick.

For the past six years, award-winning author and United Kingdom native Marcus Sedgwick has struggled to live with chronic fatigue syndrome (CFS). In his latest book, Snowflake, AZ, he tells the tales of those living with a similarly invisible, often undiagnosable condition: multiple chemical sensitivity (MCS). Practical Pain Management (PPM) spoke to Marcus about this work, his philosophy on diagnoses, and why he has chosen chronic illness as a muse for his modern writings.

PPM: You noted in one of your recent newsletter interviews that you were in denial about having CFS at first. Why was that and what did it take for you to accept the diagnosis?

Sedgwick: You’re right, I did say that, but I’m not sure if ‘denial’ is exactly what I meant. I was perhaps only nine months into being ill; I was still in shock, I think. Like most people, I had no idea that one day illness would arrive in my life as an apparently permanent feature; that I would become a stranger to myself, suddenly unable to do the things I had taken for granted until such a short time before. Things like running, which I loved; even simple things, like standing for more than a few minutes, things we never think about until it’s forced upon us. In the first couple of years of being ill, I was quite simply bewildered. So maybe denial was part of it, but confusion was the uppermost feeling.

"As for accepting the diagnosis, well, to be honest, I haven’t, for the simple reason that I came to the conclusion that CFS is simply not a diagnosis. It’s a label applied in the absence of a diagnosis," says author Marcus Sedgwick (Image: Maureen Hansman)

As for accepting the diagnosis, well, to be honest, I haven’t, for the simple reason that I came to the conclusion that CFS is simply not a diagnosis. It’s a label applied in the absence of a diagnosis. Unlike many other illnesses, in which you can say, ‘I have MS’ or ‘I have cancer’ or even just ‘I have the flu,’ the label ‘chronic fatigue syndrome’ is just a fancy description of what you told the doctor is wrong with you in the first place; you’re exhausted all the time and have a bunch of weird other symptoms.

PPM: How was being given a diagnosis of CFS surprised you? How does it impact your day to day?

Sedgwick: An illness like mine, CFS, and other [invisible illnesses are often] the subject of massive controversies. Very few people believe [it] is a ‘real thing’, but I find this view enormously arrogant.

The history of medicine is simultaneously the story of diseases from denial and misunderstanding toward final enlightenment and cure. Things are a little better with CFS, though there remain senior medical professionals in the UK, for example, who believe it is the imaginary resort of ‘malingerers’ (they use this specific word). In the states, the NIH has finally reached the conclusion that CFS is a physiological illness and not something ‘all in your head,’ as the first doctor I spoke to told me it was.

What this means however, is that there is a war brewing across the Atlantic, and what is at stake is not just the ‘official’ position on CFS. That’s because CFS is the ‘poster child’ illness upon which the field of psychosomatic medicine has pinned its colors; if the UK health authority, NICE, finally has to admit, as the US has done, that it’s not a mental health issue, the rug comes out from under their feet.

As for me, my day-to-day life has inevitably changed. I used to work all the hours I wanted, and play as hard as I wanted to. I am better than when I first became ill, I’m pleased to say, so now I can work for an hour or so each morning at my desk, and on very good days can even walk short distances. I am one of the lucky ones with CFS – my days confined to bed are the minority, not the majority of my life.

PPM: How do you relate managing your health with your writing? For instance, do you consider writing to be a distraction or to serve as a therapeutic to your chronic condition?

Sedgwick: When I first became ill, aside from not being able to stand, or walk, for more than a few minutes, the most terrifying thing was that my brain was a mess. CFS patients typically call it ‘brain fog,’ and it means not being able to think straight, losing words you want to use, forgetting what you started saying halfway through a sentence and so on. When you make your living from putting words together, as I do, you can imagine that I was worried, to say the least. After a couple of years however, I wrote a new book, which was an enormous relief. I have learned to try to work with the lacunae in my mind, and in my vocabulary, now. If I can’t think of the right word, and another seemingly inappropriate one comes instead, I try to look at it and see if I can use it to make the sentence I’m working on more interesting, more unpredictable.

"I hope anyone with a misunderstood, chronic illness might find some solace in it too," says the author of his 2019 book.

Again, I’m lucky in that my job is still something I can do, even if much more slowly than before. I’ve heard of sportsmen and women getting CFS, and that’s a whole other level of tragedy. And it is a huge consolation; the release of immersing yourself in the fiction you’re making is therapeutic, calming, distracting, uplifting and it’s what I still live for. Stories are how we attempt to make sense of something that really doesn’t have much sense in it: the world we find ourselves living in.

PPM: Tell us a bit about your new book, Snowflake, AZ. How do you envision it helping others living with chronic conditions?

Sedgwick: The book is the unintended result of the trip I took to the desert of Navajo County, Arizona, where, outside the town of Snowflake is an unofficial community of sufferers of multiple chemical sensitivity (MCS). I went there to see if what was happening to me looked anything like what had happened to them. Even though I came away not knowing, I was so moved by their stories that this new book was the result. I have already had some very touching letters from those with MCS saying that it’s moved them in return, so I hope anyone with a misunderstood, chronic illness might find some solace in it too.

PPM: In addition to your books, you are known for your “Undiagnosis” newsletter—which, like Snowflake, AZ, centers around the struggles of seeing doctor after doctor, year over year, just to get a name for the pain and symptoms one is facing, something our readers understand all too well. How did you come up with this name Undiagnosis and why do you find it satisfying?

Sedgwick: As I touched on above, I don’t accept that ‘chronic fatigue syndrome’ is a diagnosis. It’s an absence of one. It’s a description of symptoms, and is both accurate, and useless. In that vein I decided that we ought to be more candid, so I invented the term ‘undiagnosis’ for the state of being ill without actually knowing why. It is also accurate and useless, but it is at least more honest, and critically, it doesn’t signal to people who don’t know about CFS that this illness is understood, which I think it’s a mistake to do until we actually do know what it is. Progress is being made on this all the time, for example at the CFS research unit at Stanford University, so I hope soon we may be able to settle on a name, and perhaps one day a cure, for this prevalent, yet massively under-discussed, illness.

PPM: Having written extensively about health, what two or three takeaways would you offer to our readers who may be struggling to move forward?

Sedgwick: Well, these things are different for everyone; but I can say the things that helped me finally find a way to not struggle so much with the despair of living with chronic, misunderstood sickness. The first is simple cliché; give it time. You may get a little better, as I did, or you may not, but time is what’s required to come to terms with the fact that your life is going to be something different from what you hoped or expected. Only when you do can you start to find the things that still make life worthwhile, no matter how small they are.

The second thing is not to try to search for meaning in your illness, that is, thoughts that run ‘I’m ill because X, Y or Z...’ That road can drive you crazy. Try to be kind to yourself; it’s not your fault that you’re ill.

And related to that search for meaning, I can say that the single most useful thing I came across in helping me come to terms with being ill long term was a sentence in a book I read during my first year. It’s a book that sadly, few people read these days; Thomas Mann’s The Magic Mountain - a vast and wonderful novel about many other things besides illness, but which saved my sanity when I read it. At one point, someone asks the protagonist of the novel, a young man in a tuberculosis sanatorium, how he is getting used to life ‘up here’, which means not only the world of the sanatorium, or the town of Davos, Switzerland where it’s set, but the new world of ‘illness’ into which he has arrived. His general answer –  I’m not getting used to it. But I’m getting used to not getting used to it – is a mantra that I now live by.

Updated on: 10/28/20
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The Mysteries of Multiple Chemical Sensitivity and Fibromyalgia Syndrome