Is chronic fatigue syndrome a ‘real’ illness or is it the most recent incarnation of hysteria? Ever since chronic fatigue appeared on the scene, it has persistently been labelled a psychosomatic disease. This means that the medical establishment is not searching as actively as it might for a cure, and in any country where medical care is insurance based, there is very little attention or treatment available for what is a highly debilitating condition.
I fell ill in 1997 but wasn’t diagnosed until 2006. In part this was because I had a nasty suspicion it would be chronic fatigue but I’d heard too many cruel comments about other sufferers (particularly in a university setting) to be in any way comfortable with such a diagnosis myself. I can’t tell you how much I did not want to be lumped into that particular group, because it doesn’t matter what you’ve done before, or what kind of a person you are: it’s scary how willing people are to believe that you are ‘avoiding’ unpleasant situations, failing to show the proper moral backbone or downright malingering. By the time I was finally diagnosed, I’d been such a workaholic that the university was quite sympathetic. My family was a harder sell. When my husband rang up his mother to say I’d be taking time off work, she said ‘But isn’t this all in her mind?’ I had spent the past ten years trying to do work I loved and battle an illness that attacked every part of my body. You may imagine how I felt about the suggestion that I was simply neurotic.
But when it came to finding some treatment for myself, psychotherapy was one of the few possibilities. Oh I tried lots of alternative therapies, none of which got me anywhere, although they contained some of the secondary problems I was experiencing. But I knew stress and anxiety had had big roles to play in my falling ill and psychotherapy gave me the best chance of at least managing what I had and coming to terms with it. Without a place to make sense of what was happening to me, and a very sympathetic listener, I don’t know how I would have coped. If chronic fatigue has anything to do with depression, it’s because the illness is so overwhelming and so devastating that it knocks you for six. It has a tendency to attack driven, hardworking people who invest a lot emotionally in what they do, and who are very cut up when they can’t keep doing it. And as I remember all too well, to feel as ill as I did, with no prospect of anything at all that could be done about it, and this stretching out for months, years, into the future, is a pretty depressing prospect.
I’ve been reading Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson, an American journalist who has researched the rise and spread of the illness in America in painstaking detail, and the medical establishment’s failure to take it seriously. Johnson identifies an outbreak that seems to have begun in 1985 in Nevada and then cropped up in Boston, California and New York. The majority of the early cases were middle-class, middle-aged women, and given that they displayed a perplexing array of symptoms and no obvious, simple bacteria offered an identifiable cause, the official decision was that it was all in their minds.
I’ll add another significant factor into this: chronic fatigue doesn’t kill enough people. You have to die to be taken seriously in medicine, and whilst CFS can reduce people to bed-ridden vegetables or just destroy their quality of life forever more, it isn’t enough compared to, for instance, the other illness that was hitting the headlines about the same time: AIDS. Johnson also reports how the government felt there was surprisingly little lobbying by the sufferers of the illness, which is the way that ‘new’ diseases call political attention to themselves, and eventually, research money. No one seemed able to put two and two together that CFS-ers were just too sick and too tired to organise a lobby. Plus, the celebrity cases were not keen to identify themselves with the illness. Johnson reckons that the register of sufferers included James Garner, Robert Wagner, Morgan Fairchild, Cher, David Puttnam, Kirstie Alley and Cathy Lee Crosby, but few spoke out publicly. Cher was reported as falling ill for more than three years after a flu-like virus and another patient declared “I’d like to be in the room when you tell Cher… that her illness is due to ‘unachievable ambitions and poor coping skills.’”
Like just about everything else, medicine responds to public outcry, and if there is insufficient public sympathy, then nothing happens. It also responds, probably most rapidly of all, to the pharmaceutical industry. If scientists develop a drug that works, then the illness can be verified. But to do that, doctors need a simple yes or no diagnostic test, and that has never been forthcoming – it’s a vicious circle. Many people are unconcerned because they think it’s not contagious, although this book argues otherwise, with evidence of many health care professionals falling ill after handling blood samples. And then medicine has a very poor record of giving credibility to illnesses that involve fatigue (a word I dislike as it is so feeble compared to what it wants to describe). Multiple sclerosis was for a long time considered a psychosomatic illness, as was lupus and the Epstein-Barr virus. Doctors are also prejudiced against nebulous, debilitating illnesses in white women with private means (actually, they’re not alone), without being able to see that only women with enough money and sense of entitlement ever make it through the professional contempt and lack of interest to reach a diagnosis in the first place.
So where are we now? This book was published in 1996, and not a great deal has changed, except perhaps public opinion is kinder to chronic fatigue sufferers, and more willing to concede that an illness is involved. There has been significant research into possible viral or retroviral roots to the illness without any conclusive breakthrough, and tens of millions of people are said to suffer with some version of it, men, women, children, regardless of social situation. A significant proportion of them make up the long-term unemployed and the chronically poor. Less than a fifth of cases ever recover, and ‘these patients inevitably describe a series of readjustments or realignments of goals and expectations that would have been unthinkable prior to the onset of their illness.’
I include myself in that category – I’m much better, and I do much, much less, after a long fight against my inclinations. My own experience suggests that it is a disease based in the endochrinal system – adrenal exhaustion triggers a severe immune system response (when you feel ill, that’s your immune system working to evacuate the perceived threat) and because the illness is so intense, the entire hormonal system is thrown out of balance. There is also a psychological component, bound up in the trauma for some of us of suffering the illness, and built into the body’s defense systems which seem then to be on a hair-trigger (as is often the case with other autoimmune illnesses like asthma and hayfever). But given that I’m a smart enough person and ten years in therapy didn’t cure me, I don’t think it’s entirely psychological. There is some biological component involved that has yet to be found. I think I’m one of the lucky ones – for the rest I fervently hope that some solution will be uncovered.