From The Guardian, May 6
After a bout of glandular fever at university, Keith Kahn-Harris developed chronic fatigue syndrome, from which he still suffers. He explains how this debilitating and misunderstood illness has changed his life for ever.
For the past 15 years, I have suffered from myalgic encephalomyelitis, also known as ME or chronic fatigue syndrome (CFS). I contracted ME following a bout of glandular fever at university and have never fully recovered. While I am "lucky" enough to have relatively mild ME – I work part-time in the sociology department of Goldsmiths, University of London, I have a wife and two children, I have travelled and experienced many of the things that people of my age have – I always have to be careful not to over-exert myself, to balance my need for exercise and stimulation with my need never to exceed my boundaries. As these boundaries are always shifting – what I can manage one day, I may not be able to manage the next – determining my limits is excruciatingly difficult. At a minimum, I must sleep late most mornings and nap every afternoon.
Despite keeping a tight control on my physical limitations, I am periodically struck down and have to retreat to bed for days at a time. I have tried various treatments, but only traditional Chinese medicine and sleep medication have really helped. Barring a miracle, I do not expect a full recovery and I class myself as having an invisible disability.
I have had ample time to reflect, over the past 15 years, on what it means to be well. In the early years I was desperate to return to my truncated early 20s life, to be out all hours, to throw myself into work, play and relationships. I often pushed myself beyond what I could cope with, leading to relapses.
With my failed attempts to live a normal life, I was in many ways fulfilling social expectations of what it means to be a good patient. Think of Jane Tomlinson, who, despite terminal cancer, spent the years before her death last year engaged in heroic athletic challenges. Tomlinson was and is widely admired for never giving in and for pushing herself, and in 2007 she received a CBE for her efforts. She is an example of what our society expects: that illness should be fought. Yet while this model is appropriate for some people, it cannot work for everyone or for every type of illness. With ME you cannot run a marathon.
But many people assume ME is an illness to be combated like any other. Long tagged with the disparaging "yuppie flu" label, there is enormous ignorance of what it is and what patients go through. Although an estimated 240,000 people in the UK suffer from ME, its effects are chronic and invisible. Symptoms include extreme fatigue, muscle pain, sleep difficulties and memory problems. About 25% of sufferers are housebound or bed-bound. ME is often accompanied by isolation and prejudice. The prognosis for ME sufferers is varied; some recover fully, but many do not. Even in its milder forms, ME can devastate lives and destroy careers.
For many years, psychiatrists dominated the research and treatment of ME. The treatment of first choice remains various forms of cognitive behavioural therapy (CBT) which, applied crudely, can end up suggesting to patients that their illness is "all in the mind". The ME community is full of stories of patients being forced into exercise programmes that make their health worse, of benefits and insurance claimants accused of lying, of parents of children with ME accused of Munchausen Syndrome by Proxy. Sophie Mirza, who became the first person to be classified as having died of ME in the UK in 2005, was even forcibly sectioned.
Thanks to years of campaigning by ME patient groups and charities, the situation is improving – very slowly. Psychiatric explanations of ME are increasingly disputed and ME is now listed by the World Health Organization as a neurological condition. No one is certain what causes ME or how it should be treated. A mark of the long way that ME studies have to go can be seen in the work of the National ME Observatory, a lottery-funded project of which I am on the steering committee, which has to conduct the kinds of basic social research, such as piloting an ME disease register, that researchers on other illnesses take for granted.
Crude applications of the psychiatric model of ME may have caused a lot of damage, but they are in line with common perceptions of ill-health. ME is still often treated as a battle to be won. To be cautious, to listen to the needs of one's own body, is to "give in".
Increasingly, I've been thinking: what would it be like if I recovered tomorrow? Having faced years of teasing (some good-natured, some less so) for my supposed laziness, I would doubtlessly seize the opportunity to dive into a full-time job. With it would come status, security and a better salary, but also long hours, long commutes and pressure. Today I can work on my own terms, at my own pace, and I can be home when my son returns from school. Don't misunderstand me. Although I have a far better life – thanks to a supportive family – than many people with ME, I do want to get better. The problem is that the society that "healthy" people live in is just not that healthy. I am caught between the desire to be a "normal" member of society and a recognition that normality has its downsides.
ME challenges our ideas about how to be a healthy person. The message I get from the media, friends and colleagues is that one should treat illness as alien, as an invader to be evicted as soon as possible. But to have any kind of quality of life with ME, you have to accept the unwell part of yourself. This consideration of one's own needs might seem like selfishness, but in reality it is necessary to develop a proper balance between self and other and to prioritise what is really important in life. Like everyone else I know who has ME, I am prepared to push myself when family demands it; I have taken my kids to A&E in the middle of the night as many other fathers have. And although I yearn to work harder, I know that career is not as important as family.
ME has forced me to embrace a healthy lifestyle: yet this should be possible for everyone, not just those with a chronic illness. But how many "healthy" people feel obliged to come into work when sick? How many "productive" people feel exhausted much of the time and are dissatisfied with the maelstrom of modern life? Is "pushing yourself" whether you are sick or well always laudable? It is unsurprising that there is disenchantment among many well people at the pressures of daily life.
Next week it is ME Awareness Week, during which charities will appeal for more public understanding of the condition and more support for its patients. My hope is that an increase in public awareness of ME will not simply lead to more and better treatment of the condition – although that is clearly crucial – but to a wider appreciation of the lessons it offers to everyone.