In my second year at university, I came down with the Epstein-Barr virus, and I expected to fully recover. Sure, I knew it would take longer than recovery from a bog-standard cold, but no more than a few weeks.
At first, my optimism seemed warranted. It was the Easter holidays and my parents took good care of me. The fever only lasted a few days and I was out of bed within a week or two. I made it back to university for the summer term; the only difference was that my parents carried my belongings from the car to my room.
That was 1993. I was 21 years old.
It is now 2022. I am 50 years old. And I still haven’t fully recovered. I have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the diagnosis you get when you are constantly pursued by exhaustion and doctors have ruled everything else out.
In my early to mid-20s, I sort of recovered from the virus and carried on living as I had before: completing a degree, working, returning to postgraduate study, going out drinking with friends, going solo backpacking in Asia. Sounds pretty good on paper, but all those good things were accompanied by the threat or reality of physical collapse. The mix of good days and bad days was bewildering at first until I learned to spot the signs: overexertion, followed a day or two later by a tingle in the throat or my forearms, the overture to days of brain-fogged malaise.
Yet I have never been too sick to function. I have never been bed-bound or unable to take care of myself. And therein lay my problem: because I was never completely incapacitated, and because of the unpredictability of my condition, there was always hope of recovery.
That hope was stoked by my attempts to take control of my health. I got an “official” diagnosis from a “specialist” who could offer me absolutely nothing other than cognitive behavioural therapy (entirely ineffectual in my case). On the recommendation of a friend of a friend I started treatment with a doctor of Chinese medicine. I drank foul-tasting herbal concoctions. I adopted a restricted diet (no gluten or dairy, natch). I stopped smoking and drinking.
It kind of worked. I was more stable, more in control. But while I had fewer troughs, I also had fewer peaks. My life lacked joy and I became resentful of the vices that my twentysomething peers could indulge in. The hope of a recovery in the future condemned me to an austere existence in the present; pleasure endlessly deferred.
There was no one moment when I decided to give up hope. A lengthy relapse in my early 30s during a time of severe personal and work stress after a long period of reasonable health was part of it. I realised that the only way to avoid such relapses in the future would be to live a life without personal or work commitments; but that simply wasn’t an option for me. A loss of faith in Chinese medicine was certainly a contributor to abandoning hope. While at first it had given me a sense that I was doing something to “fight” my condition, the improvements it brought were marginal beyond that and the medicines were disgusting. Getting married was also a factor; I no longer felt the desperate need to keep up with the socialising of my friends in the hope of finding a girlfriend.
Above all, my condition became familiar to me and, to some extent at least, predictable. I began to forget what it felt like to be “normal”. My condition became an unpleasant but just about tolerable part of life itself.
Whatever it was that did it, in my 30s and 40s I gave up hope of a cure, embraced my identity as a person with a disability – and learned how to be happy. I am not on a treadmill of trying new treatments. Maybe one day there will be a cure, or maybe not.
Giving up hope has given me back the capacity for joy. I take care to pace myself, but I reserve the right not to. For a few years, I even took up smoking, although I have since quit. As nihilistic as it sounds, I needed to embrace the destruction for a while. I swam throughout one winter in Highgate ponds, enjoying the euphoric glow followed by the inevitable crash.
Yet here’s the kicker: hopelessness is a privilege. If my condition was just a bit more severe, my life would be miserable. If I wasn’t married and didn’t have a supportive family, I would be in penury. If I hadn’t chosen a career path that has some flexibility, I would be in a very difficult position.
Giving up hope requires a safety net. The challenge for our society is to enable others with chronic conditions and disabilities to give up hope without giving up everything else.
Keith Kahn-Harris is a sociologist and author
