The majority of people I know don't know that I have chronic fatigue syndrome.
In a way I am lucky that I can pass for a healthy person, I am not so affected that I am prevented from being out in the world, at least part-time.
And it is not as if I have been deliberately hiding anything. It's just that with people that I don't know really well, it just hasn't come up. I meet them socially, or in a work setting, and, because I have been managing this condition for so long, I have usually rested enough to be able to function more or less normally, at least for an hour or two.
Though it is true that I am not overly revealing about my state of health. It sometimes seems like too much work, telling people about ME. Explaining the ins and outs of the condition, how it effects me, the causes and treatments and all of the politics of it, is exhausting in itself.
And it is so easy to misunderstand, as there is so much misinformation out there about CFS. Someone may have half-heard about one misguided report, like the one inThe Sunday Times last week, and begin to believe that you are some kind of crackpot.
There is also the fact that if people don't know that I have this condition, then for the time that I am with them, I can pretend too. It gives me a space where I can be, at least temporarily, how I would be if I were well.
So I think that that is the key. It's almost as if if people don't know about my condition, then I can, for a short time, be as they see me, a reasonably active, healthy person.
Yet the truth is that I am in a way playing a role. There is this whole other truth about my life that casual friends and acquaintances don't know about. They don't see my periods of exhaustion, or don't realise that if I meet them in a pub then I have rested a lot of the day before to be able to make it there.
They don't see me struggling with food and intolerances, and they don't see all of the medications and supplements I take each day. They have no idea about the controlling force in my life, the obstacle around which I have to organize every other thing I want to do.
I am a half-ill, half-well person, and most of the people I know only see the healthy side. And that in itself is a difficulty, as it limits how close you can be to people if they only know half of you.
But I don't see a good way around this. If I do manage to summon the energy to go out at night, or to any kind of social event, the last thing that I want to be talking about is CFS. And so in my day to day life the opportunity simply does not arise to talk about what is in essence the most vital part of my story.
For example, someone I know recently suggested that I should do the Camino de Santiago, where people walk twenty kilometres a day on a journey through northern
I couldn't even begin to explain to her how utterly impossible even the idea of
this would be for me. I simply didn't have the energy even to begin the
So I go on like this, living an almost secret life. I imagine to a lot of the people I know I must appear quite opaque, someone who is all surface and no depth. I think many people wouldn't really be able to grasp the idea of me as dealing with illness when they see me as someone who teaches, who has a social life, who in fact organizes events in a voluntary organisation I am involved in.
I can do all this precisely because I have adapted to my lack of energy. But the truth behind it is hidden, and by necessity will remain so. CFS is just not something that I feel I can explain in just a few sentences to someone I don't know well. The impact is too enormous. So this is the way I am now, living my private, reduced life at home when I rest, and pretending to be someone that I am not when out in the world.
It at times appears surreal, and makes me feel a bit detached from those around me. But I can't see another way of approaching my everyday life.