Sunday, May 12, 2013


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 Spain. 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 explanation.

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.


  1. Hi TWDCS,

    I just found your blog through a comment on my blog. I look forward to reading it more.

    Do you want to swap links to each others' blog rolls? If so, let me know in a comment back on my blog and I'll add you.

  2. Thank you for blogging! This is almost exactly my situation, and though I used to be sicker, I find it possibly harder psychologically to be in this half-well, half-sick state. It's permanent liminality, without being able to fully follow the rules of either side. I do try to talk with some people about it, but it's hard for anyone to relate.

    1. Also, please follow me on Facebook if you get a chance.
      I put all my new posts up there.

  3. Thanks for your comment, Unknown. I imagine it must be a common feeling, this difficulty of adapting to living in the world when you are only half healthy. I too find it a strain, exhausting in itself.

  4. Thank you for writing about this. The ME/CFS for me is much more restrictive than yours, and there is no way I can pretend or hide it. I use a power chair and a cane that folds out into a chair. Outings are limited - going to a pub would be like Zombie-lady climbing Mt. Everest. I'm curious, and also empathetic, about your need to keep the illness under wraps. I suppose it's a stylistic difference in that I actually do what i can to try to inform people a little bit about the illness. Yet, indeed, without actually suffering from this, a 'healthy' will never get it.
    I was fortunate enough to have been diagnosed by Dr. Bell before he retired. He did warn me, and empathize with the "fruitcake" diagnosis, and misconception. I try to educate people with very simple explanations: "cancer drug in clinical trial shows great benefit in many"; "recent UK study shows overlap with MS and ME/CFS immune expression"; "immediate lactic acid buildup". I don't spend a whole lot of time on people for the reasons you bring to light. Those closest to me realize that this "before and after" snapshot of my life is something close to tragic.
    (In posting this comment, I can see you'll have my photo. My cane-chair is hidden off to the side. In photos, I do try to look "normal".)

    1. Thanks for your comment, Nicolette.
      I think I addressed why I don't talk about ME much with people I know in the post. For one thing it doesn't really come up, as I can pass for a healthy person a lot of the time, in small doses. Also, it is just so exhausting, trying to explain a hidden illness that people have very little knowledge of, and I need my energy to try and have some kind of life. Also, there is a lot of room for misunderstanding if people knew that I had this condition, maybe they believe that it is contagious, or psychological, and I woudn't have the chance to set the record straight.
      It's easier just to say nothing, unless the situation arises where it is relevant. I actually have no problem talking to people about it, though I will never just bring it up out of the blue. I find people are often uncomfortable talking about illness.