Wednesday, May 15, 2013


I can't count what I have lost because of chronic fatigue syndrome.

In truth it is not something I really want to do, and yet seems necessary so as to be able to fill in the full story.

Anyone who has experience of chronic illness knows all about loss. The first thing to go, of course, is control. You lose control over where you go, what you do, who you speak to. You lose financial control, control over relationships, control over your future.

I have of course lost friends. As I was in my mid twenties and living in a foreign country when I fell ill, I had, at that time, some friends I hadn't known that long, but that I liked a lot. When I had my collapse it was impossible, in those days before widespread internet access, to keep those friendships going.

You need things in common with people who are to be your friends, and if you don't have much of  a shared past then you cannot maintain connections with people who are out in the world living their lives while you are struggling with showering yourself.

I have lost the chance at a real career. I am lucky enough to be able to work part time, but it is a tenuous professional existence that I have, a self-employed teacher reliant on a reduced number of private classes and tutoring to pay the rent. I am forced to work this way as a full time job is impossible in my situation. It is not very stable or secure.

Because of this I have lost the chance of ever really owning my own home, something nearly all of my close friends have done. I have no pension plan, few savings, a very reduced standard of living, no financial security. I am not quite poor, but am struggling.

And it is unlikely that I, in my current incarnation, could manage to maintain a relationship. After working my half a week I have little left to give. I have a need for regular solitude which doesn't really gel with having a life partner. I have little left that I can compromise on, and compromise is a basic element of any relationship, I believe.

And following from that, having children is unlikely. I can barely take care of myself, having a child is almost impossible to imagine for me. This is usually thought of as being more of a loss for a woman, and I'm sure it probably is. But for a forty-one year old man who has paternal instincts the loss of the possibility of having a child is something that does sting too.

And I lost my thirties. Or most of them. My late twenties were spent trying somehow to deal with this hole called CFS that I had fallen into. Most of my thirties were spent flailing around, limping along between relapses and slight improvements, until about five or so years ago I started taking certain supplements, began learning how to manage things a bit better and half-emerged from the darkness. But that decade is gone, and is not coming back.

To sum it up, CFS has prevented me from going through all the normal stages that people go through as they grow up and get older. I am forty-one years old, yet often don't feel like a real adult.

And this was going to be my complete blog post for today, a list of what I have lost. And then I got an email from fellow CFS blogger, I'mNoPosterGirl. Amid other kind thoughts she mentioned that I was "lucky (or some sick version of lucky) to be at 60-70% and able to travel".

And of course she is right. It is easy to dwell on losses, on what has disappeared, on what I have missed. But the truth is that, compared to many people who are housebound with CFS, or who are severely limited and unable to work, I am lucky. I do have at least half a life, which is more than others with this condition.

And so it is necessary to think about what I still have, or what I have gained in the last fifteen years too.

(A slight interjection here to say what I don't mean by "gain", and to mention my least favourite popular platitude - "Everything happens for a reason." - Eh, no it doesn't. There is no reason for the thousands of natural disasters every year, for drought and war and famine. They serve no useful purpose.

And there is no reason for someone having to live with chronic fatigue syndrome. It is not ennobling, it doesn't make you a better person, there is no grand plan behind my or anyone else's illness. So that's not what I am talking about when I talk about what I have gained. I have gained because I have been alive for the last fifteen years, and happened to have CFS.)

I still have a family, that I have leaned on when times were worse than this. I have my four or five best friends, who I haven't lost. I still have the ability to just about make a living, tenuous though it is. I can still travel, occasionally.

My brain function has been hit, especially my short-term memory, but generally it more or less works. I can still teach, write, blog, make up stories for my nieces, learn languages.

And what I have gained, I suppose, is a realisation that it is important to enjoy the good moments - whatever they may be - when they arise. When your life is limited and constrained and boxed in, then those brief shafts of light become all the more precious.

This sounds trite, I know, but it isn't any less true. Brief moments of pleasure, time spent with friends, being able to play with my two nieces, who I adore, travel, however limited, experiencing anything novel, good food, meeting someone new, discovering an interesting blog, a film or book that moves me.

Before I was sick (if I can remember that far back), I took a lot for granted. I was young, and thought that aging was for other people, that I had all the time in the universe. Now, I have the intense feeling of time passing, and now try to hold on to every good thing in my life, and savour it, and appreciate it and experience it as it happens.

I know what it's like to be much worse than I am now, and also that with a bit of bad luck and bad management, I could be back in the horrors again.

So there has been a lot of loss. It is important to acknowledge this, but not to focus on this, if possible. It isn't always easy, but it is necessary.


  1. It's difficult looking back at old photos of myslef pre m.e, I try not to think of it too much because it doesn't do me much good! It's a horrible reality that so much is lost when we are hit with this illness, there aren't very many things to gain.

  2. You're right of course, about there being nothing much to gain. I hope I made that clear, that I have gained nothing from ME and that any positive changes that have happened in the last decade and a half have come about because - even if you are ill - you still change and grow and develop as a person.
    Loss is a fact for everyone with CFS, and it is worth mentioning and talking about, but I have found that if I focus on it too much then life just becomes impossible.