Chronic Fatigue Survivor Guide

I can remember years ago, in my first year of uni (studying nursing) learning about the sick role. We had a lecture on it, then the following week they brought a woman in to talk about her experience of Epstein Barr, as a demonstration of someone not fitting in to the sick role.

At the time I felt really sorry for her, I remember thinking how awful it must have been for her. Looking back I consider her lucky, she was sick for a relatively short period of time in comparison to other people with chronic illness. I know people going on 10 years with CFS, in comparison this lady’s experience was much like getting a common cold.

It remains possible to be positive, to think of your future, when you are sick for a limited period of time. When it gets past a few years and the sickness remains, it is hard to remain positive, and even harder to consider a future without illness.

So how do we cope with being sick and not in the sick role? On the most part I would say not all that well.

What is the sick role? Basically its the role we are meant to fill when we are sick, we are expected to rest, sleep alot, watch movies, and make genuine attempts to recover. In return society supports us, allows us time off work, our families might prepare food for us, and help us with our needs. But what happens when its years…

Work might be supportive for a while, but eventually it might all get a bit much and they no longer support you needing time off. For me this did take a while to happen, eventually I became too unreliable, if I didn’t quit it was hinted that I would be fired.

Family may continue to be supportive, or they may stop supporting you at all. They might even stop believing you. My family has been very supportive, but I no longer am able to be in the sick role, I get help, but its help getting to appointments, not help cleaning the bathroom, or cooking dinner.

Society no longer supports us, its been too long. Can we prove whats wrong with us? If we can we might get government assistance, if not we might be left having to try and earn an income when we are not physcially fit to do so. I gave up on this assistance, originally I had no official diagnosis so could not get assistance, now I am just not eligible…but I remain poor.

Then the most important person’s expectations change, your own. Even if we were completely supported in this role, would we want to stay in it? How many books, movies, and bad day time television can we endure before insanity sets in? Eventually we have to learn to carry on with life, adapt somehow, learn to live with the illness.

After having such a good run for so long it’s incredibly depressing to have a bad one again.

I keep waking up hoping that today is the day I pick up again but it hasn’t yet happened. It feels like a tease to feel well and then have it snatched away. I am sitting at my laptop all snug with my little table next to me with empty plates and cups, many people would think that sounds like a nice way to spend a day, and once it was. These days this is as far from what I want to be doing as possible, I have long ago exhausted my DVD and book collection, the web has well and truly lost its novelty downtime value, and I am left with that ‘downtime’ being my new job.

I have had it said to me that I will miss this once I can’t do it any longer, but will I? Is it like smoking 10 packs of cigarettes in a day to kick the habit? Has downtime become something I resent? Perhaps in years to come I will look back at this time and think how nice it really was, but I doubt it. When you have a cold and are forced to ‘rest’ and sit around watching bad TV and DVD’s all day, part of you enjoys it, because it’s something you can never do, but when it is all you can do, it’s just like working. Mundane and monotonous.