There is no doubt in my mind that some people can't help but feel that having a chronic condition such as M.E. might be a bit of a breeze. When someone asks me what I’ve been doing and I say not a lot because I have had a to spend most the time lying or sitting down there is something wistful about the responses I have occasionally had: people tired and desperate for a break in their relentlessly busy lives, can’t help but feel (and say), I wish I could just do nothing. The picture they have is that one is lying on the chaise-longue, fresh out of a long soak in a scented bath, reading a good book or watching a film, while someone brings refreshing drinks and nourishing food. Of course, all or some of these details may apply, but they don’t add up to the truth of the situation. Obviously. If we are lying down all the time we are most likely far too ill to be able read and when we are up and doing, or even lying/sitting and doing, we are probably coping with varying degrees of pain and fatigue and risking more of the same or worse on the following day. The years pass and we long for life. If we seem content with our lot it is a hard-won serenity that has had to be practised over years of illness where so many hopes have risen like new moons, only to fade again. I believe that most of us do not look for sympathy. Empathy is good, but most people can’t possibly know what this is like, it takes a particular talent to feel oneself into another’s situation, one can’t bang on about it the whole time and when an illness just goes on and on it scares people. So now the deal is this: I let it be known that I have a condition called M.E. which impinges significantly on what I am able to do, and then I want acceptance, pure and simple. If anyone wants to disrespect me (which doesn't happen much these days) they can piss off. I am prepared to deal with a certain amount of ignorance and to give information. Basta.
I have said all this before, one way or another. But now, with my new decision to take an extended “gap” period, (where I’ll be working but not “going out to” work) I know I’ll meet a number of responses that have, perhaps, less to do with my situation than with the stressful lives that so many people choose, or are obliged to lead. When I told my sister last year that I wouldn’t be working for a while, there was a silence and then she said, “I have to work.” A divorced friend of mine, run off her feet with work, children and health problems must see this life of mine as an oasis. I don’t get into arguments about it, I can imagine how it feels and have, in my way, been there too in the early days of my illness when there was little money and if I had been on my own instead of living with a supportive partner, my children may well have had to be taken into care. There were hard times, and I never had a penny of incapacity benefit as I wasn’t working at the time the illness struck. Things are easier now. I liked going out to do the work I did, but it took all my strength and what happens in the future is open. So, for now, I am having another gap year and taking the road of “never apologise, never explain” – the contradictions notwithstanding.