I don’t know about you but since I became ill and subsequently assessed as having a disability, I have felt this strange sense of social expectancy being placed upon me. I feel that I must conform or oddly even to perform. I think in some ways it comes from being bombarded with images and stories of people who have “overcome their disability” and achieved amazing things. I am not saying this is a bad thing, achievements should be recognised and I am all for raising awareness and funds for worthy causes. I also want to be clear, in no way am I criticising the amazing people who achieve incredible feats whilst living with a disability. But I worry that society expects that if people with ME/CFS, or any other invisible disability for that matter, just dug a bit deeper, if they put in a bit more effort they would find they can overcome their illness. Or worse still, that you aren’t really considered disabled unless you have proved you can overcome it through some herculean endurance feat or by raising millions for charity.
Before I became ill I was reasonably fit. I used to run, cycle, cross-train and rock climb. I can safely say that I get far, far more tired now from going for a short walk than I ever did from spending a day in the hills or after a long distance run or cycle. But strangely, as a disabled person, I feel that I am a fraud. Not because I am faking an illness, I’m not just for the record, but because I feel that I should have not let it beat me and that I should be able to do something amazing in spite of having M.E.
In a lot of ways, I feel there is a general perception that some disabilities are seen as more “worthy” than others. Almost as if you should aspire to be disabled or ill enough for people to notice but not so disabled you can’t do something that many able-bodied people would see as impressive. For example, if I went for a swim just now, I would probably manage a length before I was absolutely ruined. I’m sure many other swimmers or spectators would draw the conclusion that I was either catastrophically unfit or pathologically lazy. Neither is pleasant and puts me off going, to be honest. But if, say, a double amputee is in the pool at the same time then they are given respect and admiration or at the very least acceptance. I am not saying others with disabilities don’t deserve respect, of course they do. I just want to know why it is so hard to come by for people with M.E.
The simple answer seems to be the massive lack of awareness about invisible illnesses and the impact they have on people and families. We live in a consumer culture that gets our information, ideas and stereotypes from TV and the internet and we gather these in a hurry. The attitude prevails that if what I am interested in is not available to me via a quick Google with a response of no more than five sentences or a 20-second video then it is not worth knowing about. And there, I feel, lies the problem. M.E. is so complex, so misunderstood and there are so many conflicting opinions it would someone without direct experience of the illness an age to understand it. I’m pretty sure if I introduced myself to a stranger and said that I was disabled their first thought would be where’s my wheelchair and the second would be had I considered entering the Para-Olympics.
For the avoidance of doubt and for those who think that people who have M.E. have given up or are lazy, let me assure you that we are not. Answering the phone is overcoming our disability, so is making a meal, so is having a shower or getting dressed and for that matter so is staying in bed when we need to rest. Holding down a job is akin to a gold medal-winning performance and looking after a family and home is worthy of an investiture form the Queen. If you don’t know what we are going through you have absolutely no right whatsoever to judge. If you want to know, ask me or anyone else with M.E., we will happily tell you. And then you will see who is overcoming their disability.