I follow the blog of a young (at least in comparison to me!) teacher who has recently been afflicted by something that sounds very like ME, although I hope for his sake it isn't. Nonetheless, he's laid low at the moment, and has just had to pull out of a long-planned long distance cycle ride.
He's blogged about his feelings about all this. As can be imagined, he's utterly fed up. He feels he is letting people down, and he's worrying about his longer term future.
These are feelings I know only too well, as does everyone else with a chronic condition. I think that People With M E (PWME hereafter) have a special extra burden to bear because of the "controversial" nature of our condition. PWME have a habit of looking quite well when we aren't crashed out on a sofa. We can walk and talk and stuff just like everyone else. It's just that we can't do it for as long, or as quickly. Sometimes, if we stand up too quickly, or bend over rapidly, the game is over. I usually have a couple of really good hours per day in me, and I've learnt how to run my life so I can, to a point, choose when to use them. See me in those two hours, and I look fine.
PWME also have to deal with history of cynicism toward their illness. It was once called "yuppie flu" in the press, and derided as a licence to malinger. There are still vigorous remnants of that attitude to be encountered amongst medical professionals, those who decide eligibility for assistance and a lot of other folk who ought to know better. Charlatans and quacks offer ineffective and inappropriate cures, and in the UK appear to have successfully convinced Government agencies in the case of Graded Exercise Therapy.
What M E needs is what the medics call a "sign" - a clear identifying symptom. The classsic example of this, as well as being a classic piece of medical black humour, is "Custer's sign". This relates to victims of severe traumas like a car crash. If a male victim is found to have an erection on admission, it is an indicator that he has broken his back and may well be paralysed from the break down - hence "Custer's last stand". He's got a real problem, but at least he has no need to convince anyone of it.
M E is much more nebulous thing. Convincing the authorities we are ill is a laborious process. This leads to worry, about being believed, about whether we will have an income, about the progress of the illness. We feel guilty because we are not pulling our weight, we are leaving tasks for others, and we wonder if we have turned into malingerers overnight. On top of all this we are actually quite ill with a condition that varies, but is often highly disabling. Our thought processes are slow, we are forgetful, we are not able to organise easily.
So here's a new acronym - WIG - Worry, Illness, Guilt - for the burdens a PWME carries about. The worry and the guilt tend to worsen the condition, but are built into the experience of ME. Resolving that paradox is a key part of coping with the illness, and I wish all the M E affected readers of this blog success in finding a way through.