I have a friend with ME, or Myalgic Encephalomyelitis. She’s had it since her daughter was small, when she spent months exhausted and in pain, crawling around the floor because standing up was too hard. Eventually she got a diagnosis.
If you met her at home, you might not guess that anything was wrong. She’s cheerful and coherent, and she tries to keep things neat and tidy. In fact, she’s pretty good at hiding her symptoms. She sleeps a lot, and a cold will knock her out for a week, but otherwise she seems normal. It’s only because I’ve known her for so long that I understand what her condition is like.
She asked me once what I would count as ‘severe pain’. I said that any pain not even touched by strong painkillers was severe. She just looked at me, and that’s when I realised she’s in pain like that every day.
Some people dismiss ME as an excuse for people to be lazy. My friend was training to be a bricklayer when she got ill. Even after that, she worked for two mornings a week until new government legislation stopped her. Now she volunteers for a few hours in a charity shop, because she likes to feel useful and it makes her leave the house. If she was well, I know she’d be working full-time. I know she can’t do more than she does now, and it’s because her body doesn’t work like it’s meant to. 1
I’ve seen her try to walk on Ilkley Moor during a period when she felt well, and after half an hour her muscles just gave up. She stumbled forwards as if she was drunk, and every step was excruciating.
Of course, she’s been declared fit for full-time work.
You only have to read blogs like this 3 to see that the current work capability assessment is deeply flawed. When the company in charge of carrying out these assessments starts harassing people in comas and the impact of failing the assessment is 10,600 people dying or committing suicide, surely it’s obvious that something is wrong. 4
Not to Iain Duncan Smith, who allegedly sent a memo stating that it would be ‘business as usual’ in terms of work capability assessments, even after a court ruled that his fitness for work test “discriminated against many disabled people”. 5
This is, after all, the man who referred to those on certain benefits as ‘stock’ 6, which frankly makes my blood run cold.
Yeah, I’m not that keen on Iain Duncan Smith.
To read more about ME, please visit this website: http://www.meassociation.org.uk/