Petition to get Fibromyalgia and CFS properly recognised.
For those of you who don’t know, fibromyalgia and chronic fatigue syndrome have a lot of overlap – as far as I know anyway. It’s basically exhaustion, pain, mental exhaustion, anxiety and a whole lot of other things all bundled into one big messy label.
The thing is, fibromyalgia and CFS are not deemed “proper” disabilities by the UK government.
I can tell you that fibromyalgia is hugely painful, incredibly debilitating and a really hard thing to fight against. Being 24 and not knowing if, when you wake in the morning, you’ll be physically able to get out of bed is a bloody scary thing, but it’s also really inconvenient. Because of my fibro, I’ve ended up repeating a year at uni. I’ve had to leave a well paid job which I was good at, simply because they couldn’t reasonably adjust their workloads for me. When it’s something that we have to reasonably declare at interviews (since it needs reasonable adjustment and employers would probably be able to yell at us if we didn’t), then surely the government should recognise this? Especially since it’s been sanctioned by the World Health Organisation?
Just because you can’t see it doesn’t mean it’s not real. Yes, I know it’ll be hard to test for. Yes, I know people will try to defraud the system by claiming to have it, but the same can be said for almost any illness. If you actually talk to someone with fibromyalgia you can tell they really suffer. They will tell you of the days when they fall over things that aren’t there, the days when they can’t even move out of bed because the pain and exhaustion’s just too much. They will sit there and not make a fuss, and state these things as facts because it’s just what we have to deal with. There is no cure, there is no magic word, this is just normal for us.
We don’t want to be treated as special. But we don’t want to be ignored either. It isn’t fair that we have to put up with people telling us that we “look just fine” and that we’re “perfectly healthy”. That isn’t for Everyday Joe to decide – a medical professional has diagnosed us. Now stop prodding us and treating us like mental cases, and just admit that the pain is damned well real!!!
Ok, rant over now – going to eat some stuff. Oh, no wait… my jaw dislocated last night in my sleep and I can’t chew. Guess it’s soup for the next few days!