Saturday, 3 May 2014

I really can't be bothered any more

I came here with the full intention of writing a moving and inspiring blog post about M.E for awareness week. How the research isn't generally looking for a cause of the symptoms. The politics and pharmaceutical and insurance company lobbying demonising millions of real people with a real illness. People who have this real illness that is as debilitating as the illnesses that get all the celebrity endorsements on the awareness campaigns. What do we get? Martine McCutcheon 'curing' her M.E with a fruit juice diet. How we play whack-a-mole with symptoms every day while being labeled scroungers and hypochondriacs. How even social services don't recognise fluctuating care needs for a fluctuating condition which is by its nature not visible when you look at a person who has it. How we've been constantly let down. M.E. CFS, Fibro, CFIDS - all of these diagnoses are deadend dustbins. We are diagnosed with these illnesses, and left to rot.

We're objects of ridicule, "Mental Malingerers", lazy scrounging layabouts - I've been told in comments on this blog that I should stop whining about not getting handouts any more and get a job instead of lazing about in bed all day. I wonder if yet another year, and yet another awareness week will make any difference. Even if Einstein didn't say it; insanity is doing the same thing and expecting a different result. I've watched the calendar turn, blogged for awareness week, and watched the same old same old demonise, marginalise, trivialise from the press.

We can play invisible illness bingo every day; from "but you don't look sick" to "So what's wrong with you, if you don't mind my asking?" From "Oh you just need to get out more." to "Oh my third cousin's neighbour had that, she used magic moon pills from lala land, she's fine now." and "Oh that's not what's really wrong with you, you should get tested for trendyillnesitis, they can cure that." and the killer. "Oh that's all in your head. You can think yourself well if you think positive. Lets do some crystal herb homeopathetic acupressure." I'm trivialising things that have lost me relationships, family and friends through the long sick-years.

You see there's no cure. Imagine that you wake up tomorrow feeling like shit, and you don't get better. Months go by and you get a diagnosis and put on treatment protocols that don't cure you, and in some cases make the illness worse. Meanwhile very few people actually believe you're ill, the popular press and comedians can rip the piss out of you and your illness and you can't complain. No defamation laws prevent them from telling the world that people with a particular illness aren't really ill. There are days when you wake up not remembering your own name through the fog of pain and cognitive dysfunction, and there are the darker days when you wonder if they might be telling the truth; that it's your own head putting you through this hell.

I can't be bothered trying to explain it any more, the ones who matter know it's real, those that don't understand don't matter.

Which are you?


  1. Couldn't have put it better myself x

  2. Thank you for putting in words that which I am often too ill to put down myself.

  3. some how I have to have a glimmer of hope...and a voodoo doll with the face of the NIH and CDC on it at the same time.

  4. Thinking about you today, all day will be my focus now. Thank you for speaking for others who are too tired to do so at this moment. Everyone has to take turns.

  5. Twenty years on, pushing myself as an activist , talked,lectured, seen all those charity bosses, had enough too. I have watched the lies, the nods, and the patronisation . hope? What hope ? However, I have decided to survive not because of them but to spite them x

  6. Thank you for the kind words, all of you. It means a lot.