So there’s this thing within the M.E community whereby many people refer to themselves and each other as chronic illness/M.E ‘warriors’. Personally, I never have, and I doubt I ever will. The term grates on me on a visceral level, and makes me wanna scream until I puke. But, why is that?
I’ve been digging deep lately to try and figure this out. And the only answer I’ve been able to come up with is this: warriors are fighters, and I believe sick people should be resting and following medical advice – not doing battle.
Yet, people with M.E have no choice but to fight. And that bugs me.
It’s a grave injustice that people with M.E have been battling to be seen, heard and importantly – believed … for nearly half a century. That more research funding has been allocated towards finding treatments for male pattern baldness than M.E.
I mean sure, going bald must suck – but ya know, not half as much as losing your career, home, relationships, ability to function independently and pretty much everything that gave your life meaning. Which is what often happens with M.E.
Thankfully, times are changing and the 2021 updated NICE guidelines on M.E certainly reflect that. But sadly, we are still lacking appropriate government funding for research, answers, and consequently, we are lacking the support we deserve from medical professionals, employers, benefits officials, and on occasion, due to decades of misunderstanding and stigma surrounding M.E … society.
And so, despite the more severe cases of M.E being some of the sickest people on Earth (studies have found quality of life in people with Severe M.E to be worse than that of people suffering late stage kidney failure) … we must fight. Warrior style (whether I like it or not!)
Because, as the Manic Street Preachers once sang:
‘If you tolerate this, then your children will be next.’
… What a horrifying thought.
Image (below) – a desperate plea for change, because I suck at being a warrior.