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M.E ‘Warriors’

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May112023
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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.


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By EmmaMay 11, 20233 Comments

Author: Emma

http://chronicallycraptastic.com

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3 Comments

  1. Ami says:
    June 10, 2023 at 12:11 pm

    I completely agree with everything you’ve said here! That term grates me for exactly the same reasons, yet as you say we have to ‘fight on’!

    Reply
    • Emma says:
      June 10, 2023 at 6:28 pm

      I’m so glad it’s not just me. I was really apprehensive about putting it there how much I hate the term, in case no-one else felt the same – but it pans out there’s actually quite a few of us out there who it grates on!

      Reply
    • Cathy says:
      January 19, 2025 at 12:49 am

      I agree. As a former palliative care nurse I also hate it when people with cancer lost the fight with cancer.

      Like they didn’t fight hard enough. Like they had a choice.

      I have ME/CFS I’m doing much better but when I was really bad what actually helped was stopping fighting and living within my limits. Saving energy where I could to allow me to function.

      Reply

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Hi there! I’m Emma. I’m the shit-head in the picture. A picture can say so much about a person, whilst also saying nothing. Well, nothing in this case other than: I clearly like lipstick and poo hats. So, now we’ve established how tasteful and stylish I am, allow me to tell you a bit about myself...

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