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In regards to #MEawarenesshour there’s a sentiment that’s flown around quite often & I’ve seen more of it recently so I’d like to give my 2 cents
(In true ME/CFS fashion this will be disjointed from cognitive issues but I hope the heart of it is sympathetic)
(In true ME/CFS fashion this will be disjointed from cognitive issues but I hope the heart of it is sympathetic)
There’s a lot of discussion about wether MEawarnesshour or advocacy in general does anything. Does it reach a larger audience beyond those effected? Does it change anything? Does it even matter?
Maybe advocacy never will reach beyond us. My thoughts may never change the world. Maybe my effort is completely futile & goes to waste. But you know what? my advocacy brought me closer to others like me. It gave me new tools to better express my feelings.
I have a whole years worth of posts that express my struggles that I can then easily present to others when before it would be too challenging to discuss with someone all at once. Maybe I can’t change hundreds of lives but advocacy changed my life.
With my advocacy done maybe I
With my advocacy done maybe I
didn’t change a dang thing but you can’t say I didn’t try. My advocacy is proof I was alive, I did what I could, wether others listened or not weight is off my shoulders. Like so many in history before me I am in a position where my life might always suck but you know who it
might not be terrible for? The future folks who won’t have my same struggles because I was there, I lent my voice, didn’t want to have too, didn’t try everyday, but I did try when I could. For me that is a life well lived. However of course maybe that advocacy did nothing to
reach beyond my peers, what’s so wrong with only reaching peers? Without the community, & disabled voices I’ve heard from I’d be lost & alone. Their words mattered to me, my life, while not a hundred, matters & if I can be that voice to help only one other every effort I’ve made
was worth it. There’s a story called the sea star story where 2 folks come across beached sea stars, it’s impossible to save them all but one person starts throwing them back into the ocean the other asks ‘why? It’s obvious you can’t save them all it won’t make a difference?’
And the other replies after throwing one ‘it made a difference to that one’
That is what I strive for in advocacy.I can’t help or change the world but I can help one.I can do what I can.I’m not gonna break my back on it, not even break a sweat for it but if by adding my voice to a few focused post here& there helps that 1 soul it’s worth my doing to me
On one more note I hear floated around,
What if ME/CFS is actually multiple different illnesses because it’s a garbage can diagnoses that aren’t really ME & advocacy only helps out those types & not whatever it is I have? If any disease that either is or is ME/CFS like gets
What if ME/CFS is actually multiple different illnesses because it’s a garbage can diagnoses that aren’t really ME & advocacy only helps out those types & not whatever it is I have? If any disease that either is or is ME/CFS like gets
solved, even if it’s not what I have personally, that’s a win in my book. We may be different but I’m of the belief we are part of the same puzzle & if a piece near mine is placed down my chance become greatly higher at being solved.
Also any illness of any type being solved is good news regardless. What I have is real, the names, definitions may change, but I have something that with our limited knowledge is currently known as ME/CFS. others have it too.
I vie for the solving of this condition to be known, studied, & solved but if along the way we help others in that pursuit, fine by me. Awesome in fact.
Wether you do or do not do advocacy is completely valid. Hope people look after themselves & treat themselves with the upmost kindeness.
For me advocacy at its most negative is still a plus for me that’s why I try. For others not sharing that opinion or too ill to be able too that’s absolutely fine, but for those willing to try & become discouraged, ur doing great & I’m happy to advocate from my bed with you
