Fibromyalgia feels like such a bullshit diagnosis. I'm in pain and you don't know why, so instead of continuing to look for the cause or referring me to a different specialist you give me a label that says "you have pain and we don't know why." After ONE blood panel too.
That's not a diagnosis, that's a cop out.
It's no coincidence that it's primarily AFAB people who get saddled with fibro diagnoses, and are told to diet, exercise, and go to therapy. Maybe they'll give us anxiety meds if we're lucky!
I want to know why I'm in pain. This is not an answer. This is giving up. If diet and exercise and therapy were actual fixes I would not be here, I'd be fine.
And all the studies I read on fibro are contradictory bullshit.
It's caused by trauma, wait no it's caused by prolonged stress and trauma and it might be genetic, no wait it might be autoimmune, IT SEEMS LIKE YOURE CHASING NOTHING. It seems like people keep getting diagnosed with fibro and then get ten other diagnoses because it's NOT AN ANSWER. doctors don't take it seriously, employers don't take it seriously, medication seems to either be out of the question for patients who have it or it doesn't work, and the treatment is go to therapy and act as if you're not in pain, what???
This is not a post for discourse, this is more of a rant, but thoughtful discussion is welcome. If you accept your fibro diagnosis that's fine, but I will not. I want to know Why.
i made a fibromyalgia pride flag last night! this has absolutely been done, but i wanted to contribute with one of my own. coincidentally, today is fibromyalgia awareness day, so. hi! if you're following me, are you aware of fibromyalgia? did you know i have it? you know now!
color meanings and background under the cut.
the colors in this flag were colorpicked from a northern pearly eye butterfly. most pictures of them are pretty brown, but they are purple butterflies—i think it's one of those things like, cameras are just really bad at capturing their coloring most of the time. in much the same way, you can't really tell by looking that someone has fibromyalgia, and i thought that was pretty fitting. i also just think they're really, really pretty.
i used the same format as the disability flag, because a lot of chronic pain is treated as pretending or faking, and i wanted to make it clear that we are part of the community and we belong here, in the same way that queer pride flags have mirrored the pride flag and the pride flag mirrored the bear and leather flags.
color meanings:
note: i chose multiple meanings for each color on purpose to cover a variety of symptoms, so please feel free to assign more to any stripe you please. i also tried to assign at least one positive thing to each stripe, because every color is dear to someone.
purple: hope / research / cold weather - not hope for a cure, but hope for support and understanding which leads to successful symptom management. research has already shown that fibromyalgia is an autoimmune issue, which is huge! i'm excited to see what it will teach us next. cold weather can spell out extra pain for those of us with fibromyalgia (like me), so let this stripe be a reminder to bundle up and be gentle with yourself.
lilac: bad weather / migraine / comfort - changing weather—and changing air pressure or temperature that goes with it—can spell pain for fibro folks, and hell hath no fury like a migraine coming on. for both, and every other kind of pain, comfort is a must.
off-white: brain fog / dull pain / ache / chronic pain solidarity - brain fog is a constant companion of mine; it curls around my shoulders like an affectionate cat, rubbing against my cheeks and rumbling in my ears until i can't hear myself think. this stripe is just off-white in honor of that feeling, and also because i didn't want this flag to be too eye-searing for those of us with sensitive migraine triggers. dull pain is a lot like that, but a lot less pleasant. this stripe also reminds us that we aren't alone in our invisible disability, and that we're hip to hip with a lot of really excellent company in the chronic pain community.
amber: nerve pain / sudden pain / joint weakness and related falls / warm weather relief - nerve pain, as opposed to inflammatory pain, tends to be sharp and feel 'electric'. i once described it to my doctor as feeling 'like there's lightning in my bones'. sudden pain is like that, too, and i've found that my knee suddenly giving when it was fine a moment before can be, as well. but this nice honey-golden stripe also reminds me of the nice day i had recently when i viewed the eclipse with my friends, sitting in the sun in my new skirt, quite literally sitting pretty in the sunlight and then, suddenly, lack thereof. warm weather is nice, when it isn't a surprise—a slope and not a snap.
brown: underdiagnosis in people of color* / solidarity with people of color* in our community - as is often the case in the medical community, there is a wealth of doctors willing to diagnose white patients with fibromyalgia, and those same doctors are largely unwilling to diagnose people of color unless those people of color bend over backward. this stripe is to recognize that, as i think it's important, and to stand in solidarity with people of color who have (or are seeking) a diagnosis.
(*the asterisk is to note that i am using people of color as a catch-all here, but very specifically this effects Black people the most, especially Black women. there is a long and incredibly ugly history of medical malpractice around not believing Black women when it comes to pain in the medical field which i am definitely not educated enough to speak on.)
i drew the butterfly vector myself, and here it is alone if you'd like to use it.
and a bonus-bonus version with the flag on it, to just kind of, slap on stuff i f you'd like. i dunno, i like how it looks.
Fucked up that figuring out how to consciously ignore your chronic pain doesn’t stop it from unconsciously affecting u. Sitting here like “why does every tiny little thing feel like the end of the world oh right my body thinks it’s time for wounded animal behavior when it’s actually just Wednesday”
Mutuals on the dash complaining about being sore from their workouts, I’m complaining about being sore because I sat all day at work and now I’m sitting for a 5-hour train trip, because if I don’t move my body exactly the right amount my fibromyalgia throws a massive fit. How did we use different formulas and get the same answer
