we are about an hour into rare disease day in my timezone! (it's always the last day of february, whether that's the 28th or the 29th.) the true prevalence of mast cell disorders is unknown, as they are often misdiagnosed or ignored. and mast cell activation syndrome, the most prevalent kind of mast cell disorder, only had diagnostic criteria laid out for the first time in 2010. so whether or not it's truly rare is really up in the air!
(personally I suspect it is just aggressively underdiagnosed but I'm not a research scientist or diagnostician right now. and even if it is rare, it's gonna be a lot less so than it was 5 years ago as certain respiratory infections are known to trigger it into visibility. that's what happened to me when I got mono at the end of 2015, further compounded when I got covid in 2022.)
all chronically ill people face a lot of hurdles when it comes to seeking diagnosis, accommodation, and treatment (all of which can be severely complicated by any intersecting marginalities), but rare diseases present a special challenge.
for example, I have an immune disorder. my immune system does not like being alive, my mast cells are way too jumpy and throw a tantrum over every little thing. you'd think an immunologist would be the one to treat me, right?
I've had 6 immunology referrals rejected in the past 9 months alone. multiple major immunology clinics in my major city tied to a major research university outright refuse to see patients with "mcas" written anywhere in their chart.
after 8 years of being debilitatingly ill, and suspecting it was immune mediated for 6, and getting it confirmed beyond a shadow of a doubt by the bone marrow biopsy last month, I will have my second ever appointment with an immunologist. another 2 1/2 months from now. the first immunologist lied to me about the reliability of the one available blood test, when I first came up with the hypothesis by myself 6 years ago, and forced me to abandon my (correct!!! now proven!!!) hypothesis for 3 entire years while we wandered around lost and got nowhere other than even more thorough process of elimination.
okay, well if my immune system is attacking me, maybe it's technically autoimmune? that's the rheumatologists instead of the immunologists, what do they have to say? dick all my dude, I don't have rheumatoid arthritis so they just shrug at me and go "idk, fibro? I don't know why you're here" and send me home with nothing. (I literally had a rheumatologist say to me, verbatim, "I don't know why you're here." buddy it's your job to read the chart and decide if I get seen or not, you tell me. at least he had a snazzy outfit.)
being chronically ill can be a terrible struggle no matter what, but a disease that is perceived as rare, accurate or not, adds a whole new layer of bullshit. (and of course there are much much rarer diseases out there, with even more hoops and dead ends and struggles and all-new layers of bullshit that even I don't have to deal with!)
anyway I'm having a shit time and using this awareness day as an excuse to productively bitch about it 👍
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S3 arthur trying to act normal around gwen while he had such a horrific crush on her was so funny. bumping into her like "you might have heard about my engagement. don't worry!! I called it off. wasn't feeling it. so I'm still single if you even care. its fine if you don't"
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Hello I am emerging from the Big Sad ™️ to post a feysand snippet 👀
My Nessian and Azris WIPs are next, in that order! Sorry it’s been a minute 💋
Three bottles of cheap wine deep into their good riddance to asshole boyfriends celebration, when she confessed to Mor that she missed feeling like herself, missing feeling in control of her life, she expected her friend to sympathize, to reaffirm that she was “better off without that scumbag, babe,” to maybe (assuming she was sober enough in the morning to remember) send a motivational tiktok about the importance of “self-care” on her “healing journey.”
But Feyre didn’t think that this could possibly fall under the guise of “self-care.’ “Mor, I…”
“That doesn’t sound like trust, Feyre.”
Feyre snorted. “It’s just that—”
“No. You wanted to move past him and feel like yourself again? This is the best way to do that,” she said, grabbing Feyre’s hand and dragging her into the store. “Find one thing. One. We’re not leaving until you do.” And with that, she squeezed Feyre’s hand and let go, moving into the recesses of the store with enviable ease.
Feyre rolled her eyes, not that Mor could see, and started following her into the boutique, passing racks of lace and silk that were loosely arranged by color and letting her hands graze the fabrics, buttery and slick beneath her fingertips.
She stopped as her hand caught on a red bustier and she savored the feeling of cool silk broken up by delicately stitched whorls of black lace. It was nice, but more than that, it was exactly the kind of thing that Tamlin would have hated. He preferred to see her in pastels, floral and lacy and frothy and soft, meant to remind them both that she was delicate, feminine, fragile. But this piece was something else, something that felt more her. Or, at any rate, the version of her that she was trying to find again—someone self-assured and powerful and strong.
Idly, she flipped over the tag and almost laughed aloud at the price. She had known it would be expensive, but $300 for so little clothing seemed ridiculous, even for someone as ridiculous as Mor.
“See something you like, darling?”
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