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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rdj the (whitewashed) electric boogaloo
This is a reminder to everyone who's excited about RDJ's casting as Doctor Doom that this casting is whitewashing. Victor Von Doom is a Romani character and has been a Romani character since his introduction in the 1960s. (Fantastic Four Annual #2 [1964]) Not only that, but his Roma identity and the persecution he and his family faced due to it is integral to his character, it is what forms his identity. (Books of Doom by Ed Brubaker) Even if on the off chance this casting is meant to not be Victor but instead be some variant of Tony or whomever else becoming Doctor Doom, it is damaging to the character to rob him of that important cultural background. Doctor Doom does not exist without that history. Fans have been pushing hard to cast Doom as a Romani actor for years, especially since the MCU has whitewashed other Romani characters. (Wanda, Pietro, etc) This casting is not a celebration moment, it's fucking heartbreaking that the MCU repeatedly ignores the important and nuanced cultural backstories of characters.
I know I can't change anybody's mind on whether or not you want to be excited about RDJ's return to the MCU. But I do think at the very least you should be mad that the MCU is baiting us all and destroying nuanced and interesting characters for the sake of self-referential easter eggs and nostalgia bait. Because that's what it is. Feel how you'd like to feel about RDJ's return, but personally, this is soul-sucking. I had such a deep love for the MCU as a teenager, it was obviously something incredibly formative to me, especially Tony Stark. This isn't recreating what I fell in love with the MCU for. This is turning a well-planned and artistic storyline of adaptations into cheap cash grabs and fan service. Because, I think we're past the point of being able to call the MCU an adaptation of anything. They can use existing characters' names and powers, but to say they're being properly adapted is laughable.
This is not an adaptation of Doctor Doom. This is RDJ the Electric Boogaloo because Marvel's fear of losing the interest of dedicated MCU fans overrides their willingness to tell stories that are genuine to the characters. I don't know what there is to be excited about that. The MCU has lost its authenticity and aside from a few projects, feels heartless. Every movie is a copy of a copy. This announcement isn't something celebratory, it feels like a death knell of a cinematic universe that's so desperate to cling to relevancy it's resorting to nostalgia for a character/actor who hasn't even been dead for a decade. We're not getting anything new, we're just rinsing and repeating the same song and dance.
I get it. I love Tony Stark, his death destroyed me and I to this day, rue the ending he got in Endgame. It misunderstood his arc and it robbed him of a satisfying conclusion. But the solution to that isn't dragging the corpse out of the grave five years later to whitewash an existing character with rich and interesting nuance, just to forcibly tie his existence in the MCU to Tony. Whether he is a variant or not. Why would you want someone else's fave's legacy to be destroyed simply so your fave's legacy can go on? Hell, if we were really all so hellbent on the return of RDJ and/or Tony to the MCU, we have the multiverse for a reason. There were other ways to do it that didn't whitewash and ruin someone else. This just. Isn't something to be happy about.
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admittedly, i am afraid to talk about this, but have wanted to for a long while. i don't see a lot of people discuss this kind of thing, but i decided to do so for the me who was struggling and didn't know. also i have no idea where i am going with this and it's very late for me rn so here's a whole ass ramble on vent art. and also a bit more on how it's impacting how i view my art, now. i am terribly sorry if it's not very cohesive, my thoughts on it aren't yet cohesive either WOOPS
i wanted to talk a bit about how vent art really impacted my mental health, and how the idea that art needs some kind of meaning to have meaning really has been weighing on me lately (i know this is a concept i am assigning to my work and is not actually the norm/standard expectation of others consuming art. but it IS a sentiment i have seen enough that does impact me).
i want to specify, obviously i am not saying vent art is bad.
nor that doing vent pieces, or vent blogs, will ultimately result in what i went through for a number of years. rather, that this did happen to me, and there is a near impossible chance i am a unique case in any experience i will ever have. if you do vent art and it helps you, that's good! im not judging anyone for anything here. if your experience does not match my own, that's what it's like to be human~. i am not invalidating anyone on purpose by sharing my own experience. sorry for the insane disclaimer but it will eat me alive if i go to sleep thinking "what if they think x cuz i didn't say y and think im a terrible person"
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i used to do vent art frequently (you won't find much on here as it was uploaded to a personal at the time). anytime i felt down or had a line of dialogue in my head making me feel bad in a way, i would draw for it. but the way i had interacted with it was really unhealthy. it became a terrible feedback loop where i'd feel bad, draw how i felt bad, look at the art, and ruminate even more on how i felt bad, until it spiralled so out of control i would lose touch with reality and get lost entirely in feeling like garbage.
i would just get so lost in the cycle with vent art that it would make my mental space worse and worse, and i would use the vent art as a negative confirmation bias. the words that hurt me i wrote down and anytime i looked again, they would hurt me again. but i would keep looking, and i would keep drawing.
i have always used art as an outlet, but for some reason the way vent art impacted me was unhealthy. it wasn't a good outlet. and it took me years to cut ties with it. i relied on vent art for a long time, but it took a lot of introspection and thinking to realise it wasn't the release i thought it was. and it was hard to let go, too.
i haven't touched the blog in a few months, now. i haven't done much vent art at all since then and genuinely, i've been doing SOOO much better. i no longer ruminate nearly as much as i had done so, i no longer get caught in a feedback loop that lasts for days to weeks. i still feel like garbage like people tend to do, but i don't put myself in a cycle over it anymore. i have gone back to it a few times in moments of desperation, but what used to be every week/every few weeks is now once a month maybe. and not to the extent at all (i would oftentimes post ~20 images in one night, before).
but i keep thinking about how, while the way i had done vent art was bad for my mental health, i keep feeling that just because i do sparkly cute and happy drawings, now, or drawings with no real meaning, that my art has nothing beyond face value... i do like a lot of my vent art. i think their compositions, or hidden messages and meanings, or colour use, was interesting.
but it wasn't worth the price for me.
so i am a bit caught in an in-between, here. my favourite form of art is the expression of love-you liked something so much, you dedicated time to draw it. and yet i cannot ascribe that to my own work very often. i think that man i wish i could make art with some kind of deeper meaning, that speaks to people, that's more than just pretty colours or shiny shading or a character everyone likes, or a character i like. but i just... don't know if it's for me.
ultimately, i could develop a healthy relationship with expressing and exploring negative emotions or experiences through art, but... do i want to? do i have to? do i need to? is it not enough to just draw something because... i like it..?
of course, the answer is yes, draw what you want, draw how you want, it's your art. but i am still trying to come to terms with that idea. i dont want to be seen as some shallow artist who just draws what's cute and pretty because they can and it's all they can think of, but like what if that's just what i like to draw??
in the end, that alone is good enough, drawing because you like to, because it's fun, because you like the thing you're dedicating time to creating for. it's just hard to grapple with after discarding a type of art that i felt was the only way i drew "for real".
anyways i am sorry this is soooo fucking long, and for all the clarifications (IM STILL NOT SAYING VENT ART BAD AND EVERYONE WILL DO WHAT I DID!! Dx) and the fact i had no real point here (probably)
anyways i will continue to draw what i want because i like to, as i have always been.
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