#systemic lupus erythematosus

[pained-princessluna]

I'm here, I'm weird and my joint pain is moderate to severe!

[wheelie-sick]

MY RHEUMATOLOGY OFFICE IS DOING A CLINICAL TRIAL STUDY AND I QUALIFY

I sent a message

[intersexgoose]

ASAB is so often used to neglect chronically ill people seeking a diagnosis. it hurts intersex and perisex people alike.

we need to get rid of the sex binary for so many reasons and disabled liberation is one of them.

lupus is a disorder with a ratio of 9:1 people who were AFAB to people who were AMAB. it is a disorder that is wildly dominated by people who were AFAB.

doctors often treat lupus as a "women's disease" and when they're not treating it as a "women's disease" they're treating it as an "AFAB disease." there is no room in the system for intersex people (no statistics on our prevalence in the lupus population) and no room for people who were AMAB (despite them being 10% of people with lupus) the biology of trans people, particularly those who have medically transitioned, is of course not taken into account.

this leads to neglect of people who were AMAB, intersex people, and trans people (particularly transfeminine but not exclusively) who have a dangerous, often life threatening autoimmune disease. doctors don't bother looking because "how could you have it? you don't fit this narrow presentation of lupus that I created in my head." people have died from this. lupus kills, especially when left untreated.

abolishing the sex binary would largely fix this problem.

the reason so many people who were AFAB have lupus is because of estradiol. (read more about why here) estradiol is a major determining factor in who develops lupus and who doesn't. it's the theorized reason for the sex disparity. .... but people who were AFAB aren't the only people with estrogen-dominant endocrine systems, and not all people who were AFAB have estrogen-dominant endocrine systems. you can develop lupus with a testosterone-dominant endocrine system but it is far less common.

so why do doctors look at ASAB instead of that actual cause, estradiol? (rhetorical question but the answer is transphobia and intersexism)

sex abolition says that in replacement of overarching categories of sex we instead identify individual traits. lupus is one example of thousands where focusing on a specific trait rather than a sex would actually be more helpful in narrowing down diagnoses.

intersex and trans people will continue to have their diagnoses missed until we abolish the sex binary and replace it with something more useful. there is no disabled liberation without intersex liberation.

[chiwosays]

shoutout to other disabled people with constant and debilitating pain, people whose pain can't fade into the background or be ignored throughout the day.

[indyviree]

god, how i hate having lupus. everyone thinks im fucking helpless, and they underestimate me. and it fucking sucks because normally they're right. on certain days i physically can't participate in my hobbies bec i'm in horrible pain. because of it, people just think im lazy and disgusting. i can never win. i can't do anything right, i don't know why i thought i ever could.

[spoonie-girl-next-door]

[gayaest]

Rawiya chibi 🪺🪷🍈🧸📚

[lupusbaby]

Severe pain episodes require an entire extra day to recover from the psychological effects of experiencing such severe pain. It’s kind of just like *what the fuck* for another 24 hours

[cav-core]

Me, at a barbecue at work: "I think I'm going to take my plate and go inside to eat so I don't get sick from the sun." Work bestie: "why is it called lupus if it's more like vampire disease?"

[pained-princessluna]

Chronic illness be like: now our right knee is hurting

Me: ok. Is this a new accessory or should I get it checked out?

Chronic ilness: I don't know sis, sounds like a you problem tbh...

[wheelie-sick]

lupus really is the disease of inviting people to crash your party

"ok fine lupus you can come to the party but JUST. YOU."

lupus: okay!

lupus at the party: I'm here and I brought antiphospholipid syndrome, kidney disease, autoimmune hemolytic anemia, autonomic neuropathy/dysautonomia, depression and anxiety, raynaud's phenomenon, osteoporosis, thyroid disease, sjögrens syndrome, myositis, hypertension, and about 15 others 😃

[snandle]

The fact that House says "it's never Lupus" suggests it's either too common (or too easily diagnosed) for it to end up as one of their cases or that Lupus is so rare there is actually just no way it's Lupus

[puffyrice]

I’ve been debating whether to talk about this stuff on here, but I need to just get it out somewhere.

I’m disabled. I talk every once in a while about it on here, but I got really sick a month into my first semester of nursing school. I have lupus, fibromyalgia, POTS, and Ehler’s Danlos Syndrome. When I got lupus it caused me to be so sick I could barely walk at all for about 4 months.

I got on all the meds and I do PT, but I am physically disabled. I have terrible fatigue and chronic pain. My pain isn’t really well managed yet, and I walk with a cane. It’s hard for me to be on my feet for more than an hour or so with my cane, depending on the day. Every day is unpredictable.

I’ve been forcing my way through nursing school by sheer stubbornness, even though it makes me seriously ill. I really actually love being in school. I love studying and learning and I’m even tutoring other nursing students this semester.

This semester is my first hospital clinical, which starts this Friday. The thing is, there is a not zero chance that my body literally can’t handle 9 hours of clinical.

Before I was sick I happily did 12+ hours as a vet tech. Now, I have a hard time getting up the stairs or going to the store most days.

There is a chance I will have to leave school, whether it be temporary or permanent. I tried to be able to split my clinical into 2 half days, but they declined that.

So, I may not be able to be a student or a nurse, even though it’s what I love. I’m trying really hard not to connect my whole identity to this goal, but it’s hard not to when I’m so passionate about it.

Anyway. I really appreciate anyone who read all this. I’ll post an update after my Friday rotation.

I’m terrified and heartbroken at how my life suddenly got all flipped around by chronic illness. I hope I can keep giving you the content I love sharing so much.

[burntoutoliver]

"Lupus"

I hate being chronically ill.

[chamilique]

i feel perpetually behind compared to people i know all the time and i don’t really know what to do about it. especially because it’s not something i can really fix.

being severely chronically ill is super isolating, especially because i can’t do much anymore. watching other people go to school and play sports and hang out often while i can barely keep up anymore is lonely. feels like i’m wasting my time even though i don’t have much of a choice.

growing up disabled was hard, obviously physically but also socially. i was either left out of stuff because other kids didn’t wanna “catch” my illnesses, or i wasn’t able to keep up with them when they did stuff.

[spoonie-girl-next-door]

You have survived 100% of your worst flare days, and you will survive this one. Just hold on.