#disability rant

[nondivisable]

disabled people are allowed to have hobbies that clash with our disabilities by the way

I'm allowed to like journaling even if my hand tremors make it so I can't do something as "pretty" as an abled bodied person

I'm allowed to like crocheting even if it's bad for my joints and it takes me double the time it would take someone else to finish a project

and yes I'm trying to switch to knitting which is lighter on the hands, but even that - even fucking using my phone - makes my finger hurts

I'm allowed to complain about it, just like you - specially if you're abled - are not allowed to tell me off about it

it's so hard for us to find joy, you're not allowed to police the small things that help

#chronically ill #spoonie #chronic pain #cripple punk #cripplepunk #ableism #disability activism #disability justice #chronic illness #disability rant #arthritis

[audhdnight]

Just thinking about the common experience of late diagnosed disabled people of “the normal amount of pain is none” and how we’re just supposed to know that despite *some* level of pain being OUR normal for our entire lives, even if it’s usually not super bad it’s just always there.

Thinking about how, when I told my mother this, she asked me “So what’s hurt?” Which is very different than “what hurts?”

I looked at her, confused. “Nothing is hurt. I just hurt.”

And she says “But where do you hurt?”

“Well, right now it’s my stomach and my ankles-“

She cuts me off. “So you twisted your ankle?”

“No,” I say. “My ankles just hurt. I’ve been walking today.”

Now it’s her turn to look confused. “Just walking doesn’t make your ankles hurt. You must have sprained them or something.”

But I shake my head. “Nope. This just happens on days when I walk more than a little bit. My ankles hurt first, then my knees by lunch time. And if I don’t take a nap and stay on my feet all day, my hips will be hurting too.”

“Oh.”

Joint pain is my normal. Sometimes, if I barely walk all day, the ache in my ankles is barely noticeable and doesn’t affect my functioning because I’m used to it. If I do what most able-bodied people would consider to be a “normal” amount of walking, almost all of my joints will hurt by supper. If I have to wash dishes or run any errands, I’ll hurt so bad I can’t walk for the rest of the day.

Then there’s the chronic migraine attacks. I used to have them multiple times a week as a child, and no matter how I explained myself, nobody ever understood that they weren’t just headaches. I experienced those too, and frequently, but they were not the same. Thankfully, at the age of eleven, I found an article explaining migraine triggers. I was able to identify a few of my own triggers, and the frequency of my migraine attacks reduced to maybe a couple a month. For a few years I was basically on cloud nine, I’d never experienced such a lack of pain before and it was so freeing. Unfortunately, migraine is a progressive condition, so the attacks have gotten more frequent over the years.

And then there’s the “random” pains. Some mornings I wake up and my stomach hurts. Or my chest. Or my back. These are just things I have to live with, because my body’s connective tissue is… well, for lack of a better word, faulty. And I never knew that other people didn’t experience this, because how could I? We never talked about it. Sometimes I’d hear people complain about back aches and just assume they were like mine. Of course, I knew that injuring yourself could cause muscle aches, obviously. But I just assumed that *most* of the time, other peoples bodies hurt like mine did. I didn’t realize that humans aren’t supposed to “just hurt” without a connected incident.

And when I try to explain this to able bodied people, their response is always the same. “Well, everyone’s back hurts sometimes.” “Everybody gets headaches sometimes.” “You’re not special just because you’re too lazy to walk. I still go to work when I don’t feel good.” And no matter how many times I try to say that No, you don’t get it, I *always* hurt, they still brush me off and dismiss me.

#connective tissue disorder #hypermobilty syndrome #joint pain #migraine #chronic migraine #migraine attack #invisible disability #spoonie #disabled #disability rant #nightramblestm

[whydoifeelthisquiet]

I truly can’t articulate how enraging it is to be treated as inhuman simply because your body & mind are deemed as misshapen and alien to society.

I can’t articulate how upsetting it is that barely anyone speaks about the Disabled community when discussing social justice issues, for there to be crickets from mainstream media surrounding Disability. Yes, a lot of media attention is performative, but the Disabled community rarely gets basic acknowledgement. Basic acknowledgement goes further than people think.

Multiply marginalized Disabled people aren’t even welcomed to celebrate the other facets of their identities because ableism knows no bounds, it exists in those communities too.

People tell us to “stop playing victim” and “speak up”, so we do. And the responses we get are cruel and inadequate. We’re infantilized, used as inspiration p*rn, shut down, called “entitled” & “dramatic”, harassed, verbally abused. And worst of all? We’re ignored.

It’s Disability Pride Month and nobody but Disabled people are mentioning it. I can’t possibly articulate how infuriating it is trying to get people to understand that we’re beautiful human beings drowning in a society that clearly doesn’t value us. I want to speak up for this community and even for myself, but I come up empty, I’ve tried before and I no longer feel like I have bravery to spare.

It’s near impossible to throw out a life raft when you’re the one drowning. We need allyship.

#abby doesnt shut up #forgot this was in the drafts! #disability pride month #disability #disability rights #disability rant #rant #TW ableism #ableism

[peepawsammywammywoo]

Why are teachers in the learning support class/special Ed class SO abilest

I have chronic pain, muscle weakness, joint issues, poor blood circulation and so much more, I'm also autsitc

Yesterday I had gardening in the class, that everyone participated in. It was cold, and I was unable to feel my fingers properly. I explained that to my teacher. She gave me a sitting down task, cutting suff, I couldn't do it as my fingers were all tingly and numb. My teacher, I'm calling her Mrs W.

Mrs W said "you have to keep trying and trying and trying. If you stop using your body you will loose the ability to use it" (its a 90 minute lesson I'm sure I would be fine. And at some point I won't be able to use my body properly, my condition IS worsening.)

At 12, mid way through the lesson I had to get my adhd meds, I had to walk to get them. My legs were ever so wobbly, even using my walking stick. Mrs W saw this. And saw how I was struggling to hold my water. She then about 5 minutes after that said "If you can't cut vegetables why don't you stand and water the garden"

I can barley stand on a good day ..

I explained I couldn't and she lectured me about how "Oh your really going to sit there the entire lesson doing nothing??"

Later, about 12:20 she asked me to go inside and get a iPad to check the weather, I said I could do it on my phone so I didn't have to walk, she said "why? You were able to walk earlier just get up and get the ipad" (istg you can check the weather yourself Mrs w)

I explained that I couldn't walk at the moment and she went on a big rant about how "Oh, but your able to walk to the bus at the end of the day, you can walk a few steps to the ipads!" (I don't even walk far to the bus...)

I explained how my contion changes and I might be able to run at like 6am but at 1pm I might not be able to stand. It changes. All the time. (I can't actually run but it was an example)

And she had the balls to say "yeah. It changes when you want it to. When you need to walk"

What the actual heck??

Your a teacher in the learning support class, it's full of mentally disabled or physically disabled students (or even both)

I cried after that, because I wish I could choose when i can walk, a teacher. Came up to me and asked if I was okay. Before I could even respond Mrs W said "yes! He's fine"

I was not fine, I was in tears and alot of pain.

I cried for an hour till a teacher helped me inside and called home.

That is bullshit why are teachers in that class so unhelpful???

(Apparently they don't even need training to teach in these types of classes, they don't even have to know about disabilities and stuff)

#disabled teen #chronic pain #disabled rant #disability rant #abelism #abelism tw #school hates disabled kids #special ed class #rant #chronic pain rant #school rant #ambulatory wheelchair user #fulltime cane user #cane user #i wish i knew what my conditions are so teachers actually listen t9 me #i havent gone back to school since

[radiyostatic]

the "im so sleepy" jokes that have gotten popular lately kinda piss me off as someone who is chronically exhausted tbh because yeah you might be a little tired but every single day i feel like im on the verge of passing out just all day. and naps don't make it better and sleeping at night doesn't make it better the only thing that SOMETIMES makes it better is depriving myself of sleep and that's really hard to do when you're almost nodding off half the time

#rant post #personal rant #chronic illness #chronic pain #chronic fatigue #chronic exhaustion #actually disabled #disability rant

[2outta3aintbad]

Shoutout to anyone whose disability is invisible and/or never taken seriously.

Shoutout to anyone who feels Too Disabled for general society but Not Disabled Enough to take up space in the community

Shoutout to anyone whose validity is often challenged when they enter "safe spaces" bc they don't meet society's expectations of disability

I'm sorry and hang in there. Your experiences are valid and your disability is real.

#disability discrimination #invisible disability #developmental disabilities #neurological disability #chonic illness #chronic pain #chronic injury #pots #chronic fatigue #untreated mental illness #disability representation #disability support #disability rant #respect disabled people or die slowly

[yikes-ajax]

You know what? I hate how most people think I'm 100% dependant on my mobility aids. Sure I hobble around with my cane and scuttle on my crutches, but I'm not helpless. They're so surprised when they find out I don't use them at home, or that they can hurt as bad as the disability itself, or that my dependence on them is a fluid thing and changes day by day. We have this idea of how disabled people should be— bound to their aids, miserable, defenseless. These ideas only helped me reject the idea of something wrong with me longer, because I didn't look like those people. Most of the time now, I use my aids when I don't need them just because I feel like I have to look "disabled enough" for people. We've built expectations for disabilities, which is funny, cause you couldn't have picked a more unpredictable thing.

I don't expect everyone to be educated, there are so much more pressing things to worry about, but when you have a friend or family member that's disabled, the least you can do is glance at a few resources online or ask them about it. I'm just so sick of family treating this like a big deal, or nurses holding on to me like a toddler still learning to walk when I need to get on a scale, or co-workers treating my cane laying around like a reverent item i will strike them down for disgracing. It's a piece of shitty metal y'all. I don't have a sliver of trust for that thing. Complaining about how cheaply made a lot of aids are to be priced expensive is a whole other post.

I'm just saying, if there was an immediate danger, you won't see me struggling to get away. I'll have already thrown my cane at them and ran. Yes, I have a disability, but I am not weak. You think these beefy arms are for show? You think this hunk of metal I lug around is soft? You think I made it to the end of the day fighting tooth and nail just to sit down and die? I'm fucking feral, fight me.

#dislocated my leg last night again after months #so is this a bad time to say i managed to sit crisscross but now im stuck this way because im afraid my leg is gonna pop out again? #i dont know how to move 😭😭😭 #actually disabled #cane user #vent #disabled vent #disability vent #disability visibility #hypermobility #disabled problems #disabled people #disabled representation #disabled things #disabled tumblr #disabled life #disabled community #disability rant #disability tumblr #disability things #disability issues #disability problems #disability awareness #disability life #disability community #disabled #disability #disabilities #mobility aid #mobility aid user

[anonymouslydisabled]

weird 2am disability take?

So whenever a disabled or chronically ill person becomes unable to do something simple or unable to do it without great difficulty (such as showering or cooking) or even people who were born with their disabilities and have never been able to do those things the conversation is always "oh my gosh as non-disabled people we take so many things for granted" and maybe it's just me being autistic and overly literal but I really don't feel like that's taking something for granted?

Like, someone is non-disabled, a task, let's say showering. is easy for them. They never really give too much thought into showering because it's not hard for them. That seems proportionate to me? Obviously they should be aware that showering isn't easy for everyone and shouldn't be an asshole if someone showers infrequently due to disability or mental illness. But I don't think it's something they "take for granted".

If abled people take anything "for granted" it's that doctors listen to them, that they only have to see said doctors once a year or so, that they don't have to risk a seizure or migraine going to a movie theater with their friends, that they don't get stares at the grocery store, that they don't have to go around a building and enter past the trash cans when everybody else can use the main entrance.

I don't know this is a random thought. I just started thinking about that saying that so often gets tossed around when disabled people talk about the things they can't do or struggle with, abled people view it quite unproductively? Like yeah showers are a common struggle for disabled people so instead of like practicing gratitude every time they take a shower I think abled people should think more about making shower chairs more accessible and being less judgemental when disabled people struggle to shower.

I feel like it's really common for abled people when hearing the lives of disabled folks to say "mmmm yeah that would suck" instead of "wow that's hard, how could we improve the safety and/or quality of life of disabled people?", although individual people cannot do much it's oftentimes the people who know disabled and mentally ill folks struggle to shower who still choose to make fun of people with poor hygiene, even their own friends or family.

I could've used a better example, it has the same energy as an abled person calling a disabled person an "inspiration" for running errands or having a job, they say variations of "I acknowledge that's hard and I wouldn't know what to do in your shoes" instead of "I acknowledge that's hard and I actually give a shit about it and am going to spend maybe 5 minutes of my life thinking about how society could better accommodate disabled people".

Anyways thank you for attending my 2am rant about something that doesn't really matter but maybe shines a bit of light onto how non-disabled people treat disability issues.

#mental illness #neurodiversity #chronic pain #chronic illness #chronic fatigue #disability rant #disability #actually disabled #spoonie #autism

[im-a-freaking-joy]

Me, dealing with multiple flareups from my sundry and plaguing health issues: I should take care of myself! Im going to rest until I feel better, my teachers are all understanding and most of them dont have penalties for late work, i just have to get it in before the year ends!

The year ending in a month: 🫣

The stomach flu finding my weakass immune system: 😀

My ADHD: 😏

Me: Oh no! My class ends in 4 days and I havent done enough work in it yet to get the bare minimum to pass! I NEED to do my homework soon! Why Am I so Lazy?

#i saw ADHD: and immediatley went #haha they call it that because adh D: and D: me too #im a little loquacious leaves rn because woohoo less pain! #if you could not devise that from the nature of the post #and the fact that o used fucgkin emojis #why emojis #i couldnt tell ya doll #i couldnt say #anyway disability is rough #and school odf rougjh #ajd om descenting to caveman #i dont eanna do homewrogk #pots syndrome #potsie #pots #spoonie #chronic pain problems #autoimmune #neurological disability #fibromyalgia #actually disabled #physically disabled #disability rant #im going to start tagging my disability posts with the tag #check out dis ability *falls over like an astonished and startled goat* #which im probably going to shorten to *startled goat* for funny and for shortening #but thats the origin of the tag *startled goat* on my blog

[disabledbutchblues]

it fucked me up a little bit that the only thing that people seem/seemed to find worthy about me is also the thing that disables me the most. my brain.

as a kid i was lucky to not be fully dehumanized, unlike some other disabled people (especially those with high support needs and/or intellectual disabilities), because my "intelligence"/intellectual ability was recognized and allowed people to still see me as somewhat worthy despite my (undiagnosed) disability and despite all the ways i was very annoying and weird to them. they didn’t exactly see me as human and they only saw me as a potential for something, but they still saw me as a person, i think. someone to stare at and mock whenever i displayed symptoms, someone whose emotions did not matter that much, someone to yell at when i did weird things or cried, but still someone.

my brain could potentially get good grades, could potentially produce good ideas, which meant i could be useful. i taught myself i was worthy only if i was intelligent. i had no emotional abilities, no relationship abilities, no physical abilities,… i just had my brain, that could potentially be something good. good grades, good student. read a lot of books and use clever words. am very lucky i was able to have that, i recognize the privilege. but suddenly, two weeks into high school, my brain started to. fail me. couldn’t do things i used to be able to do. couldn’t do "basic" things. couldn’t understand "easy" stuff. everything wrong, was all stuck. reading books was hard, understanding anything at school was impossible.

i just stopped functioning. i was diagnosed with multiple mental illnesses, then with adhd and, the worst but also the one that explained everything for me, autism. had been low support needs my whole childhood, was suddenly experiencing terrible executive dysfunction/autistic catatonia. i realized the one thing that was really wrong with me, what i had always been searching for, trying to understand why i wasn’t normal, why i couldn’t be normal, was my brain. my fucking brain isn’t like a "normal human brain." i’m disabled because of my brain (and maybe physical stuff but. not the point here).

i felt so betrayed.

i still feel so betrayed. the only moments i feel worthy as a person, the only moments i see myself as deserving of something, is when i do something clever. when i get a good grade on a test or when i analyse a book or when i learn about something. i hate myself unless i can use my brain for something deemed intelligent or useful by society.

because my body is weak and often in pain, i have no empathy, i can’t form relationships, i’m not good with coordination and crafts, i just have my brain but fuck it, of course said brain is also the source of most of my problems. i can’t do all the other things because of my brain. i hate it so much. it makes me hate myself.

i’m working on the internalized ableism. i really am. it’s also so weird because i never apply my logic to others. other humans are worthy no matter what they produce or how well they can learn/think/do things. they’re inherently deserving of rights.

but me ? i was told so many times that i was all wrong "but at least i could be clever." at least if i worked really hard i could be gifted ! i could be good ! i could maybe even be enough ! (i never was.) and i burned myself out trying to do this when of course i couldn’t because i was never gifted and my brain was never especially intelligent at all.

i just thought differently than other people, and i am lucky that for me, in some situations, it was sometimes useful. it made some things easier to learn (and others really damn hard).

it’s like i had the same intellectual abilities my whole life : as a kid they seemed high for my age, and now they seem kinda low, or at least weird. as a child i was told i was "mature" (except when i cried or showed inappropriate emotions or couldn’t tolerate normal things), now i am told i am childish and dumb and dependent and a burden and that it’s really annoying for everyone that i am so incompetent.

it’s like i didn’t grow but now life demands so much of me that i don’t even know how to do things i used to be able to do anymore. it’s like everything is wrong with me and i don’t know what i’m supposed to do with myself. i hate it. i have it so much better compared to some people and i know it but. i still hate this. i don’t know how to live

(am ok with advices or people relating or adding experiences or anything really)

#tw vent #disability #autism #actually autistic #autistic #disabled #support needs #disability rant #disability vent #i hate being disabled #i want to disappear #i want to cry #i just want to be intelligent #i just want to be worthy again #and to be enough #and to be normal #I WANT TO LIVE NORMALLY #internalized ableism #disability community #disabled tumblr #autistic catatonia #executive dysfunction

[chronicsymptomsyndrome]

Extended rant about being poor and disabled under the cut, not really worth reading I just needed to get it out.

Hope everyone’s having a decent day

Listen I’m disabled unemployable massively in debt and have exactly $0 in liquid funds and no sizable assets. Unless you count physical assets. Like I could sell my body I guess. Ugh. Anyway throwback to that one time like an hour ago when I at least had a iPad to use. It was from 2013 so I knew this day would come. Can’t believe it lasted this long. And I know I should be extremely grateful to even have a smartphone, but I cannot use my phone as a computer the way most people do. I cannot hold onto my phone that long. I can’t look at such a tiny screen that long. I can’t crane my neck down for that long. I can hold it up level to my eyes but I can’t hold my arm up that long either. It’s not practical or sustainable. Plus my smart phone won’t last forever. Then what will I do? Without access to the internet? Yeah yeah touch grass nobody had internet for millennia blah blah blah okay but now we do. Now it’s a basic necessity. You need internet to do pretty much anything adults need to do nowadays in order to be an active part of society. I agree it’s fucked up but it’s real. I cannot get to a library. I don’t have friends in walking distance (or any distance for that matter) I have no access to using the internet for more than a couple minutes at a time. Im writing this post in segments over the course of a whole day. I keep coming back to it because I can’t think about anything else. I legitimately don’t know how to remedy this situation.

Not that this is a remedy but I want to inflict suffering onto anyone that’s ever said money only causes problems or doesn’t buy happiness or the best things in life are free or any of that classist bullshit. Two hundred dollars is pocket change to so many people but a little refurbished tablet would change my life right now. I hope every billionaire lives long but suffers endlessly and unfathomably until they die.

Also I hope my dad and his wife are really enjoying their fully refurbished three story three bedroom two bathroom home complete with a sunroom a heated deck/screen porch (yes different from the sunroom) heated floors in every room a garage big enough for their two brand new cars a little Vespa & a whole workshop plus a cute little stone patio with a fucking water feature pond fountain thing that they don’t even see that much what with their practically monthly elaborate getaways and international vacations every year. Fuck I hope they are really fucking enjoying themselves. Meanwhile I have to decide if I want to cut back on food and medicine for a while to save up for a device I can access the internet on.

Anyway. Ignore this I’m just really fucking tired, sooooooo unbelievably fucking tired, of being poor and disabled. Big fucking deal I know I’m so far from the only one. I know I still have so much that some people don’t have. And I’m grateful. But…fucking hell. Poor and healthy would be fine. Poor and disabled but still employable would be fine. Disabled but financially stable would be fine. Disabled with adequate support systems would be fine. My piece of shit grandfather finally fucking off and dying and leaving me something to live on would be cool. I’d kill for any of these. But poor and disabled just feels like someone is beating the fuck out of me and every few minutes they stop for just long enough to help me up and let ms pull myself together and there’s a momentary glimmer of hope until they go right back to beating the fuck out of me. I feel like eventually I won’t be able to get up or pull myself together anymore. I don’t fucking know.

Anyway at least I have a place to stay!! At least I have something to eat!! I can make tea if I want!! My eyesight is going slowly enough that my glasses are still usable!! The fact that I even have glasses in the first place!! The fact that I have any clean water at all, even if it only stays hot for three minutes. I can still take a shower. I have books to read. There a lot of ways in which my body and mind have not yet let me down. Honestly how dare I complain about anything I guess??? I don’t fucking know how I’m supposed to feel

#rants & reflections #delete later #disability vent #disability rant #executive dysfunction #audhd problems #physical disability #neurological disability #autistic borderline #bpd mood #disability culture

[nondivisable]

IM SO MAD AT THE SHAME SOCIETY PLACES ON DYNAMIC DISABILITIES

yes, I was walking unaided yesterday; yes, I am using forearm crutches today

yes, I was using forearm crutches but left them behind to go to the bathroom yesterday; yes, I need to use them even to walk two steps today

yes, I went up the stairs unaided yesterday; yes, I needed my crutches to go up to the stairs today; yes, tomorrow I might need to scooch upstairs on my ass because I won't be able to walk them

yes, I walked unaided to the car to get my crutches out of the car in the morning; yes, I will use them to go on a walk in the afternoon

DISABILITY CAN BE DYNAMIC, MOST PEOPLE ARENT ON A FIXED POINT OF SUPPORT NEEDS AND MOBILITY, WE'LL HAVE GOOD AND BAD DAYS AND I DONT NEED TO EXPLAIN MYSELF TO YOU

#cripple punk #cripplepunk #spoonie #chronically ill #chronic pain #crutch user #disability activism #ableism #chronic illness #dynamic disability #disability rant

[treasure-goblin]

Ok, but what if I don't want to come to terms with the fact that my disabilities make the growth of my skills more difficult? What if I want to pretend if I just push through it that I can make it and pretend to be normal, and that will make me happy instead of burning me out? What then?

#cal rambles #tre talks #disability rant #goblin vents #ish

[violet-phoenix-nebula]

The most infuriating thing about being accused of faking, is the implied accusation of sacrificing everything you love for attention or clout.

I used to go rock climbing, hiking, and sky diving. I looked forward to the day when I could go back to doing those things.

But now? The chances of me ever being physically capable of those things again are really slim.

I deal with a lot of joint pain, especially in my knees. Think these knees are ever jumping out of a plane again? Probably not.

I deal with muscle weakness on a level I couldn't have even comprehended a year ago. Think they're gonna allow me to go out hiking again, like I've always wanted? Not likely.

I deal with mind numbing fatigue and brain fog on a daily basis. If you're gonna be rock climbing, you need to be able to stay alert and well focused. That's out of the realm of possibility now.

And the fact that I haven't been able to be the mother my kids deserve? That's a whole other level of guilt and self hatred that deserves its own post.

I can't be a good, fun mother. I can't be a good wife. I can't do 95% of the things I loved to do. I may very well never be able to do them again. The only goddamn reason I'm bothering to stick it out is that I don't want to devastate the people who love me.

My entire life is crumbling around me. I feel like I'm not worth anyone's time or love. I'm convinced I'm a burden on my family. I can't enjoy anything I used to and realistically, I may never be able to again.

The only thing I have left to live for is the feelings of the people around me.

But sure, I'm faking for attention, or what the fuck else. Yup. That makes total sense.

#trigger warning #disability #rant post #disability rant #fibromyalgia #chronic disability #chronic illness #chronic pain #faker accusations #disabilities #fibro warrior #fibro #fibro problems #disability problems #angry rambling

[aguineapigcouldntdothis]

tbh the disability community wasnt the reason i rejoined tumblr (i did that bc i was having a breakdown and this seemed like the next logical step) but this is the ONLY online space in which I've felt accepted as a disabled person. in other places i never felt like ive fit the idealized criteria of what a disabled person should be but here i see support for all types of disabled ppl. and that makes me feel rlly good! it's nice to know that there's ppl out there recognizing all of us who dont fit the concept of what a disabled person "should" be. and ofc i <3 all disabled people no matter if they fit some bs concept or not.

#disability #disability rant #disability pride month #disability community #i hope i worded this well

[sirijanu-redux]

I've been having some pretty strong disability feelings lately.

I get why the push to discretize EDS was made and I honestly agree with it, especially in outlining the different genetic links as a part of the diagnostic criteria. It really had/has become a "problems disorder to stick people in when they have these general problems I guess", which medically makes it more difficult to treat than necessary. By laying out the boundaries for the thirteen types in 2017 each one becomes easier to treat (not to be confused with easy to treat!), and more consistent to describe. I agree with those choices.

I, personally, just wish I could've gone through the process just a little bit earlier. My diagnostic ~journey~ started in like 2012 when I couldn't push past my knees being stupid any longer, but I didn't get properly diagnosed and treated until I turned 18 and spent the next three years aggressively chasing specialists and advocating for myself. I got genetic testing in 2019, and don't have any of the known genetic markers. Everyone I've spoken to who knows about these things has done a double take at that, and asked if I'm *sure* I don't have classical or vascular. The geneticist herself looked at me and said if it were a couple of years earlier she'd just diagnose me with classical on the spot and send me back to cardio to test for vascular.

So whatever, I'm not in the genetic club that's being tracked at the moment, boo hoo just cope with everyone else in the HSD/hEDS bucket.

the reason I'm so frustrated is because this clearly runs in my family, my specific symptomology and presentation. aortic dissection has killed two of the last seven people to die in my blood family! that is ten times the average incidence! we don't age/have that eds baby face forever! the only reason I haven't had any of my freaky under-skin lumps analyzed is because both my mother and my grandmother have had theirs biopsied to hell and back and just get a shrug emoji! my little brother has the same joint problems I started presenting with and I can't help but hope both that his don't progress and that they do so I won't be the only moderate case we know of antemortem! I may be the only one of us living who has presented this severely but I've also been under enough stress to activate every epigenetic problem I've got! fuck!

this post brought to you by my family's selective breeding program

#heds #long post #disability rant #i am tired and i am tired of ehlers danlos syndrome specifically #and I wish I had the money and the connections to bring a vial of blood from all my living relatives and demand it sequenced and analyzed #for some validation #so I dont feel so fucking crazy for being so functional and disfunctional at once #aiyi. sometimes diversifying the gene pool for your progeny is a great plan and sometimes you invent cool new genetic disorders ig