#ehlers danlos zebra

[chronically-evie]

my mom keeps trying to get me to go to the ER when im having a flare up and i have no idea what to tell her.

because ive BEEN to the ER before. you wanna know what they did? while i was sweating, shaking, and sobbing, curled in a ball of pain?

they asked me if i was on my period. when i told them no, they asked me if i was pregnant.

when i told them no, because i wasn't sexually active, they forcibly tested me anyways, and then when it came back negative said, "well maybe you should just take a few deep breaths", gave me liquid ibuprofen, and sent me home.

disabled people, in this particular situation disabled afabs, are never fucking listened to.

the ER staff literally LAUGHED at me multiple times. they pointed at me when i was having one of the worst episodes of my life and snickered.

so no, i do not want to go to the fucking ER. my heating pad, ice packs, and nausea meds are going to help me more than anything a hospital could do.

[whoopsie-doodle]

This is your reminder to clean your emotional support water bottle.

Check the o rings for mold.

[thelupuslady]

[theselfishmachiness]

why do people assume my symptoms will just go away when my tests come back negative? like you assuming my symptoms go away when tests comes back kinda makes me believe you never believed i had symptoms at all. im not a hypochondriac, im in fucking pain.

[bold-tachycardic-baby]

Why can’t people understand my anger at medical professionals? I logically know it’s because they’re able bodied and have likely never had a bad experience. But why can’t they use a bit of compassion to see the problems with healthcare? Let me be angry at being treated poorly. Let me be angry about the state of our healthcare system. Let me be angry.

[spookietrex]

I am valid even when my small victory is that I took my meds that day.

[g0refield]

a thing with being chronically ill is i don’t know what’s a symptom anymore. i learned last year it’s not normal to pass out from standing still, i learned recently it’s not normal to get dizzy from wearing a beanie. i don’t know what heart palpitations feel like because i have them all the time. i don’t notice my own pain tics. i haven’t felt not tired since i was a child. i have no idea what it’s like to be 100% able bodied and neurotypical etc because i’ve never tried, so i have nothing to compare with.

[kaonarvna]

Every now and again, I remember that my disability (EDS) isn't invisible, actually. People are just uncomfortable when they can see it. People don't want to see it. People like to ignore it. Other people just stare at it, and don't even look at me. All they see is a pile of bones and fascia and something to pity.

I've worn a shoulder brace the past week, because it subluxed horribly a week or so ago. Still healing. Visible.

I always have compression sleeves on my arms, full coverage. Bicep to wrist. Visible.

I have soft braces and compression kit for every joint imaginable. Visible.

I'm covered in KT tape. I've worn it on my goddamn face after a jaw sublux, for that little extra support and proprioception help. Tape. On the face. Very visible.

The people I've worked with for years are used to it by now, the good ones, at least. They don't remark when I take a minute to stretch. They know I'll say something if I'm not okay. They know I'm in a constant state of variable dysfunction. They've seen enough, they're used to it.

But then there's people who aren't used to it. People who see me stretch on the ground, watch in discomfort, then they ask someone else if I'm okay. I can hear them quietly mutter it to other staff. I hear them go, "oh, he does that". I can see their discomfort with me (just existing as I need to exist). I can see the discomfort in these new people who aren't accustomed to bodies with slightly different needs, and it's a visceral reminder of being "other". I wonder, how terrible and scary and different I must be, for them to not even have the fortitude to ask me themselves.

And then there are the new people who see it and ask too many questions. The ones who go "but you're so young!" as though my connective tissue has a concept of social expectations for people under (arbitrary age). They go "but you look great!" as though I'm not covered in bruises and held together by tape (nevermind the implication that the disabled must look "bad"). They go "but you never call in!" as though I'm not often two seconds away from doing so, before the fear of losing my job sets in.

...and these are the ones who seem to wish not to see it the most. The ones who ask questions like I should be on display, and as soon as the conversation ends, so does my disability. They'll ask the same questions the next time, and the next time, and the next. It always ends with statements of pity, or something pity-adjacent. If I'm "lucky", they might even make an inappropriate comment about how I shouldn't be working, or sex must be "interesting", or act like I'm some eldritch horror that shouldn't exist.

And I'm reminded of the training I was once made to sit though. A ninety minute training, where you sit and watch the PowerPoint for ninety minutes in a too-small plastic chair, while someone reads the PowerPoint. The presenter started with a cute little "haha I know it's long, feel free to get up and walk around, or stretch".

I did.

I got up, walked myself to the side well out of the way of the tight chair lines, and laid down to stretch (a good spinal twist, loosen things up).

And she stopped the presentation.

She asked if there were any first-aiders present.

She was going to keep going on and on, until I heard someone say, "oh, he's fine, he does that." and a few "that's just (name), he does that". She started apologising profusely, waffling about how she thought there must have been a medical emergency, how people don't usually get up. She seemed baffled by the mere concept that someone would actually need to get up, and couldn't sit for ages. Her statement was entirely performative and insincere.

Today, after the day was effectively done, I laid down on the clean, carpeted floor in my classroom to just...be horizontal for a moment. Find some way, any way, to get my lower back to move and function and not feel like it was being clawed apart from the inside. Relieve myself a little, so I could finish the day without abject misery. And this very-new member of staff sat on the other side of the room, presumably watching me. When I got up, she asked very quietly, "Is something wrong with you?" and all I had the energy to say was "I'm fine". I'm tired of explaining my body. I'm tired of explaining my needs. I'm tired of justifying taking care of myself.

Someone recently told me "You're very brave. I think I'd rather die than live like you."

I didn't respond. I didn't have the energy to break down that she'd effectively told me I should die. I didn't have the energy to tell her that it's not bravery to live "like this".

It's my only option.

I know nothing else.

And I'm just tired. And hurting.

I'm grateful for the few good ones, the ones that are used to it. The people who have stopped asking me if I'm okay when I stretch, or need a little break, or get out the tape and scissors.

They know I'm not okay. That's why I'm on the ground. That's why I'm checking my range of motion, or feeling a joint, or holding pressure on a digit that's come undone. I'm not okay, and I'm trying not to get even worse.

I'm not okay, actually. I'm never okay, and that's fine. I'll never be your version of "okay", and that's fine. I've no choice. Thank you for knowing that I'm not okay, but that that's normal, and that if something was seriously, horribly wrong, I'd do something. Thank you, for just going about your business and talking to me as normal when I'm taking care of myself, instead of sprinkling eggshells on the ground for your own personal crunching.

I'm just tired. I'm visibly disabled if you look for ten goddamn seconds. I'm a person if you look for twenty. I'm a fetish if you just keep staring and staring and asking about my body like you're entitled to my flesh. I just want to sleep for more than two hours without my body waking itself up to remind me it hurts. I'm so tired.

[spookysalem13]

Just a fellow spoonie 🥄 here to share a relatable hilarious 😄 video.

Being chronically ill, you have to learn to find the humor in your diseases. For me, it's a major way I get by day to day.

This made me smile, I hope it can make you smile as well.

[thecovenhouseco]

Slowly realizing that you may not be able to work anymore if you actually want to treat some of your disabilities feels like you’re being crushed like a hydraulic press. I’ve worked so hard, and I’m afraid that it was for nothing. So if you’re struggling with the same thing, I’m proud of you for all that you’ve done.

[rainbowchihuahuabunny]

I hate being in this disability grey space. I'm well enough to work most of the time but that means I can't do anything else in my life. Disabled enough not to be able to keep up with others my age.

I'm constantly in pain and exhausted but well enough to have to push through to keep a job so I can afford to live and afford pain medicine and braces. I just subluxed my hip and am stuck in my wheelchair but I know I can't use my wheelchair at work cause I need my hands free. So, here I sit with a heating pad on my hip, sobbing and begging for the pain meds to help.

Just wish I were either fully abled or disabled enough to get help. Instead I'm stuck here. In the disabled grey space

[chronicallycouchbound]

Rating names/terms for Ehlers Danlos Syndrome:

Ehlers-Danlos Syndrome: 10/10 Lawful neutral, it’s the official terminology, lets you know what’s up

EDS (in all caps): 9/10 Sometimes confused with other unrelated conditions and acronyms but usually works

EDs (‘S’ is lowercase): 2/10 Usually refers to erectile dysfunction or eating disorders, which causes a lot of confusion.

Ehlers Danlos: 8/10. Good shorthand while still knowing what’s going on.

Earers Daniel’s Syndrome: 1/10. I have only heard this once, from an ER doctor. He said it to me as he turned away from his screen (which was pulled up to the Web MD page for EDS) and proceeded to mansplain my condition to me inaccurately. At least he tried.

“Eyers Dan—“ *waves hand around*: -5/10 I’ve heard this one a lot from medical professionals. I just know I’m about to be malpracticed and am already planning the quickest way out of the situation.

Zebras: 6/10 I like the imagery, I like mascots, I like the story (when doctors are in med school they’re told “if you hear hoofbeats, think horses, not zebras” but them zebras are missed) however, I have two criticisms: a) more rare conditions are out there, and zebras technically refers to any rare diseases, not just EDS b) I feel sad when I think about how it basically calls EDS the “I was medically malpracticed disease”

EDSers: 8/10 a cute lil shorthand for “people with EDS”. Easier to explain than the zebras thing

hEDS/vEDS/cEDS/including subtypes: 7/10 I like the idea of being able to know what your subtype is and find people in your sub community, HOWEVER my only concern is that it can feel (and used for) invalidating people without a genetically confirmed subtype because of inaccessibility. I haven’t had gene testing because I can’t afford it— but I have clinically diagnosed EDS, which has been confirmed at multiple hospitals by multiple specialists. I score a 9/9 on the Brighton, meet all major criteria, and meet almost every other minor criteria for EDS on top of that. But I don’t know my subtype yet. I don’t hate/dislike people who use this term and I don’t discourage it, but I do encourage mindfulness about genetic testing accessibility and privilege of access.

Bendy disease: 10/10 a silly goofy joke I say with friends “I cannot walk up stairs on account of my loosey goosey bendy disease” which is always funny to me. Even with my serious things like “my life threatening cardiac conditions are rapidly progressing” you add “on account of my bendy disease” and bam theres my coping skill.

Ehlers: 3/10 a step in the right direction, but it sounds like “yellers” and dismisses half of the team that described the condition

“Double jointed”: 1/10 I was told my whole life until I was 18 that I was just “double jointed” for starters, it’s medically inaccurate. You’re hyper extending, subluxing, or even dislocating joints whenever you’re “double jointed” in a joint. There is not two joints there (unless you’ve had x rays and for some reason genuinely do have two joints in that spot). I honestly hate this term and it’s incredibly dismissive of the pain that happens with EDS while also making it seem like a super power that we’re encouraged to do

Contortionist: 1/10 [NOTE!!! some contortionists DO NOT have EDS and can just bend like that. Some have benign joint hypermobility. But many contortionists do have EDS.] In the context of people with EDS, I hate this term. It’s often the first thing people jump to when I explain my condition. They see my crippled ass in my wheelchair/powerchair or limping around with my cane/crutches/rollator, usually in multiple braces/supports (and thats just external noticeable-to-everyone things, let alone if you hear any aspects of my daily life) and their first thought is: “wow!! So you can entertain me like it’s a freak show!” And not “holy shit dozens of dislocations per day and countless subluxations per day must be excruciating”. I did contortions when I was younger to get praise and due to peer pressure. Fuck that noise I will not be your ugly law era freak show creepy cripple p0rn. Fuck everything to do with that actually.

[thelupuslady]

I wouldn't mind this actually haha. Who is down?!

[chaos-and-ink]

EDS/POTS/Scoliosis Stickers

All of these will become available on my shop in June. You can follow my page on Ko-Fi to get an email update when they're for sale so you don't miss it :)

Tomorrow is the last day of my class and this is my final project. Chronically ill stickers. I definitely plan to make more but this is what I have so far. I can't wait to sell these in the Summer and if anyone has suggestions for what kind of stickers I should make next, absolutely let me know! I love getting sticker ideas from others.

Reblog to share them around :) I'd really appreciate it.

Here is the link to my shop : Chaos And Ink

Image Descriptions are from left to right

[ID: A skeletal leg with the knee hyperextended and a rainbow behind it. The text reads 'Nothing about me is straight' / A crooked vertebrae column with a rainbow behind it. The text reads 'Nothing about me is straight' / A zebra pattern awareness ribbon with the initials 'EDS' on the right side / A skeletal arm with a hyperextended elbow and a rainbow behind it. The text reads 'Nothing about me is straight' / A blue awareness ribbon with the initials 'POTS' on the right side / A black leg with a hyperextended knee and a decorative vine tattoo on the thigh. The text reads 'Clinically too bendy' / A white wrist and hand with the thumb pressing against the forearm. The hand wears a ring and bracelet and has a tattoo that reads 'Enough'. The text reads 'clinically too bendy' / A latino arm with a hyperextended elbow and a bracelet and watch. The text reads 'clinically too bendy' End ID]

[bold-tachycardic-baby]

I’m so exhausted because my disability is causing me to lose sleep from my pain. I need to rest because my disability makes things harder making me tired faster, but I can’t sleep because of my disability getting in the way. What poetic irony we have here

[melodymorningdew]

Ableist language content warning:

Just a PSA: Many people believe they aren't ableist but as soon as someone's disability inconveniences them in the slightest, they're immediately up in arms about how horrible this person is for being disabled.

So tired of hearing "you have to help yourself"

"Have you tried [insert completely unhelpful tip]"

"You can't expect the world to bend to your will." (When asking for accommodations)

"You don't LOOK disabled."

"Well you did ___ yesterday why can't you do it today?"

"You need to stop making excuses."

"You complain too much."

"You can do anything if you put your mind to it."

"You just have to force yourself to work you have no choice."

"Just go home if you're going to act like that [my legs collapsing beneath me/fainting/saying I'm having a panic attack]" (same people who tell me I just need to push through)

"Oh that person is being so rude" (when they are overwhelmed and unable to carry on a normal masked conversation bc they are overwhelmed)

"ADHD isn't an excuse to be late or forget things you can set alarms and have planners"

I and many others are rightfully pissed off at being dismissed and condescended to and belittled and stomped into the dirt EVERY OTHER DAY. (Not exaggerating.)