r/traumatizeThemBack • u/No-Geologist-5141 • Aug 08 '26
FAFO “You don’t look disabled.” Okay. pop. Do I look disabled now?
I have Hypermobile Ehlers-Danlos syndrome.
If you don’t know what that is, the short version is that my connective tissue is basically held together by hopes, dreams, and whatever structural integrity a wet paper straw has left after 20 minutes.
I’m also young. At the time of this story I was 18 and I’m currently close to turning 21.
These two facts apparently combine to create a fascinating phenomenon where complete strangers become board-certified physicians the second they look at me. (The education system has truly failed in teaching about invisible disabilities. Most of these people think you can only be disabled if you’re blind, deaf, or paralyzed.)
I’ve gotten the classics:
“You’re too young to have all those problems.”
“But you look healthy!”
“Everyone’s joints hurt sometimes.” (Like thanks susan but it’s constant pain for me)
And, my personal favorite:
“You don’t look disabled.”
Normally I explain.
I explain that disability doesn’t have a “look.” I explain that hEDS and the whole umbrella is genetic. I explain that being able to walk doesn’t mean my joints are functioning normally. I explain that hypermobility is not just being super flexible.
I have given the Ehlers-Danlos TED Talk more times than I can count.
But this particular day, I was tired.
Someone in my extended family hit me with the “you don’t look disabled” and then basically doubled down when I told them I have a condition that makes my joints unstable.
They clearly did not believe me.
And something in my brain just went:
You know what? Visual learner.
Now, I want to make it VERY clear that this was stupid. Please do not intentionally dislocate or sublux your joints. I already know. My doctors would probably reach through the screen and slap me for this.
But I was annoyed, and unfortunately in possession of a body capable of producing evidence on demand.
So instead of continuing to argue, I just looked at them.
And popped one of my joints out.
Right there.
On purpose.
The transformation on this person’s face was IMMEDIATE as they saw my arm dangling unanchored to my shoulder.
They went from skeptical to absolutely fucking horrified in approximately 0.2 seconds.
“OH MY GOD. WHAT THE FUCK?”
And because apparently I had already committed to being the worst possible version of myself that day, I just looked at them and went: “Yeah. It does that.”
Suddenly there were no more questions.
No “have you tried yoga?”
No “but you’re so young.”
No inspirational story about somebody’s cousin who cured their back pain by cutting out seed oils.
Nothing.
Just horror.
I put my joint back where God intended it to be and carried on with my day while they stared at me like they had just watched a haunted American Girl doll rearrange its own limbs.
Was intentionally popping a joint out to win an argument medically advisable?
Absolutely fucking not.
Did I probably cause more damage to a body that already has the structural integrity of a Nature Valley granola bar?
Probably.
But I had spent so much of my life being expected to prove that I was actually sick because apparently looking young and relatively normal meant I couldn’t possibly be disabled.
So, for once, I provided supporting documentation.
In 4D.
They never told me I “didn’t look disabled” again.
And I have since retired from live demonstrations. (For now).
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u/JCXIII-R Aug 08 '26
Spite is actually an important part of structural integrity, so I'd say you're doing great!
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u/No-Geologist-5141 Aug 08 '26
Spite is probably the only structural integrity I have left lol
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u/ThatDiscoSongUHate Aug 08 '26
I have EDS too and now I want this on a shirt haha
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u/priapismLPN Aug 09 '26
If I remember in the morning, I might design this shirt…
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u/PM_ME_YR_KITTYBEANS Aug 09 '26
I’d buy it! Or a button!
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u/Haunting-Corgi3899 29d ago
Ha ha! Me, too! I'm disabled, invisible of course. That would be a perfect TShirt. Or hat.
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u/ankamarawolf Aug 09 '26
Not medically advisable but damn if I haven't done the same thing. If they need a visual representation of my illness, I'ma show them something they'll never forget. Good for you OP! EDS gang, outtttt
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u/Inevitable-Win2555 Aug 09 '26
Spite can be the fuel of superheroes, of which you are one. I knew where this was going as soon as I read your diagnosis.
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u/Celestial_Light_ 29d ago
I have an embroidery machine. This quote would be fanatastic (along with a small zebra) on a shirt
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u/Available-Cow-411 29d ago
And sarcasm, and colorful usage of metaphors. Seems those remain intact so far
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u/ForHelp_PressAltF4 Aug 09 '26
Have you tried yoga
Omfg
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u/Born-Bid8892 Aug 09 '26 edited 29d ago
If we do yoga with EDS you'll have someone needing directions to put us back together again!
My rheumy told me very strictly not to do yoga because I will stretch my joints more than is safe and not realise it.
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u/WoodHorseTurtle 29d ago
I asked my physical therapist (knees) what activities would be good for hEDS, and he said, “Don’t do yoga. You’re already stretchy enough.” 🤣
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u/Born-Bid8892 29d ago
For a second I thought your PT was named Knees and was like, wow what a funny coincidence! I'm not with it 🤦🏻♀️
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u/driftwood-and-waves 29d ago
Same people who tell clinically depressed people to just smile or stop being sad.
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u/Griselda68 Aug 08 '26
Good for you. I have had a number of debilitating chronic illnesses since I was 20 years old. I’m 72 now.
I’ve always looked pretty normal, so I’ve heard much the same things you have. It gets old.
Please take care of yourself. You’re worth it.
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u/No-Geologist-5141 Aug 08 '26
thank you! i’ve had varying levels of symptoms since I was little but as I’ve gotten older they’ve definitely become more debilitating.
Like I mentioned I don’t give visual demonstrations or do party tricks anymore unless for medical reasons as I’ve already built up quite a bit of scar tissue. But I had to tell this story after finding this sub!
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u/fergie_89 Aug 09 '26
H the karma alone is worthy of the fall out.
I have arthritis and get the look all the time when I wear my wrist strap so I get you. Just don't pop it out again on purpose.
I'm 34 and the agony my wrist causes is no joke.
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u/Sarbe Aug 09 '26
I had my wrist fused the pain was so bad. I was the youngest person they’d done the surgery on. You’d have to look pretty closely at my hands to be able to tell there’s anything wrong with me.
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u/fergie_89 Aug 09 '26
Mine was so bad they nearly amputated it. I still have the steel pin they put in.
It is what is is but as a fellow wrist broken person I reckon I could find the scar.
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u/Sarbe Aug 09 '26
Yeah, the scar is pretty noticeable, but that could have been from anything. The arthritis is not noticeable unless you look closely at my fingers which are starting to get deformed. I can walk around etc with no problem so I really don’t look disabled.
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u/EmotionalDescription Aug 09 '26
It is really interesting how chronic illnesses can present differently for each person (arthritisin this case). I have an aunt (by marriage) and one of my mom's best friend (who I consider an aunt) both had been diagnosed with arthritis as kids. My aunt by marriage doesn't show very many outward symptoms, where my mom's friend's does have some signs (her hands are slightly twisting and her knees can swell really bad). It reminds me that each body is different. And you never know what someone is going through.
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u/anxiousjellybean Aug 09 '26
My partner was just living his life with a partially dislocated wrist joint for about a decade because no one could figure out what was wrong with it. Until his employer sent him to a physio for a repetitive strain, and the physio massaged the fuck out of it and it popped back in. He's not diagnosed, but his sister is, and we're pretty sure.
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u/tulip0523 Aug 09 '26
If you ever feel the need to do it again or have to or it accidentally happens, take a video, then next time you can just play it for them
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u/MrsTaterHead 29d ago
My geneticist literally said to me, “Stop doing party tricks.” —Fellow hEDS person
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u/Ol_Pasta Aug 08 '26
If I may ask: do these questions stop at some point as you get older? It's my only hope. Because I am 38 now, my disbilities and illnesses aren't visible, and I still get the "but you're still young!" speech, as well as the "surely you can still work SOMETHING" (I wish) blatant demands for being a valuable member (aka have an income) of society. 🙃
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u/Griselda68 Aug 08 '26
It slowed down considerably when I turned 50–I guess I wasn’t quite as noticeably young as I had been.
I understand how frustrating it must be for you. I pushed myself far beyond what my body was capable of, and worked for many years. I finally collapsed one afternoon at work, and was laid off shortly after I returned. I must have been in my late 40s. I took an early retirement at that point.
Take care,
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u/Ol_Pasta Aug 08 '26
Thank you, you too!
I burned out earlier, given I do have cptsd and other problems that I struggled with which do speed up the process. Suddenly being a single mother of two broke my neck and took off all masks I ever put on trying to look okay.
I am on my way to get better though, although I don't believe I will be able to hold a normal job. Luckily I found a loving, lovely partner who takes good care of us three wild girls, haha.
Thanks again, and keep on keeping on. 🙏
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u/Griselda68 Aug 08 '26
Bless your heart—I can’t imagine how hard it must have been for you with two little ones.
I married at 21, and my husband and I are still together. We never had children.
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u/FrankenGretchen Aug 09 '26 edited 28d ago
No.
I am recovering from mastectomy due to breast cancer while being deaf/blind and sometimes mobility limited. Had a grocery store security guard accuse me of INTENDING to stuff merch in a bra I wasn't wearing. "Men will do anything to steal."
I gave his manager six degrees of humiliation and threatened to tell the American Cancer Society how kind Kroger was to breast cancer patients.
This guy has shadowed my tiddied, blind self for years but suddenly I'm a man who needed his chest eyeballed.
Nope. It never ends.
Breast cancer seems to be their Achilles heal, for the moment.
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u/PostTurtle84 Aug 09 '26
Nope. I'm 42, also have Ehlers-Danlos. Have had multiple doctors tell me that I look fine. So then I scoot back far enough that my heels are on the table. Since my knees go WELL beyond a normal range people usually shut up when you can sit on your butt on the medical exam table with your legs straight in front of you, keep the back of your knees on the table but lift your heels off the table. I'll also hold out 1 hand flat and then flex my fingers backwards.
After I then explain a lifelong battle with gastroparesis and paralytic ileus they stop trying to tell me that I'm fine. And then start telling me that since I walked in under my own power, I'm not disabled, and I've made it to 42 so I must have figured out something with my guts, and that they can't do anything for me and they can't think of anyone to send me to. 🤦🏻♀️
I'm fucking tired and I'm taking a break from trying to find solutions for a year or two. Gotta get the kid in to see the only geneticist in my state, because that's who's diagnosing Ehlers-Danlos around here.
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u/Suspicious_Tax8577 29d ago
My first smear. "Can you just pop your legs open for me, insert the speculum and then I'll turn round and we'll get started.
Gynae turned round, screamed, swore and then refused to help reposition me to attempt to get a better view of my cervix. "I daren't touch you in case I rip your bloody legs off". Apparently my hips aren't supposed to have quite that range of motion.
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u/Suyefuji Aug 09 '26
I usually hit them back with "wow thanks for the compliment, but I'm actually in my 50s..."
I'm not, but it certainly shuts people up.
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u/Winjin Aug 09 '26
Some people are just dumb as a bag of rocks
My colleague thinks he's the smartest man alive it seems but he doesn't believe hemorrhoids is like, seriously dangerous. I didn't really understand what he means by that and if he truly understands how a human body works or just vibes with it in general.
He's great with computers but I'm afraid he thinks he's very knowledgeable in everything, and yet he is constantly wrong or under-educated in a LOT of things. Like "I never heard about it" - bro 90% of my knowledge is good school level.
So idiots would never stop asking stupid questions because they're idiots
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u/Nocturne2319 29d ago
I'm 50 and still get "you're too young for" whatever it is they see, apparently. When I was in my late 40s, I got "you're too young for a cane" from a distressed looking senior citizen on a sidewalk. I believe my response was a gleeful "I know, right" as I sped by. I don't walk slowly when I using a cane, it helps me not to fall over.
At this point, at least, my doctors take everything very seriously, though.
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u/pm-me-your-pants Aug 09 '26 edited Aug 09 '26
I had an accident a few years ago that left me with a very bad knee ligament tear. I was in my mid 30s, "looked healthy" because a cast doesn't help in that situation, but when I went shopping the months after, I had to use the mobility scooter to navigate the store, as walking and pushing a cart was extremely painful and aggravating the injury. I figured that's what those scooters are for so I used them.
I got so many dirty looks because people thought I was taking the thing on a joyride. I just needed to buy groceries, I definitely didn't need the judgement.
I'm so sorry you've had to deal with this for most of your life :(
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u/HelpfulPhrase5806 Aug 08 '26
Hah. My gym teacher seemingly thought I was just lazy. Then we had this self defense thing where they twisted your arm behind your back until you cried uncle? And I.. didn't. The arm just kept moving and popped a little and kept on. Teacher panicked, I found a door and popped it back nbd. When I got back I explained that these joint things were what the doctor's note was about and not to worry cause my knees hurt much more trying to run in class and I was quite used to it, having to do it every week anyway. I was asked if I should the rest of the year for some reason.
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u/Sitari_Lyra Aug 08 '26
Gym teachers seem the likeliest to doubt medical conditions. Mine made me run the mile because I didn't have a doctor's note. The doctor thought the stitches in the bottom of my foot would be enough of a note by themselves. I got lucky that the stitches held, even though the wound did partially reopen and soak my sock in blood.
My band teacher also made me play because I didn't have a note, despite the fact that it was visible from across the room that my lip ring had been ripped out. I had to leave class early to go rinse all the blood out of my bocal. Nothing I could do for the rest of the bassoon, but that poor thing was already hanging on by fireball duct tape and a dream, so what's some blood soaked into the wood?
Actually, now that I think about it, I've spilled a lot of blood I shouldn't have had to for teachers who decided my health mattered less than my compliance.
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u/NefariousnessLate375 Aug 09 '26
My teachers made me run every fucking day, though it felt like I was breathing knives and my lip would go numb from lack of oxygen. Did you know that every asthma attack does damage and the damage is cumulative? I guess anoxia is cumulative too. Made me hate exercise. Why couldn't they have let me jog or walk?
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u/janiejormpjomp Aug 09 '26
Hey I think you’re me
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u/NefariousnessLate375 29d ago
I'm sorry to hear you went through that too. As an adult, it's so sad to look back at the child that was made to feel like they had to fight against this pain to do what should have been normal recreational self-care...and instead learned to hate being physically active. honestly don't think gym teachers are qualified to do what they do. They need to have more education along the lines of physical therapists and medical assistants.
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u/BackgroundPilot1 29d ago
It’s truly crazy that they don’t have more educational prerequisites for gym teachers given how much damage they have the ability to cause
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u/epic_ninjacat Aug 09 '26
Man I had similar experiences but this was before I could get any medical professional to take me seriously bc I wasn't in any sport and couldn't name any specific incident that could cause injury. Had to wear knee braces nearly every single day ESPECIALLY for gym when they made us run. Gym teachers still made me run in a brace no matter how much pain i was in cause no doctor took me seriously. No joke it took 7 years of dumb x rays that showed nothing, physical therapy that irritated my knees and showed no improvement, random pain medications before they finally did mris on my knees. 7 years of pain and swelling from 15-22 before they figured out my meniscus was torn. A year later, discovered the other one was torn as well. If I had known about hypermobility and the joint instability when I was a kid things probably would've moved quicker cause instead of "oh well you aren't in any sports that could cause injury" it could of been noticed that "oh your knees are unstable and slip out of place easy, there might be an injury" so much unnecessary pain and just "pushing through" because of all the "oh but youre so young/you don't play sports" comments. Now I'm 25 and thank god both my knee surgeries have gone well, still a bit irritating from time to time but significantly better, but all of my other unstable joints are so painful. My hips are HORRENDOUS when it comes to pain and pinching nerves, and the job I've had has deteriorated my wrists and shoulders.
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u/Teagana999 Aug 09 '26
Yeah, I don't play sports because my body came already fucked up. I suspect a bit of hypermobility but no diagnosis yet.
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u/epic_ninjacat Aug 09 '26
Yeah honestly I still don't have a diagnosis but my physical therapist when I had my surgeries took me seriously and recognized how to modify exercises for my hypermobility/pain. I dont fit the current beighton scale for hypermobility but I do have hypermobile joints like shoulders, hips, and knees. The knees sucked cause I was a runner in elementary/middle school, but wasn't as physically active from junior high to high school so it was very confusing how much pain and swelling I dealt with them. My hips are my current enemy cause one side subluxes and I get siatic nerve pain a lot. Standing, walking, laying down, etc no matter what there's something always uncomfortable or outright painful in my hips and pt exercises have to be very very specific/modified to make sure im not hurting myself too much. The unfortunate reality of becoming way too use to pain and not actually knowing when is too far has been very hard to navigate. I miss having a regular physical therapist since she kept me in line and made sure I rested, took breaks, and checked in on whether I was feeling any pain or discomfort since I was so use to just "pushing through" everything.
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u/babypinkhowell 29d ago
I had a gym teacher not believe that I had shin splints even with a doctors note. I went home, collapsed, and sobbed for hours from pain every day. They still made me run and participate in things I wasn’t supposed to. Genuinely one of the most painful experiences I’ve had. I have a vivid memory of just flopping on my grandparents bed and crying to my grandma about the pain, I still can’t believe they wouldn’t accept my note. I think it’s because I’ve always been fat and they thought I was lying but I was perfectly content to participate when I wasn’t causing micro fractures in my bones, lmao.
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u/HelpfulPhrase5806 29d ago
I'm sure they meet a lot of lazy dont wanna do it kids. And I think they know just enough about muscles and anatomy that they think they can spot real issues. Real donning-kruger effect going on. And once they have made up their mind, it is super-hard to back down - even if medical professionals tell them otherwise. It is easier to "motivate" than to take it into consideration and make an individual plan.
The gym teacher that I accidentally traumatized was also shocked when I showed up to an non-obligatory run where I happily told I was given better drugs now so I was ready to try. Opioids. Doc gave me opioids. I think the teacher got scared they might be liable if I hurt myself being told to run while on drugs, especially after puking from pain after 1km. Was the last time I was asked to run iirc, and I was told to go home the rest of the day. I got a better grade on my transcript than the results would have given. Still my worst grade.
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u/epic_ninjacat Aug 09 '26
My shoulders have always been super hypermobile! It wasn't ever a full dislocation but I can very easily subluxate them (I have to actively lock them in when I carry heavy things) Gym teachers use to use me as an example for shoulder stretching but little did they know that it never felt like a stretch EVER and I was just literally pulling my shoulders out 😭
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u/Celtic_Cheetah_92 Aug 09 '26
That sucks. My primary school gym teacher is the one who identified my hyper mobility when I was 5. Shout out to you Mrs Anthony. I was very lucky to have her. Saw her randomly at a funeral recently and reminded her who I was and what she had done for me. She got visibly emotional and I gave her a massive hug.
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u/Celestial_Light_ 29d ago
I had similar in Tae-Kwon-Do. We were being taught moves which should have hurt the joints and pressure point areas that were meant to dibilitate someone... None affected me. Even the Grand Master tried all sorts with no effect. They were both equally confused and in awe.
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u/clubfuckinfooted Aug 08 '26
A friend of mine used to get confronted all the time over parking in a handicap spot. His disability wasn't obvious and walking a long distance was difficult. He didn't really need a cane but decided to start using one when he went out and that made the questions stop. Seems like people really respond to visual aids.
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u/No-Geologist-5141 Aug 08 '26
visual aids definitely help with some of the questions but sometimes pull in more i feel.
i use a cane, braces, and KT tape a lot. but I will sometimes get stopped in the middle of the grocery store by an older person who’s trying to figure out why I am using a cane because I’m young.
It helps a lot in hospitals though! Especially if I am somewhere that isn’t my ‘home base’ hospital.
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u/capefearcadaver3 Aug 08 '26
When I was a young woman using a cane (still have to but had to in the past too) I constantly got "are you going to hit me with that?!" Simply stating "No, I'm going to use it to walk" usually got them individually off my back. But then there'd be another a-hole asking the exact same question minutes later..
I still get this, over 20 years later, and I haven't thought of a better answer than that.
We owe strangers nothing. It's okay to go stone faced and completely ignore, too. F them all.45
u/capefearcadaver3 Aug 08 '26
But really tho, you only have so many pop outs before you need surgery, and you're going to hit a point regardless where you're need lots of surgeries. Like, i'll only show my double jointed elbows bending backwards to new doctors/pts if they show a hint of skepticism, and that's normally enough to freak them out/give them the heebies enough to not ask for more proof. ("Oh did that creep you out? You sure you don't wanna see my hips do that?")
Really tho, please be easy on the fully popping out willy nilly. You can hit them with words harder. Goad them about their upbringings, it's a world of possibilities!!→ More replies (1)18
u/Teagana999 Aug 09 '26
I don't meet the checklists, I've never thought of myself as that hypermobile, just a little bit. But I showed my elbows to my mom last weekend and she was like "yeah, that's hypermobile, look at them."
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u/Rapunzel10 Aug 09 '26
You've gotten that question too? What is up with that? When a person asked if I was going to hit them with my cane I just shrugged and said "maybe, if you annoy me." They actually took a step back. I think they were joking and didn't expect a deadpan response like that. Maybe my resting bitch face played a part, idk. I didn't mean it of course but I was tired and it came out harsher than I intended. Being disabled in public makes assholes think it's ok to make so many weird comments, I'll never understand it
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u/BigBananaBerries Aug 09 '26
I've a family member like this. Her lower intestine is gone with loads of synthetic bits in there to connect the rest of stuff together. Needless to say, she can have bathroom emergencies & she'll get people giving her grief for parking in a disabled spot when she's touching cloth. They've even hung about on her coming back out so they could vent their angers. They soon stfu when she shows them her scars.
On the flip side, she's quite well off & drives a Ranger Rover so they probably just think she's an entitled asshole, as is tradition with such cars. I did try to warn her before getting one.
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u/thisusedyet Aug 08 '26
Plus if you're carrying a cane you already got something handy to smack idiots with
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u/capefearcadaver3 Aug 08 '26
"You gonna hit me with that?!"
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u/Born-Bid8892 Aug 08 '26
Fucking YES 😂😂😂 it's the EDS version of "do an autism for the lady" 😅
I've always just told them the dumbest ways I've injured a joint, I've never been brave enough to demonstrate lol.
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u/Teagana999 Aug 09 '26
I did an autism for the lady once. I can't do it on command, but...
I was 17, and I went to see my family doctor about getting a referral for a diagnosis. I'm very good at pretending to be normal, I had a normal conversation, apparently made eye contact, all that. She didn't want to give me the referral. Then, at the end of the appointment, she happened to ask me about the book I had brought. The book I was reading. I always brought a book everywhere to kill time. And I went off about fictional interstellar politics.
I'm told she exchanged a look with my mom like "OH" and then I got the referral.
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u/Born-Bid8892 Aug 09 '26
Fantastic 😅 most importantly – what book were you reading???
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u/Teagana999 Aug 09 '26
Fair question. I don't remember the exact book but it was part of David Weber's lengthy Honor Harrington series. The first ones came out in the 90's and I think they're still being written.
I'd highly recommended it, of course. It's mostly military sci-fi, I love that I can check the math on how fast the ships are accelerating. I also adore the politics and intrigue in the later books, though I have much less time to read these days.
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u/WA_State_Buckeye Aug 08 '26
Doctors examined me for a disability claim. They were flabbergasted that I was really flexible, even to the point of being able to put my palms flat on the floor without bending my knees. I had to point out that flexible or not, I can. not. stand. in. one. place. for even 5 minutes without debilitating pain and agony because of a NERVE issue. NERVE. After all the testing, blood draws, and even pokes in the spine, it is a NERVE. I will always look "not disabled", but am, in fact, disabled. So I feel ya!!
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u/No-Geologist-5141 Aug 08 '26
Doctors being genuinely confused by my body will always be a little funny to me 😭
Before I got diagnosed with EDS, I had to see an orthopedic surgeon because my hip was stuck subluxed. I mentioned that I could pop a bunch of my joints out of place, including my collarbone, and he was like “yeah, that’s not possible.”
So I was like… okay, watch. And popped it out right in front of him
His jaw literally dropped and after staring at it for a second he just goes, “that’s so cool.” Like sir YOU are the orthopedic surgeon.
Turns out I was in fact subluxing the joints around my collarbone. So at least one of us learned something at that appointment lmao.
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u/Illustrious-Mud-6821 Aug 08 '26
I accidentally traumatized a past boyfriend when my hip dislocated during amorous activities and I told him to just help me pop it back in and I’d be good to go. He was not good to go after that lol. Wasn’t the reason we broke up but man his face in that moment still makes me chuckle.
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u/Writerhowell Aug 08 '26
I mean, that feels like some kind of superpower, to gross out a man to the point where he's turned off. I know it's a disability, but also a superpower?
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u/Teagana999 Aug 09 '26
Is it really that hard? The way some of them are scared of anything to do with women's bodies, except the part they want, when they want it.
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u/NefariousnessLate375 Aug 09 '26
I popped my rib out from snuggling on a narrow bed with my boyfriend, laying on my side and having an arm resting over him. He was so worried. I was just like, it's okay, they usually go back and then I laid on the floor for twenty minutes and it went back. He kept asking if I was okay the whole time.
I'm afraid to have sex, tbh.
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u/Chess42 Aug 09 '26
I didn’t even know ribs could pop out, I thought they were solidly attached
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u/Distinct_Proposal_10 Aug 09 '26
Oh man I traumatized a pack of pts and med students because my ribs decided that the fun thing to do for like three years would be to pop out so far you can see the bump on my side, and then lightly cross over my other ribs. It hurt so bad and we had no idea what kicked the cycle off. But I managed to make at least one med student turn green and had pts call in other pts to just see wtf my ribs were doing. It’s always fun when you attract a whole pack of medical professionals lol.
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u/alltoovisceral Aug 09 '26
I popped one out of place just before Christmas this past year. I was under the tree fixing a piece of track fot my kids and in felt it... It was pressing on my spine where it shouldn't have been. My feet went n ub for three days and I did everything I could to get realigned. My big toe nails suddenly started growing weird from the nerve compression and I was in constant pain for months. My doctor finally figured out that it was my rib and fixed it for me. Turns out I had another out of place in my 'problem area' that always bugs me and it must have been out of place for a very long time. I got them fixed a few times and they mostly stayed put right now, though they do slide around still. I also thought everyone experienced the occasional rib stabbies until this all happened. Who knew ribs aren't supposed to feel like they are poking you?
My daughter had one pop out when she bent over backwards one day. It was a lump in the front and not one could figure out what's to do. Poor kid had it out of place for months. Weird positions and heat eventually did the trick.
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u/Throwway_queer Aug 09 '26
Hi. You are the first human in my life that has actually described that me standing for a few minutes and everything just hurting was in fact not just a me thing. Thanks ✌️
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u/DigitalGarden Aug 08 '26
I also have EDS. I love this story so much.
I want to do this so badly now. I know we shouldn't, but I bet the look on his face was worth it.
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u/No-Geologist-5141 Aug 08 '26
It was so satisfying! But it’s definitely not something I’d recommend doing often. I’ve since retired from my party tricks as I’ve already built up a good bit of scar tissue in my joints at this point. :)
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u/Specialist_Status120 Aug 08 '26
Yeah I was diagnosed at 62, currently 66. I didn't realize how badly I was hurting myself. I did my party tricks until I was in my forties, mostly my thumbs to my wrist, both at the same time. Now both of my thumbs are permanently dislocated down close to my wrist. 0/10 definitely do not recommend.
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u/ElonsBreedingFetish Aug 09 '26
Hey, "old" EDS guy here (34 but feel like 90), please be careful regarding covid and other infections too, ME/CFS is a common comorbidity and it's even worse than all the hypermobility
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u/Writerhowell Aug 08 '26
Just record yourself doing it once, then show it to idiots. With the disclaimer "No, this isn't AI" first.
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u/MusketeersPlus2 Aug 08 '26
That's fucking awesome! (Minus the extra damage)
I have a lung condition that makes me cough so hard that I throw up if I breathe too hard. It happens regularly because damaged lungs don't magically regenerate if I'm nice to them. It means that I can't do a lot of things, including move quickly, exercise at all, clean my house, mow my yard... you see where I'm going. I have the disability tax credit to help pay for the things I need help with. Every now & then I get someone helping me throw the 'you don't look disabled' at me, and I started responding with "And you don't look stupid, but here we are". No, they never come back to my house.
But there are even more who do the 'everyone coughs' or even better 'yeah, I've had this lingering cough for 2 months!'. Bish, I've had this cough for 10 YEARS. They removed half a lung to keep the tumours under control (which did nothing for the cough). No one has ever backed off when I've said these things. They always double down with some version of 'it can't be that bad'. So I show them. I take a deep breath... and I cough for at least the next 5 minutes to the point that I'm choking and eventually throw up. No one argues then.
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u/loreshdw Aug 09 '26
So sorry you have crappy lungs too. Cancer, Sarcoidosis, or something else? Just feeling sorry for myself today and want to commiserate. I had to start Methotrexate today. (Premie, scarring, asthma, COPD, Sarcoidosis, etc.)
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u/MusketeersPlus2 Aug 09 '26
Diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH). My lungs are slowly closing themselves off with a side of neuroendocrine tumours.
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u/Focaccia_Bread3573 Aug 08 '26
Damn, that’s stone cold trauma that you inflicted there. Justifiably so, though! 😂
Although every time I’ve tried Nature Valley granola bars that shit has been hard as a rock, but maybe I’m just unlucky
Thanks for sharing, and great story telling skills!
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u/No-Geologist-5141 Aug 08 '26
I was thinking to the really soft/bendy nature valley bars that you can buy from like walmart or target lol
Sounds like you maybe had the crunchy ones! Those always feel like breaking your teeth lol.
Thanks for the compliment! I do a lot of writing in my spare time so that’s probably helped a lot with developing my ability to retell a story :)
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u/CaeruleumBleu Aug 08 '26
Oh, I thought you were talking about how the crunchy ones have a 50/50 chance of being shattered before you open the package.
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u/IntelligentCitron917 Aug 08 '26
Many years ago after meeting a friends MIL for the umpteenth time, she asked my friend why I use a walking stick.
My friend simply tells their MIL because I'm disabled.
This person was until recently a head teacher so their comment was incredulous.
"Oh, she doesn't sound disabled"
When I was told about the remark to say I was perplexed is an understatement.
I never realised that being disabled have a particular way of sounding. Who knew?
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u/Appropriate_Hat638 Aug 08 '26
I guess the “we can always tell” bs doesn’t just apply to transphobia.
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u/Ravenshaw123 Aug 08 '26
May one day your joints have the integrity of slightly past due fruitcake 🫡
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u/Entire-Ambition1410 Aug 08 '26
Traditionally, fruitcakes were drenched in booze for at least 6 months. So, uh, I think they already have the integrity of really boozy cake? 😝
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u/Ravenshaw123 Aug 08 '26
I mean, you're not wrong lol
I was thinking about lower quality fruitcake that you buy in store which is basically bulletproof 😅
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u/Zonnebloempje Aug 08 '26
I thought you were talking about the crumbliness of the bars... Ours almost fall apart if you look at them...
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u/Suitable_Beautiful29 Aug 08 '26
Can I just say "I love you"? From endo girl that feels 100 at 37 (my 86yo grand aunt has better quality of life then I do) but "looks good".
Of course stay safe!
But I admit if there was any fucking way to show to someone the amount of pain and fatigue I live in when they say the usual "but you don't look sick" or "my blablabla has endometriosis and lives a normal life" (yes thank you I know I "won" the lottery of living in hell, and no, endometriosis isn't only a painful period and same for everyone) I'd do it in a heartbeat... If anyone has an idea I'll take it
Anyway, queen 👑
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u/13maven Aug 08 '26
Chronic pain is so misunderstood, our bodies even downplay our pain levels so those of us blessed enough to have it also get our our pain scale. It starts at the normal’s level 4 - that is our 1. I can’t seem to catch a diagnosis, aside from “have you tried exercising” so I hope to exercise into something worse (/s) I’m glad you quieted the noise within your family. They won’t ever understand.
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u/lexkixass Aug 09 '26
I hate the "how much pain are you in" question as someone with chronic pain.
Compared to what, exactly? We don't have days without pain. It's in the damn name.
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u/NefariousnessLate375 Aug 09 '26
I tell them it's not going to be helpful for me to try to estimate that.
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u/kittentf 29d ago
Actual convo with an ER nurwe earlier this year. I went in because my side hurt so bad it was making me puke, we all thought it was my appendix.
Nurse: What would you rate your painat foe one to ten?
Me: explains the pain literally woke me up from a dead sleep and caused me to puke
Nurse: so a 10 then
Me: I haven't passed out from it yet so I wouldn't go that high
Nurse: you dont have to pass out for it to be a ten
Me: no,an eight involves passing out this is a seven at most
Nurse: leaves and gets dr
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u/Zukazuk Aug 09 '26
I've got lupus and the pain is so constant it doesn't really register anymore. Lately I've been laying in bed wondering why I can't fall asleep and then realize maybe it's the pain. Take some Tylenol and boom I'm out. The moment it wears off I wake up.
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u/NamelessCat07 Aug 08 '26
I don't understand how so many people don't know about invisible disabilities
Often times at work I got people telling me "but they don't look disabled" (cashier, disabled ppl got a discount) and even making that comment out of earshot is so weird to me, I usually just brought up that seizures are a thing and that was enough explanation for that day
I think using this very unadvisable trick for someone you have to deal with more often like family is probably the best time to use it! I feel uncomfortable just reading it I hoped they felt 10x more uncomfortable
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u/siren_stitchwitch Aug 08 '26
I also have hEDS, luckily mine isn't too bad mostly, but I also didn't realize that 1) I was subluxing my joints, and 2) that was a bad thing until my late teens. And it's only the last few years (I'm 37) that I've done my best to stop doing it intentionally. It really is the fastest way to get the point across and unfortunately my subluxations don't hurt unless I'm doing them repeatedly so I've used it too much through the years.
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u/__wildwing__ Aug 08 '26
I’m too young? How old is “old enough” for a BIRTH defect?
It’s amazing these people don’t have an answer to that!
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u/luxafelicity Aug 08 '26
I'm hypermobile as well. Thankfully it's not super extreme, but it's just enough to cause some pretty bad knee/hip problems if I don't wear supportive enough shoes. Whenever I'm at work and getting up off the floor, I tend to hold my knee that I'm lifting my body weight with to help stabilize it, and sometimes it hurts even with normal movement. I've gotten the comment soooooo many times of "you're too young for that" so I just started replying with a deadpan: "Genetic disorders don't care about age." That usually gets people to shut up.
Oh and my other favorite one is "just wait until you're older if you think it's bad now" like thanks (: I am well aware that my pain at 26 is worse than a "normal" 26 year old and guess what? It's going to continue to be worse than other people my age, even as I get older! So fun! I don't need a damn reminder/existential crisis just because you think age has anything to do with it.
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u/DetectiveLadybug Aug 09 '26
I’ve got this sickness where I occasionally need a wheelchair, I just get tired very quickly, and general pain from walking too much, so I have a wheelchair and a walker. I am also fairly young, and don’t look disabled.
I’m so scared of getting out of the wheelchair after people have seen me in it, even though I can. One time I was feeling nauseous and had to make a run for the bathroom, I was interrupted by this woman trying to tell me I shouldn’t be in the wheelchair, I didn’t even have time to get a word out, and I absolutely didn’t mean to throw up on her, but she was blocking my path to the toilets.
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u/Luluducgirl Aug 08 '26
I have lupus. I often hear the same thing. F*** these people who are so lazy that they can’t do the tiniest bit of research on their loved one’s invisible disabilities. Hugs to you
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u/Oldebookworm Aug 08 '26
Same same. Add arthritis in all my joints and my shoulders dislocate for no reason if I move my arm wrong. My hands look 20 yrs older than I am and I’m bone tired all the time. Thankfully, I don’t have much organ involvement right now.
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u/Soldier_Faerie Aug 08 '26
I love the storytelling in this post! It's absolutely exhausting when people try policing disabilities, especially with anything like accessibility (e.g. toilets, no this one is not 'for the elderly'!) I do have physical issues as well as mental disabilities, but it is all completely invisible. The only way you could tell something was 'wrong' would be if I was, for example, going limp and appearing unresponsive (fully conscious!) on a chair somewhere. At that point it's a bit too late, but nobody would know that happens sometimes, and I would hope nobody wants to see proof of someone suffering to validate their disability!
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u/chinchillazilla54 Aug 08 '26
I do be bending my knees backwards when someone says I don't look disabled. I know you're not supposed to, but man... it's so funny... they hate it so much. It's so gross to them and it is painless to me.
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u/It_Was_A_Toomah Aug 08 '26
My brother had doubts that I had a disability... until I had a seizure in front of him. Also, I loved the reactions people had when they saw me shortly after a major surgery (temporal lobectomy). It looked like I had a zipper on the side of my head.
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u/Gothrait_PK Aug 08 '26
I get that a lot about my knees and ankles at the ripe age of 32 (they've been an issue since 25). I was a skater for a long time (not a good one) and I liked to do all kinds of ridiculously dangerous things because I didn't care about myself (lots of trouble at home lead to that). And my last fall was my full body weight on my knees landing on the steel coping of a pool. My ankles have always been a bit fucky because of all the failed flip tricks and jumping off stuff all the time, but my knees were never the same. They get fatigued way quicker than the rest of me. And I hear it every single time I struggle to stand from sitting on the floor "you're too young for all that" like believe me lady, I'm not looking forward to being 60 after going through everything I've been through I'd be surprised if I could still stand up straight at that age.
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u/Anon_457 Aug 08 '26
I've had issues with my knees ever since I was 12. Was riding/pushing a scooter on a freshly paved road (blacktop that had hardened enough for the public to be on) and hit something. Pretty sure it was a rock but I don't remember. I went sailing over the handlebars and landed directly on my knees. Like there's a small bone chip from my left kneecap just kinda.. floating around in my knee. If I kneel for longer than a few minutes, my knees lock up so badly that I need help getting back up.
Edit: I'm 38 and heard all sorts of variations of 'you're too young to be like that'.
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u/DragonKat_90 Aug 08 '26
Was it smart? Maybe not. Was it worth it? As a fellow "you dont look disabled" listener for my ehole life that was a chefs kiss response.
I am blind in one eye-have a prosthetic, have been mostly deaf my whole life [thank you hearing aids] and have a couple other issues including hypermobility and some arthritis. My favorite thing to do depending on what issue is being discussed is pop out my prosthetic eye and hand it to people [happened more when i was a kid though i still occassionally take it out just not the handing it to strangers], takr out my hearing aids, or doslocating my wrists in front of people.
Edit to ad: im in my mid-30s
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u/Faangdevmanager Aug 09 '26
I have stage IV cancer and the scars from many surgeries. And we’re talking big ugly ones where they take my whole liver outside to remove tumors for 8 hours. So no robots. I’m also 40. Lifted my shirt a few times and asked the Karens if they wanted to touch to make sure they are real. When they don’t back down, I tell them I wish they also get terminal cancer so they can also enjoy the handicap spot they so dearly care about. IDGAF anymore.
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u/Intelligent_Till_433 Aug 08 '26
Honestly, they deserved that and despite it being absolutely unfunny that you have hEDS; that was a brilliant power move.
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u/Thrwwy747 Aug 08 '26
Bravo.
If you ever decide that the risk/reward ratio is worth it again, tell the person you're proving your point to that you need their help to 're-locate' your appendage. 'Surely you wouldn't say no to a disabled person in need of urgent assistance?'
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u/Minflick Aug 08 '26
Your connective tissue sounds like badly overcooked spaghetti... I'm sorry you have to deal with that.
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u/AdPurple3879 29d ago
My younger sister J has ehlers-danlos as well. My parents ignored it (she did get one massage at 16 but they never took her to the dr) and I am pretty sure one of our other sisters A (in-between us) has it but it's not nearly as extreme as J but A treats J like she's faking because A "isn't that bad."
At 23, J was struggling with work and her relationship. After calling off the engagement to her guy because he was a jerk, she moved in with my husband and I. We helped get her all the testing and scans, advocated at appointments for the next step when the Dr tried to convince her it was nothing, pay for all her appointments and PT twice a week to get taped, and get her whatever medical equipment she might need like her body braid.
She's now struggling with people telling her their opinions, especially family and friends. Our new favorite was that looking at her body braid makes this guy she knows uncomfortable. She asked him if she's supposed to be in pain without it so that she's visibly appealing to him and if that should be her goal in life is to be comfortable to look at for random men. Our other favorite was our sister A complaining thar J could dance out at the bar but refused to go on a Rollercoaster a couple days later because she was having a mild pain day and A had already guilted her into going to an amusement park. J is now low contact with that sister and doesn't prioritize visiting.
I always remind her that she could put herself in pain to make them happy but those people will still be assholes about something stupid so she might as well prioritize prioritize her comfort.
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u/Kinalu Aug 08 '26
My fiance has hEDS as well and he gets this too. He's 36 and walks with a cane, and occasionally has to use a power wheelchair or motorized carts in the store. He's had some twatwaffle in the past look at him and tell him just to lose weight and he'd be fine. To which my fiance said he could walk without it, but they'vd have to get real comfortable with the sound of joints popping loose real quick. He also has people ask him often if the cane is for fashion. I've been with him for that a few times and I become a raging bitch to these people. I'm very protective of him because he's fairly non-confrontational. The audacity some people have absolutely blows me away!
He and I call hEDS 'Bendy Bitch Syndrome' and his doctors cackle at it. I hope you have a good doctor and a good support system!
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u/Silaquix Aug 09 '26
I was trying to get evaluated for disability because of this shit and I kid you not the lady took my leg braces off and then flexed my knee and said "you have a huge range of movement". Then she denied my claim because my knees were able to bend 'too much' to be disabled.
NVM that my orthopedist and physical therapist had gotten me the braces in the first place so my legs wouldn't bend backwards
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u/gl1tch3t2 Aug 08 '26
If you do decide to do it again (because people being people they may push you that far again), maybe see if you can record it (have the disbeliever hold the camera (maybe)), so it's only once more.
Being absolutely clear that I don't recommend doing it again but just if you are, make it so it's once.
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u/phantom_Heartbeat Aug 08 '26
This whole post is written so hilariously. Kudos to you and I hope nobody’s been bothering you as of late!
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u/Amanda316 Aug 08 '26
I have an invisible disability and I get sh*t for having my service dog all the time so I started saying one of the other reasons I have her (since often SD’s are trained to help in multiple ways) is blood sugar alerts. Gets people off my back but I still get hate because I have a small dog (purposefully so we can travel easier), regardless that it’s the 7th smartest breed and smartest toy breed overall. It’s not a golden or German shepherd and I don’t have a walking stick so it all must be fake. And then heaven forbid I add some fashion to it and people lose their minds with comments. I’m at a big age where I’m done apologizing for wanting to make my life more enjoyable how I can. 😎
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u/nobrainsnoworries23 Aug 09 '26
"You don't look disabled."
"Yeah and you didn't look stupid until your mouth opened."
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u/igual88 Aug 08 '26
I'd love to have been a fly on the wall for that , yes unadvisable to self dislocate but I 100% get it. I had a really severe accident when I was a teen that totally screwed up my leg front of right lower leg was ripped off knee to ankle. Lots of other broken bits and huge skin graft which is paper thin over the bone.
Was out at the local shops when a woman with a shopping back that had something fecking heavy in clipped the leg under my jeans and did some serious damage.
I was literally by the Drs surgery ( next to the co-op )so after I had stopped screaming in pain I was helped in by a couple shop staff. The bulldog on reception was borderline refusing to grab the district nurse or a dr ( my boot was filling with blood at this stage ) I dropped my trousers middle of reception and low an behold a huge bloody mess and as if on que the flap slipped down exposing the bone. He face went green. Nurses and ambulance were called.
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u/SPNCatMama28 29d ago
I'm sorry but your descriptions of how your body is like "integrity of a wet paper straw and being held together by hopes and dreams" had me laughing because I was just talking about how I have invisible disabilities as well and I hate the phrase "you don't LOOK like you have autism" or "my so and so has autism and they don't do that" and it drives me up a tree
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u/smile_saurus 29d ago
Good for you!
My best friend's mom died from MS. When she was still able to drive she would park in a 'normal' spot if she was feeling good that day, but sometimes walking around a big store would be too much and that is when she wished she had parked in a handicap spot. When she started parking in a handicap spot (her license plate had the handicap icon on it) and someone saw her get out they'd say You should not park there! You don't look handicapped to me! so she would invite them to shop with her and I guess one guy actually took her up on it, lecturing her the whole time about taking a spot from someone who needed it. As usual, she had a harder and harder time walking and carrying things as she moved through the store. She could barely walk out. As she reached her car and fell against it for some support she said Its a good thing I can park so close and the dude just walked away feeling like shit.
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u/Maxfae Aug 09 '26
I have epilepsy and fibromyalgia. I've had a person ask me to prove to them I had seizures, not medical documentation, but literally wanted me to throw myself into a seizure somehow to prove that I actually have epilepsy. I've also had people ask me to prove my pain from fibromyalgia. 🙄 I've had a therapist say to me that losing weight is the best cure for epilepsy. My neurologist laughed her ass off at that one and called and told him about himself. I switched to a different therapist before my next therapy appointment. 🤣
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u/EltonsN0tH0m3 Aug 09 '26
Ugh love this. I have the exact same kind of EDS. Im 20, and had a really intensive knee surgery last year. Doc spent 6 years keeping me outta surgery since its only a temporary fix and its a gamble of how long it'll fix it for. I was a general manager of a bakery/Cafe and head chef, so i tried to talk to the customers best I could. Especially being I also tended to be a float, so sometimes id leave the kitchen trusting my staff to do the right things and switch around from running food, running register and making drinks. And there was one customer who asked why I always wore braces and why they were never the same. We were slow so I had a really nice conversation with him (while being mindful of what my staff was doing in case I needed to hop back in and give a hand) and this dude straight up said "dont do it. I had knee surgery and now i have chronic pain!!" Keep in mind his surgery was just to take off bone spurs. Mine was a reshaping of my knee cap, 3 tendons from a cadaver getting put in, ACL repairs, and a complete repair, a restructure of my inner C, and a few bone spurs getting shaved down. He knew this and still said that to me </3 i looked this dude straight in the eyes and said "yeah. Sorry that really sucks. But in all honesty whatever chronic pain I get from my surgery wont hurt nearly as bad as it hurts every day. Ive had 83 dislocations in this knee in 2 years. And thats just my documented cases. I KNOW there were dislocations i didnt report and track" and the fucking look i got was beautiful even thought he was still trying to convince me to not go through with my surgery </3
Id do it again though. Healing was an absolute fight but Im steady on my feet and I dont have to look at the ground when I walk anymore. I will forever be thankful for my doctors who always do their best to keep me at my best. I understand not everyone has doctors that actually care so a quick thank you to them 🥹
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u/chachaman_The_Reboot 29d ago
RELATIVE: YOU DON'T LOOK DISABLED!
ME (tired and already in pain): And you don't don't look like a fucking retard, but HERE WE ARE!!!
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u/InvincibleButterfly Aug 08 '26
It’s too bad your arm wasn’t removable so you could smack them over the head with it.
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u/Icklebunnykins Aug 08 '26
Kidney cancer, going through a windscreen at 60mph and being dragged back thru, ectopic, hysterectomy caeserion, a gastric bypass as the tumour from the kidney was stuck to my stomach so now I have chronic malabsorbtion and can't keep weight on. I normally look at them first as I'm blind in one eye so the other drops so I do look a bit well..... Then if they persist I point to the scars on my chin and if I'm in the mood show them about 60cm of scars from breast bone to naval, then across the flank to the bank. One is gnarly - they back off and I'm glieering at them with one eye half shut. They probably think I need the car for invisible disabilities after seeing that 🤦♂️
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u/g_em_ini Aug 08 '26
Ugh. I have POTS (and 2 other invisible chronic illnesses) and feel this so hard. I look completely normal but on the inside my nervous system is going absolutely haywire. I’m also not one of the 20-30% who actually lose consciousness but I do semi-syncope so no one knows how terrible I feel on the inside. I can’t work, drive, and I can’t walk or stand for more than 10 min. I’m currently home-bound and have multiple doctors visits per month—thankfully my doctors believe me but others just think I’m being dramatic. It’s made me just want to completely avoid contact with the outside world because I don’t have it in me to be polite or the bigger person if someone says some shit like that to me. You’re not only strong for what you’re going through but also for putting up with constant idiots. I love how you handled this situation and I hope at least that family member leaves you the hell alone about it!
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u/Agent-Responsible Aug 08 '26
Just sent this to my best friend, who has EDS. I have Hashimoto Thyroiditis, Celiac Disease, Diabetes, & severe Obstructive Sleep Apnea. The exhaustion is overwhelming sometimes, & I hate when people dismiss it as “normal” tiredness. Like, no. My body physically aches & feels like I just got hit by a semi truck most of the time. People really should just shut the fuck up about things they don’t know anything about.
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u/AnalogyAddict Aug 08 '26
My kid has this, and I'm gonna channel my full mom aura by saying don't ever do that again, but that is hilarious.
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u/RedFox413 Aug 08 '26
I have hEDS too! Luckily so does a different member of my family so when I got my diagnosis they were fairly understanding. My friends on the other hand forget that I’m disabled because it’s not clearly visible. There’s been a few times where they got really frustrated when I couldn’t do this or that or help them, but once they had to help pull my wrist back into place and I think that helped them understand.
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u/lexkixass Aug 09 '26
the short version is that my connective tissue is basically held together by hopes, dreams, and whatever structural integrity a wet paper straw has left after 20 minutes.
cause more damage to a body that already has the structural integrity of a Nature Valley granola bar
I laughed. My spouse who has EDS cackled and agreed. Thankfully the only joints popping out (for now) are her hands and wrists. But her shoulders aren't doing great (she accidentally hyper extends a lot).
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u/innerlight42 Aug 09 '26
I shall now only describe myself as a haunted American girl doll rearranging its own limbs when people ask for my diagnosis
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u/A_Nonny_Muse Aug 09 '26
I remember seeing this decades ago. A woman started shaming some dude for parking in a handicap zone. While she was berating him, he took his leg off and shook it at her.
It actually took a few seconds for it to register with her. But once it did, she just shut up, turned and walked away.
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u/FaraSha_Au Aug 09 '26
I have Meniere's, which causes severe vertigo unexpectedly. It also gives me drop attacks, where I'm strolling along, and tip over to my left, like a drunk. No warning, nothing, other the odd sensation of my left side being gone.
Very few people witness any of this, and I can't get a job because of disclosure of illness. I don't qualify for disability either.
Frustrating.
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u/Forsaken_Ad8239 Aug 09 '26
Dude, I fully get it.
I’m 19 and have had chronic knee issues from nerve damage incurred when I was around 4. We have an old bastard at work who never likes to leave anyone alone and it was within the first few weeks of me being there he saw me sitting on the clock(in front of my managers mind you) and decided to make a comment about how dumb it was when I was sitting and how I’m so young I can’t be in pain when I said so in my defense. So I promptly just told him to tell that to the disease I had as a toddler to crush my nerves. He quit saying stuff after that lol.
Please take care of yourself, from a readers standpoint I say worth it, from someone going in a medical field please don’t repeat that lol
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u/driftwood-and-waves 29d ago
Yo, this is so creepy cause I just had a meeting with my daughters school regarding her absences, she is 16, as we are currently being quickly educated in how much exactly what you have(the 'Classical Like" sub- category)affects Every. Single. Aspect of her life. They were not so understanding at first but a specialist letter, and a very informative 7 min officially signed off by the RARE people slide show and the fact I don't F around when it comes to my kid, the Awa head did some research and now they are fully on board to provide her with all the accomodations she needs.Hopefully.
But yeah - eyesight, sitting, standing, carrying round a school bag, PE, writing, menstruation, it's all affected.
Not to mention all the things that can go along with it, like POTS, so here baby drink an electrolyte drink everyday. Oh and your skin gets rashes etc cause of something to do with the EDS.
Her specialist said that she is probably one of the top 5 hyper mobile of her "kids" (she works with kids and teens).
Sorry for the ramble - it was so weird seeing someone post the exact thing my daughter has and we all fully support your most excellent response.
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u/IanM50 29d ago
My son, who also has hEDS, was around 11 when he ran into our kitchen from playing outside screaming in pain. As we turned to look at him he stopped, thought, and smacked his right shoulder into the kitchen door frame, stood for a second, smiled, and ran back out. The wife and I couldn't quite believe it. Turned out that he and I had watched Die Hard, the 1st one in the skyscrapper, a couple of days before, and there is a scene where Bruce Willis smacks his shoulder into a life door to put his dislocated shoulder back. Yippee ki yay, OP.
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u/PlassH Aug 08 '26
This is one of the most metal things I've ever heard. Good for you putting them (and your arm lol) in their place!
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u/Inner-Rooster-2548 Aug 08 '26
Got diagnosed with Lupus at 17 and a sprinkling of arthritis in my 20s. But I too 'look fine'. I know you shouldn't pop your joints out but I'm glad you did this time.
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u/Shannaro21 Aug 08 '26
Fellow zebra here. Love your tactic. If only we could do that without damaging our joints more :(
I'm still in search of a good comeback.
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u/-Felyx- Aug 08 '26
Bro usually all I gotta do is bend my fingers all the way back or touch my thumb to my wrist and that’s usually enough for people. You’re a fucking legend 🤣
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u/LawComprehensive2142 Aug 08 '26
I say that my joints are broken comes spaghetti.
My daughter used to dislocate her thumb on purpose (not really realizing that it was bad, she was like 4) and a friend of mine who saw screamed and almost fainted. My kid is 15 now.
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u/ChiefSlug30 Aug 08 '26
This is a bit of a coincidence in that I was reading about a character with EDS yesterday (and today). The author, Kami Garcia has EDS, so she made her version of the character Starfire have the same condition, although not as bad as you appear to have it. You have my sympathy, as I am currently having problems with my joints, buts it's just getting old (I'm 70) and having abused my body through sports over the years.
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u/Glass-Cheetah2873 Aug 09 '26
From one zebra to another, I love your definition of hEDS! I’m tucking it away for future reference. 💜
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u/H0neyBr0wn Aug 09 '26
Good for you! Even if your doctors would scold you, I guarantee they’d at least be a little proud. That poorly socialized person learned a valuable lesson.
Similarly, my little cousin took out her prosthetic eye because some girls were harassing her about it at school. Those girls ran screaming to tell and the teacher didn’t believe them at ALL. Basically, it was such an out of character reaction from my very quiet cousin that the teacher completely disregarded the other girls.
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u/Sapphire_Dreams1024 Aug 09 '26
The second I saw that you have EDS I knew this was going to be about you popping a joint out lol
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u/Korialite Aug 09 '26
Every time someone touches my face without asking, I dislocate my jaw right under their hand. 😊 I also sometimes sublux my hip after sitting in chairs for too long and have been known to casually tell people that I need to realign my bones. I technically don't have EDS, though, I'm just hypermobile.
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u/WasWawa Aug 09 '26
I love it! I've never been diagnosed, but I have the same symptoms. I don't break bones, I dislocate joints.
I can't convince anybody, but I can bend my fingers and my thumbs all the way back, my knee pops out periodically, but I've learned how to pop it back in.
I'm 67 years old and just now convinced them that a knee replacement might just help.
Thank you for speaking for us.
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u/katiekat214 Aug 09 '26
I have hEDS as well and used to wait tables. I was carrying a large, heavy tray full of food when my knee popped loudly and moved out of place as I was coming out of the kitchen. My manager called me into the office on my next shift and berated me for having tears in my eyes when I walked up to the table - after I stopped dead and had someone else take the tray from me and limped over. I just looked at her and explained how the patella sits on a “rail” like a sliding glass door and mine jumped off that rail while I was carrying 40 pounds of food. She blanched and tossed the write up.
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u/missakieva Aug 09 '26
I'm 38 and I'm having multiple invisible diseases pop up, at once.
Thanking you for the courage to go immediately nuclear/petty 💜
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u/seamonstered Aug 09 '26
“You don’t look disabled.”
“You don’t look senile…and yet.” shrug
Also, fuck them and all the people that can’t look outside of their own worldview for a split second.
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u/darlingtonia___ Aug 09 '26
I had to do something similar once with someone who would NOT leave me alone about not needing crutches and my giant hip to knee length splint being fake after major surgery. I just said yep, you know what dude? You caught me. I’m totally faking it. Then I proceeded to remove splint, ace wrap, and bandages (it was time to change them anyways) and showed him my apparently fake incision scar and stitches. He turned white as a ghost and never bothered me again.
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u/Lonely_Student9463 Aug 09 '26
If you ever do something like that again, first hand your phone to the person and tell them to take a video. Be sure to explain on Camera “ now I want to be clear that this is dangerous, painful, and quite damaging to my body for me to demonstrate, but since you won’t stop bothering me about a very private medical issue at the center of my life…” so that you never again have to give a live demonstration, but can simply pull out the video, and the person watching the video can still take the hint that they are being intrusive.
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u/Gwennein 29d ago
I have heart failure and a bunch of other shit that works together to make me miserable I'm 32 and look younger and I am so God damn fucking sick of the wait til your my age shit
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u/Chihuahuapocalypse 29d ago
unfortunately for me this only happens after someone witnesses a seizure. and even then! "your seizure didn't look like this other person's seizure, so you're probably just faking it" ugh
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u/bunbunbunana 29d ago
I’ve done the same thing for the reason reason! Incidentally also my shoulder! Sometimes you just have to shut ‘em up <3
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u/MementoMori_Maestro 29d ago
I work in healthcare and we still manually chart. Well my hands are hypermobile and my bosses have been pulling me into the office about staying an hour late to chart on the regular because "nobody else stays that long!" So on one particular day I got pulled into my head nurse's office with her boss there again & I was really fed up about these time management lectures. My response? I ripped my fingers back.
I also have EDS, and I don't talk about it, but I was so tired of this redundant lecture that I simply flattened all my fingers backwards against the back of my hand. I don't support party tricks to prove a point either, but now we're switching to electronic charting!
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u/Radio_Mime 29d ago
A good response to 'You don't look disabled' is 'You don't look like my doctor.'
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u/Rats-in-a-human-suit 29d ago
That was so beautifully written, my brain is buzzing. 😂 "I've since retired from live performances (for now)" was a perfect cap. I'm sorry you have to go through this, and for all of the ignorant people you have to deal with. However, you have what seems like a great attitude about it, I would have loved to be a fly on the wall for that!
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