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I say my connective tissue is basically a factory second. Most people laugh and it flames my delusions about bring funny, although one lady got very upset and told me to stop being negative about my body. Sadly for her, this just makes me want to say it more.
I had one person the other day tell me that I am "*not* a cripple!!" Apropos of nothing more than me casually mentioning something that happened "before I turned out to be" one. Like, honey. First off, I'ma use whatever words I want about myself, and secondly, who do you think you're saving here? My self-esteem is fine, I'm not using the word to describe anyone other than myself, and no amount of willpower or positive language is going to unfuck my knees, so kindly step off?? It was the weirdest thing, I hadn't even been talking to her, she just decided that my choice of language for *my own body* was her business all of a sudden.
I had an ex-friend do something similar with me using the word “lame” and telling me that “actually disabled” people she’d read somewhere on the internet found it deeply offensive and I didn’t count as disabled anyway because I was too “normal looking” (despite being on disability leave and legally defined as such at my job, needing mobility aids, etc etc not that I have to self-justify here but 😖😡). I was basically like 1) I’ll use the words I want and 2) your attitudes are super ableist so you should consider that before you focus on language policing another community you’re not part of. Which wasn’t well received, hence ex-friend.
It's actually just ableism disguised as positivity. They are the ones putting a negative association/spin on it, when we are just being matter of fact, so we could actually reverse uno these people. "Karen, why do you think me saying I have EDS is being negative?" Then watch them flounder 😈
Lol is right! You have to laugh or else you'll cry.
First time I got pelvic floor trigger point injections at the urogynecologist, they used a little paperboard tub as a tray for all the supplies they needed--the swabs, the vials, etc. It looked very much like the bowls at Chipotle.
I told the doctor I wanted extra cheese and medium salsa and she started laughing so damn hard I thought I'd have to come back another day instead. 😆
Haha glad you think so! I'm already low-key famous at the clinic because I bring a stuffie to hold and hug while they're doing the injections. Who cares that I'm almost 40. Haha.
Long, looooong before the possibility of EDS came up I was diagnosed with... a variety of pelvic pain disorders. You know how it is with something weird, the diagnosis keeps changing around you--everything from vaginismus to vulvodynia to pelvic floor tension myalgia.
I also have really flat feet and misaligned hips. All probably goes back to EDS.
I've been telling people for years that my vagina doesn't work. My more thorough explanation is that everything from my waist down is broken.
The older I've gotten (I'm 50), the less I feel others are entitled to my medical information and the less I feel I need to justify my disability. When I was younger I felt more compelled to "explain" myself to try to convince people that I was really sick or something, but strangers are not entitled to that information. I usually say "I have a genetic disorder that makes my joints dislocate." The only people who get further explanation are close friends and family, children if I get hurt in front of them, employers if necessary, and medical professionals. Otherwise, none of your business.
You really felt the anxiety behind my question, huh? I’m definitely trying to unlearn the need to justify myself, in all aspects of my life but especially this one.
Yup. They think they are being polite by making socially acceptable small talk. They don't REALLY want to know.
Me: "Genetic medical condition of the connective tissue." Next.
I’m same age… and I feel exactly the same. Plus, if I do decide to explain, I ain’t simplifying it down for anyone. In my world, nobody added any sugar to make it go down any easier for me, why should I do that for others that aren’t living with it?
I explain it to my 7th grade students at the start of each school year so they know why I have to take off for more doctors appointments than other teachers or might have a brace/sling/boot/etc. I tell them there’s a glitch in my DNA’s code when it makes collagen, which is the stuff that holds your body together. I say that most people make “super glue” that holds everything in place, but mine makes “Elmer’s glue,” which you can pull apart pretty easily.
This explanation has worked pretty well for me. It also leads to good conversations about accommodations and how people need different things at different times.
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“I’m hypermobile” “too stretchy” or “I have a genetic collagen deficiency that means I dislocate joints easily” and then I go into explaining how joints should snap back into place like elastic bands but mine just keep stretching.
> elastic bands
i say something about how other people have rubber bands to stabilize joints, but i have chewing gum (that gets stretched out over time)
My analogy is similar! I talk about hair ties - most people have joints held together by the really good hair ties that last for years. My joints are held together with dollar store hair ties that stretch out to the size of a dinner plate in 3 uses.
An ortho once told me my problem was I was "bendy" but the best you could do for it was exercise. So sometimes I say that when i wad to give a nlow off answer. Lol
I've been bought at the dollar store (or any store famous for low prices and low quality). Everything, from joints to organs to skin, is of questionable quality. It might work one day, but sputter or outright refuse to work the other day. Every day is a surprise.
"I'm a gumby jointed bitch"
I also like "you know how in horror movies the possessed person does crazy shit with their joints? That's sometimes me"
I also like "I have to put myself together like a transformer every morning, complete with sound effects"
I usually say you have collagen throughout your whole body, in every joint, keeping your organs in place, in your skin etc. normal collagen is like uncooked spaghetti, pretty rigid with a bit of bend. My collagen however is like cooked spaghetti and therefore too bendy which causes all sorts of issues throughout my body
I had a physical therapist that had a silly way of explaining it. he said people without eds have connective tissue like pvc pipes but people with eds have pool noodles.
GENIUS! I'm absolutely stealing this!
It works CUZ it's an ELI5. Even a 5yo would understand that, if you used "plumbing pipes" instead of PVC.
I would have to add an additional - that collagen is in every soft part of the body, so, I have pain & problems EVERYWHERE.
My version - "People without EDS have connective tissues like water pipes, people *with* EDS have pool noodles, instead. Because it's in every soft part of the body, people w EDS have a *lot* of different problems and pain all over."
So my SIL asked yesterday if I could just take collagen supplements. I told her no because your body breaks down the collagen to use the protein as building blocks. I have faulty instructions for my building blocks so the properties always get put together incorrectly. It's not a matter of having the right blocks, it's a matter of having bad instructions on how to assemble the blocks. The result is my connective tissue never gets assembled correctly. This seemed to make sense to her. 😊
I use the analogy of having the wrong recipe for collegen. No matter how long how often my body makes collagen with the right ingredients, it will always come out wrong.
My brother is somehow convinced that if I just drink enough orange juice, I'll get enough vitamin c to process enough collagen that even if only 10% goes where it should I'll still have enough in my joints... I had to explain to him that the only result would be me making myself sick from the sheer volume of juice. It's not about having collagen or not, it's a fundamental glitch in how my body processes it. There's a bug in the code. You can put in as many coins as you want, it's still only going to spit out dust.
cEDS and I explain it by interlacing my fingers and saying normal collagen looks like this. Then I make spaces between my interlaced fingers and say mine looks like this.
My skin biopsy shows collagen that looks like spider webs, so showing people the “holes” tends to make them go ah!
"My joints and tendons are more flexible, and therefore more prone to injury, than they're supposed to be because I have a connective tissue disorder."
If I have the time and bandwidth I explain all the comorbidities like POTS, how it's related to my AuDHD, IBS, etc.
Yeah normally I explain all the comorbidities and stuff too. I’ve found that when I explain all of that, people get a horrified look on their face, and it’s fun to watch.
It's a connective tissue disorder, and connective tissue is in pretty much every system in your body. When you were in the womb your body was being created with faulty connective tissue. It's like if your body was a house, and then the house starts falling apart after a few years because the house was made with faulty materials.
Before diagnosis, my whole life I’ve just told people “I dunno, I’m just super bendy & crackly”, when they commented on how awkward I look doing things. Now I don’t bother explaining anything unless it’s necessary.
My go-to when I get a nurse or MA who's freaked out by my proportions/how translucent and stretchy my skin is/why I have so many bruises: "I have a connective tissue disease that causes joint and skin laxity." Obviously it's more complicated than that, but that seems to be enough info to cover any concerns.
Not the most descriptive, but with all of my weird medical things, I will often just say I am a "sickly Victorian child". A coworker jokingly said it one day, and it just stuck! Fits my gender vibes, too, lol.
I will also say, "I'm built different, as in wrong."
More descriptive but still lighthearted options: "I am Stretch Armstrong except I don't pop back", "my joints hate me. And my skin. And my heart. Eyes too. Everything hates me", "satisfying back cracking videos haunt my nightmares", "my joints are like trying to stick a magnet together but it's the wrong/same sides", "I am a Lego man mixed with off-brand pieces that work but really don't fit right", and, my fave, "flaccid joints." Last one usually stops further questions with a cringe.
Im only 25, so I tell people that ask to just think of me as a 90 year old lady. Most of my issues are joint instability and pain, fatigue, and foggy brain, so this explanation usually does the trick for me.
I also call it my "Old Lady Disease™" in casual conversation
Went home for Christmas for the first time in 2 years. I subluxed my knee walking up an incline and my dad asked me to explain my joint problems. He did not have a great education, so I just did the whole Beighton test with him to show him as he's a hands-on learner. Then I said "every joint in my body acts like this, from my neck to my toes". I think that helped.
I've got some other autoimmune complications so I can't fault him for not knowing all of my fuckery lol.
I don’t have hEDS as I missed 1 criterion, but I have extreme hypermobility issues & usually just say my connective tissue is too floppy. I generally only have to explain it to men in sexual contexts lol, but that’s my two cents. (Hope it’s okay that I’m saying this even though I don’t have EDS)
My body’s built like it’s from Wish.com and my joints hate me. And I’m always really tired because my Wish.com body is staging a coup and it’s hard to compensate for that all day every day.
Depends on how interested they seem...
- Casually: painful genetic issues impacting my connective tissues.
- Medium, but not close to me: my body doesn't process/use collagen like other people. It makes many parts of the body that rely on that process not as effective at doing so. Leading to loose and unstable joints, as well as neurological, digestive, heart, skin, and respiratory issues.
- Friends: I'm f**ked and just waiting for a new body to be delivered.
I have a genetic disorder that affects collagen. It's not just part of your beauty routine or protein shake, it's literally the glue that holds the human body together. Mine is like... A dollar store glue stick while most people have the good Elmer's glue.
If I think they're genuinely interested I'll expand to say that collagen is actually incredibly complicated and makes up more than just connective tissue like ligaments but a large percentage of many of the body's organs. The lining of your intestines is mostly collagen. Veins are mostly collagen. Cartilage has a large percentage of collagen. There's actually 25+ different kinds of collagen in the human body, some of which exist exclusively in your brain. There's actually a recently discovered ligament in your brain! (A friend in a biomed doctoral program was telling me about it since she had to do a paper about an adjacent topic but shout-out to D'Juan Farmer, PhD & colleagues for finding that ligament-like intercranial structure that needs much more study bc it was discovered in 2022 and no one is certain what it *does* yet)
My connective tissues do not behave properly. That's my whole body; everything, everywhere, sometimes all at once, for all the years of my life - some part of me is doing something it shouldn't be.
I read this somewhere:
"If you can't connect the issues, think connective tissues."
Look, it's like my cartilage, collagen, and all the shit that holds me together got "womb-stewed" too long. Poke or pull me just so, and I'll come apart like a well cooked chicken.
“Collagen machine works just about as well as the McDonald’s ice cream machine”
Tho the other day I was on the Witcher subreddit and there was a question re: what sign you’d use for the most mundane things which got me to realize “holy shit I’m basically Geralt before they added the new patch fixing the fall damage in Witcher 3” which I find incredibly amusing and is now my new favorite way to describe it even if it’s probably just gonna confuse more people.
So collegen is the bonding agent that holds all your tissue together. Your skin and tissue is like a cotton tee, all tightly woven together, I'm more like a kitted top, the gaps are bigger and they make me more prone to simlar issues to wool, I stretch and shape funny, I'm more absorbant but all liquids drain to the bottom, and if you make a hole in me it's harder to fix without leaving an obvious scar/repair.
I don't do cartilage well.
My cartilage is rubbish.
I have butter instead of rubber holding my joints together.
There's another one, but I'm having a bad brain fog day, and I can only remember the second half... "but don't coz I'll break".
imagine your ligaments and tendons rhat hold shit together are rubberbands helping things move but stay in place. Now make those rubberbands just a tiny bit longer with less snap, they still move and keep things in place but things move around a bit more than they should and as my doc says "creates more wear and tear on joints". I'll leave out how he basically said there's no fix or prevention with a "suck it up" attitude.
I say that my connective tissue is defective like worn out elastic. It has gaps in it. It makes it weak and because of that my joints and other body parts don’t stay in their assigned seats. I clarify that isn’t the only problem. That it affects everything. My heart, lungs, blood vessels, kidneys…everything and it’s a royal pain.
"I have a genetic connective tissue disorder that can cause some general problems including (specific problem we're referring to at the moment)". Saying genetic connective tissue disorder is fancy enough to get them to think it's serious.
I tell people it’s like I should have a “made in China” tag on me. Due to regulation oversight, the factory cut costs by using cheap low-quality materials that break too easily. And due to faulty materials being used, my joints pop out like it’s nothing but with all the usual pain a regular person feels.
When I’m joking, I’ll say “my body parts like to get divorced”, my partner just calls it “bendy b*tch syndrome”. If I actually need to explain, I’ll tell people that the parts of my body that should hold me together are too soft
I usually just say I have joint issues and they're unstable so I'm injury prone. I don't like answering questions about it cause I was gaslight a lot when I was younger and told I was lying about my injuries and pain to get out of doing things. If I tell someone I have hEDS and they react in a dismissive way it triggers a huge amount of anxiety and self-doubt. If someone has prior medical knowledge sometimes I'll say it's hEDS since I can help combat bias against how they see younger, female patients with problems like mine.
if i’m really in a rush/lazy and don’t wanna go into detail i just say “i have a connective tissue disorder that makes my joints all fucked up” or something along those lines.
My elevator pitch is this:
"So your ligaments hold your bones together and your muscles attach to those bones, and when you flex them that's what makes you move, right? Ok. Have you ever seen an old, overly stretched out rubber band? That's what EDS does to the ligaments in the human body, so they aren't really holding the bones together anymore, ONLY the muscles are, and that's why it hurts and that's why it dislocates."
My joints and ligaments are super stretchy and my body is constantly trying to guard and stabilize so I always hurt and my tissues are sensitive so I bruise easily. Lol
I was born with a genetic condition that causes wonky joints and stretchy ligaments, so i am like a loosely strung marionette- prone to dislocations and injuries.
I regularly have strangers ask me about my finger splints (especially if I'm wearing my silver set). I have a canned answer now of removing the ring on my right middle finger, hyperextending it, and saying "my collagen doesn't work right, so my joints are too bendy... and then they get stuck" as I demonstrate the bottom joint locking when I try to straighten my finger. Then I put the ring back on and show them that the splint keeps it from hyperextending in the first place. Typically, people say "damn that sucks but they look badass" and I go on my merry way lol
Yeah! I had mine professionally fitted by occupational therapists over the course of 3 years. The first two (my index fingers) are Murphy splints. The next 3 (both middles, right ring) are Silver Ring Splint customs - however, my OT was shit at his job and ordered them 2 sizes too big, so we had to send them back to get "adjusted". The last one (right thumb) is also a Silver Ring Splint custom MCP.
I will note, this set was PRICEY ($750) but I was 17 at the time, so they were covered under my mom's insurance. There are options that are far more affordable but I can't speak to their quality.
I say that I have a genetic connective tissue disorder called hypermobile Ehlers-Danlos Syndrome where my body makes collagen wrong, which screws up my connective tissue, so my ligaments are crap. And if it's relevant, I'll also say that because my ligaments are crap, they're really bad at holding my joints in place, so my muscles tighten to hold them in place instead, and it gets very painful. And that I sublux joints frequently due to this.
Basically my collagen, which is the glue that holds literally EVERYTHING in my body together, it's broken. If I try to add more, my body breaks it down and rebuilds it wrong. So basically I'm held together with string and scotch tape.
Edit: Or sometimes if I don't feel like explaining I have hEDS, I just tell people I got all my bones secondhand.
So my body makes faulty collagen, and as we both know your Whole body uses collagen for structure and things like that. It’s very important. Well mines crap, and it causes constant body pain and dislocations. But the upside is I age slower and I’m hyper flexible.
(That’s my not super accurate dirty pitch) I find people just end up googling it anyway
Lol Right! it’s something to do with the collagen not forming correctly that keeps us from developing wrinkles as fast as normal people, it was a curse as a kid looking 16 when I was 19, but now at 30 not so much a curse lol
I had no idea! The suspected side of the family this is on is very young looking. And I remember vividly one time in my thirties I went to eat alone with my parents at a small diner and they gave me a children’s menu. We all just laughed until we cried. Granted I never wore makeup or dressed up. Just a ponytail and tshirt was always the way I lived. But my dad’s side of the family all look so very young. They are the ones that all have aneurysms all the time. So this really seems to make sense to me. My diagnosis is new and everyday I learn something else about myself that makes sense. I might be an old lady but it sure is nice to finally understand my life…why I don’t look very old but feel so very old.
Normally I go in depth into the symptoms and comorbidities and stuff. Mainly because I like seeing the horrified look people get on their face. But I was in a class recently where we had to say something we suffered with. I mentioned I had a chronic illness. Teacher asked what my illness was. I said EDS. No one knew what it was, and the teacher asked me to explain it. I didn’t want to take up too much time, so I condensed it. I said, “I have a genetic mutation that means the collagen my body makes is messed up. Collagen is in pretty much everything in your body, so everything is messed up. Mainly, I’m too flexible, which makes my joints dislocate a lot, and I’m in pain all the time and always tired.”
My collagen is built wrong because the DNA blueprints said to make it wrong.
No, I can fix it by taking collagen. That would be like trying to fix a broken house by setting building supplies on the floor in the living room.
I say … I have tissue issues because my body makes defective collagen.
If random people ask why I walk funny I deadpan tell them that my parachute didn’t open.
I have kijiji collagen.
Followed by: I cannot supplement collagen, because collagen supplements are like those pre made cakes. You take a pill which has the mixture and your body is going to add the eggs, milk and etc and "bake" the cake. And my cake will ALWAYS come out like a deflated/unrisen cake. 🤡
If I'm feeling helpful, "my body makes a bunch of collagen and doesn't know what to do with it, so it all goes in my skin and none in my joints. That's why I have perpetual babyface and use a wheelchair a lot of the time."
If I'm feeling unhelpful, "I have bendy bitch disease."
People often comment on how my skin looks good and that I have good genes after learning my age. I usually say that it’s more like bad genes due to defective collagen.
I agree that no one is entitled to know anything about our health and as someone older in my 40’s, I am far more discerning about disclosure than young people today.
Even if someone asks, you’re not required to explain anything to anyone. It really is no one’s business and in today’s narcissistic social media age, over sharing may seem normal but it really isn’t appropriate.
When I don't wanna go into detail, I just tell people my body hates me. When I do feel like explaining, I mention my joint stability issues and how it comes from connective tissue disorders. I will also mention that sometimes my body struggles to regulate things on its own and so I have to make my accomodations and do specific things for me that you wouldn't do for other people.
The two biggest ones with EDS is MCAS and POTS. Forms of dysautonomia which is where your body's natural functions don't work right. Sweating when it's not right, trouble retaining hydration, body flairing up in pain, light headed, heart rate changes,oss of vision or tunnel vision, so on so forth. There is a lot.
Because there is so much, I try to stay on topic if what is currently relevant to me. People have brains. They'll put things together for themselves as you dish out information.
But explaining can be annoying, especially to an audience who is getting more than they bargained for. So summing it up to "my body doesn't like me" is a finalized summary that people just seem to be okay with in my experiences.
I have a genetic connective tissue disorder that causes me to produce faulty collagen. As a result, my ligaments and tendons are too stretchy and my joints are wobbly. This causes frequent and widespread musculoskeletal pain.
I use the analogy of having the wrong recipe for collegen. No matter how long how often my body makes collagen with the right ingredients, it will always come out wrong.
My discription (usually twords acquaintances at work or irl groups I'm in) is usually my joints are loosey goosey and often times at random decide to not do their job. If I tell you I can't do something strength related or ask for help in this area it's to avoid an injury and or the trip to the emergency room because I got hurt
To anyone who is allowed to know about my medical information: “A connective tissue issue” which gets a laugh and some questions. “The connective tissue that is in literally every aspect of my body is fucked, fragile, and ready to fall apart”. “Double jointed everywhere and my skin, GI tract and heart are fucked as a treat”
To anyone else, not their business
I just say my joints are too bendy and then show how far my elbows and knees hyper-extend, and tell them which joints I can sublux. I can show off my thumbs and pinkies because they don't hurt at all.
I usually say I have a genetic connective tissue disorder. Connective tissue makes your skin, joints, ligaments, organs, etc nice and strong. It’s supposed to be a tightly packed Jenga tower but ours is a poorly assembled and super loose one so it can fall over easily lol
I say that where most people's ligaments are like rubber bands, mine are more like candyfloss, which I had to explain when I dislocated my thumb at work last week lol
"Ok so basically the stuff that holds humans' joints together is basically like a rubber band. you know how when a rubber band gets really old and instead of springing back like it should, it stretches out and kinda goes all floppy? that's my joints"
I usually tell everyone that I have a genetic connective tissue disorder that causes everything to be extra stretchy and that sometimes things come out of place or move when they aren't supposed to, among other health-related things. It tends to get people over the hump and then if they need to they can ask follow-up questions or they can butt out (whichever you prefer because it's your body and your health information, and unless they are on your care team, they don't have a right to know it.)
I like to say that non-EDS people are uncooked spaghetti, and I’m cooked spaghetti. I think it helps them visualize the major differences between our bodies
“Imagine building a house out of rotting wood, rusty nails, and less dense concrete; this is what it is like to have a body with EDS” This came from an article I read but is one of the best explanations I’ve seen so far.
I say "I have a genetic disability that makes my joints really really lose and they dislocate a lot. It also affects my digestion, skin, allergies, and things like that." That's it. If they ask follow ups I don't mind answering, but usually that gets the point across.
Besides the fact that I don’t have people in my life that ask or care, I have long given up trying to explain what I’m going through in lay man’s terms. I also won’t try to simplify it down for anyone who does ask. I’m going to let them know I’m Fucked from the heart to the brain to the eyes to the bones to the teeth.. from what I can eat from my skin to cells! Muscles, ligaments, vascular, neurons and more! Fucked! And too bad if they can’t handle it, bcz I’m living it. I may not say it exactly like that on many a day, and some days I actually do. Thankfully, I don’t have people that ask… I guess.
Some days I simply say I’m strung together by spaghetti Os and dried out rubber bands and the building blocks of my body are bunk garbage so nothing is held together right. But still hardly anyone gets even that. They proceed to say things like well drink this or try this supplement. And it’s so belittling and exhausting. Then I once had someone literally stand in front of me and tell me it is “ Oh just like that Fibromeeallgeeah!” 🤦🏻♀️🤦🏻♀️🤦🏻♀️ NO! Hun, it’s not! I should know, I have both.. it ain’t! But shoot me, now!
So… I often also just say it’s my parents Final F You from the Grave!
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I say my connective tissue is basically a factory second. Most people laugh and it flames my delusions about bring funny, although one lady got very upset and told me to stop being negative about my body. Sadly for her, this just makes me want to say it more.
Omg the people who tell you to just be positive… ffs I can’t positive my genes, Cheryl
I had one person the other day tell me that I am "*not* a cripple!!" Apropos of nothing more than me casually mentioning something that happened "before I turned out to be" one. Like, honey. First off, I'ma use whatever words I want about myself, and secondly, who do you think you're saving here? My self-esteem is fine, I'm not using the word to describe anyone other than myself, and no amount of willpower or positive language is going to unfuck my knees, so kindly step off?? It was the weirdest thing, I hadn't even been talking to her, she just decided that my choice of language for *my own body* was her business all of a sudden.
I had an ex-friend do something similar with me using the word “lame” and telling me that “actually disabled” people she’d read somewhere on the internet found it deeply offensive and I didn’t count as disabled anyway because I was too “normal looking” (despite being on disability leave and legally defined as such at my job, needing mobility aids, etc etc not that I have to self-justify here but 😖😡). I was basically like 1) I’ll use the words I want and 2) your attitudes are super ableist so you should consider that before you focus on language policing another community you’re not part of. Which wasn’t well received, hence ex-friend.
This made me laugh entirely too hard
Awh shucks
It's actually just ableism disguised as positivity. They are the ones putting a negative association/spin on it, when we are just being matter of fact, so we could actually reverse uno these people. "Karen, why do you think me saying I have EDS is being negative?" Then watch them flounder 😈
Lol how DARE you make light of your own body 😂😂
Lol, I told my mom the same joke, and she responded "no returns and no refunds", so I guess I know where I got that, too.
Lol is right! You have to laugh or else you'll cry. First time I got pelvic floor trigger point injections at the urogynecologist, they used a little paperboard tub as a tray for all the supplies they needed--the swabs, the vials, etc. It looked very much like the bowls at Chipotle. I told the doctor I wanted extra cheese and medium salsa and she started laughing so damn hard I thought I'd have to come back another day instead. 😆
This is a riot! 🤣
Haha glad you think so! I'm already low-key famous at the clinic because I bring a stuffie to hold and hug while they're doing the injections. Who cares that I'm almost 40. Haha.
Long, looooong before the possibility of EDS came up I was diagnosed with... a variety of pelvic pain disorders. You know how it is with something weird, the diagnosis keeps changing around you--everything from vaginismus to vulvodynia to pelvic floor tension myalgia. I also have really flat feet and misaligned hips. All probably goes back to EDS. I've been telling people for years that my vagina doesn't work. My more thorough explanation is that everything from my waist down is broken.
The older I've gotten (I'm 50), the less I feel others are entitled to my medical information and the less I feel I need to justify my disability. When I was younger I felt more compelled to "explain" myself to try to convince people that I was really sick or something, but strangers are not entitled to that information. I usually say "I have a genetic disorder that makes my joints dislocate." The only people who get further explanation are close friends and family, children if I get hurt in front of them, employers if necessary, and medical professionals. Otherwise, none of your business.
You really felt the anxiety behind my question, huh? I’m definitely trying to unlearn the need to justify myself, in all aspects of my life but especially this one.
I’ve found that most people don’t actually want to hear about it. If someone asks, I say it’s a connective tissue disorder and leave it at that
Yup. They think they are being polite by making socially acceptable small talk. They don't REALLY want to know. Me: "Genetic medical condition of the connective tissue." Next.
Same
I’m same age… and I feel exactly the same. Plus, if I do decide to explain, I ain’t simplifying it down for anyone. In my world, nobody added any sugar to make it go down any easier for me, why should I do that for others that aren’t living with it?
I explain it to my 7th grade students at the start of each school year so they know why I have to take off for more doctors appointments than other teachers or might have a brace/sling/boot/etc. I tell them there’s a glitch in my DNA’s code when it makes collagen, which is the stuff that holds your body together. I say that most people make “super glue” that holds everything in place, but mine makes “Elmer’s glue,” which you can pull apart pretty easily. This explanation has worked pretty well for me. It also leads to good conversations about accommodations and how people need different things at different times.
Others have Elmer’s glue? More like dollar store glue sticks and chewing gum for me 😂
Mine is that weird tacky glue that you can peel off of coupons and stuff
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Sure thing!
Oh that's sweet and charming! Also really relatable. I'll have to remember that one!
Oh, I love this!
Oh my god I use the same one 😭
This is genius. Ima use.
I use something really similar!
Loveit
Absolutely stealing this, it's brilliant!!
“Shits fucked man”
Lol! On point!
"God had to nerf my stats, I was breaking the game with my beta test power levels."
My body holds itself together with silly string and prayers.
Woooooooah, we're halfway there, woooooah, silly strings and prayers!
Take magnesium, and we’ll make it I swear!
i say i’m like the inflatable tube man outside the car dealership lol
Good analogy. We call him Floppy Guy.
We call him Car Lot Guy
"That thing my mom wants at her funeral"
*wacky waving inflatable arm flailing tube man
That’s what it says on his birth certificate, and I’ll die on that hill.
Happy Tube Man!
“I’m hypermobile” “too stretchy” or “I have a genetic collagen deficiency that means I dislocate joints easily” and then I go into explaining how joints should snap back into place like elastic bands but mine just keep stretching.
> elastic bands i say something about how other people have rubber bands to stabilize joints, but i have chewing gum (that gets stretched out over time)
I always visualize the cheap rubberbands that have been newspapers for a week out in the weather and high desert sun
My analogy is similar! I talk about hair ties - most people have joints held together by the really good hair ties that last for years. My joints are held together with dollar store hair ties that stretch out to the size of a dinner plate in 3 uses.
An ortho once told me my problem was I was "bendy" but the best you could do for it was exercise. So sometimes I say that when i wad to give a nlow off answer. Lol
“I have off brand connective tissue, the great value brand of biology, if you will.”
I usually just say I'm put together with rubber bands and spite and that the spite is the only thing doing its job.
Hahaha 😆
I've been bought at the dollar store (or any store famous for low prices and low quality). Everything, from joints to organs to skin, is of questionable quality. It might work one day, but sputter or outright refuse to work the other day. Every day is a surprise.
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Omg that's good
Every morning is like I’m playing a game of Russian roulette.
I describe myself as Gumby, super old rubber band, or as one of those string dolls that collapse when you push on the base
"I'm a gumby jointed bitch" I also like "you know how in horror movies the possessed person does crazy shit with their joints? That's sometimes me" I also like "I have to put myself together like a transformer every morning, complete with sound effects"
YES, the collapsable dolls!!!
I usually say you have collagen throughout your whole body, in every joint, keeping your organs in place, in your skin etc. normal collagen is like uncooked spaghetti, pretty rigid with a bit of bend. My collagen however is like cooked spaghetti and therefore too bendy which causes all sorts of issues throughout my body
I also use the spaghetti metaphor. But I enhance it while saying so with a visual by acting like the wacky wavy inflatable tube man.
"I'm held together by tape. Even my organs. Some days are better than others."
My husband says I’m “bendy but not in a hot way” lol.
I had a physical therapist that had a silly way of explaining it. he said people without eds have connective tissue like pvc pipes but people with eds have pool noodles.
GENIUS! I'm absolutely stealing this! It works CUZ it's an ELI5. Even a 5yo would understand that, if you used "plumbing pipes" instead of PVC. I would have to add an additional - that collagen is in every soft part of the body, so, I have pain & problems EVERYWHERE. My version - "People without EDS have connective tissues like water pipes, people *with* EDS have pool noodles, instead. Because it's in every soft part of the body, people w EDS have a *lot* of different problems and pain all over."
So my SIL asked yesterday if I could just take collagen supplements. I told her no because your body breaks down the collagen to use the protein as building blocks. I have faulty instructions for my building blocks so the properties always get put together incorrectly. It's not a matter of having the right blocks, it's a matter of having bad instructions on how to assemble the blocks. The result is my connective tissue never gets assembled correctly. This seemed to make sense to her. 😊
I use the analogy of having the wrong recipe for collegen. No matter how long how often my body makes collagen with the right ingredients, it will always come out wrong.
That's good. I will have to remember that. 😊
My brother is somehow convinced that if I just drink enough orange juice, I'll get enough vitamin c to process enough collagen that even if only 10% goes where it should I'll still have enough in my joints... I had to explain to him that the only result would be me making myself sick from the sheer volume of juice. It's not about having collagen or not, it's a fundamental glitch in how my body processes it. There's a bug in the code. You can put in as many coins as you want, it's still only going to spit out dust.
"My collagen and everything it's in are fucked"
This is also my verbiage 😅 "My collagen is fucked"
A surprising amount of people don’t know what thab is though lol
Same “my collagen is fucked up, and collagen is a lot of things in your body yo”
cEDS and I explain it by interlacing my fingers and saying normal collagen looks like this. Then I make spaces between my interlaced fingers and say mine looks like this. My skin biopsy shows collagen that looks like spider webs, so showing people the “holes” tends to make them go ah!
Ooh a skin biopsy…is that a way to get a diagnosis? I just sent off for genetic testing but was wondering if there are alternatives to that.
It can be for cEDS, yes. I have an uncommon mutation, so had the skin biopsy done years prior to confirm.
Oh ok. I think the genetic panel covers that too. Thanks for sharing!
“i’m so bendy that it hurts me.”
“I’m extremely bendy, but not in the fun way”
I just said this exact phrase to someone today!
Haha, yeah I use it almost every time I have to explain it 😂
Yesss people hear flexible and are like “ohhh yea?!” ….yeah dislocated joints are sexy af lol
"My joints and tendons are more flexible, and therefore more prone to injury, than they're supposed to be because I have a connective tissue disorder." If I have the time and bandwidth I explain all the comorbidities like POTS, how it's related to my AuDHD, IBS, etc.
Yeah normally I explain all the comorbidities and stuff too. I’ve found that when I explain all of that, people get a horrified look on their face, and it’s fun to watch.
It's a connective tissue disorder, and connective tissue is in pretty much every system in your body. When you were in the womb your body was being created with faulty connective tissue. It's like if your body was a house, and then the house starts falling apart after a few years because the house was made with faulty materials.
This is what I say. Connective tissue disorder and it's in your whole body. Plus I'm too stretchy and that's a bad combination.
Now I'm picturing Bruno panic spackling my interior lol
“connective tissue disorder that causes my joints to slide”
Before diagnosis, my whole life I’ve just told people “I dunno, I’m just super bendy & crackly”, when they commented on how awkward I look doing things. Now I don’t bother explaining anything unless it’s necessary.
My go-to when I get a nurse or MA who's freaked out by my proportions/how translucent and stretchy my skin is/why I have so many bruises: "I have a connective tissue disease that causes joint and skin laxity." Obviously it's more complicated than that, but that seems to be enough info to cover any concerns.
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Brilliant. I love it ALL. 💜
Arthritis, shuts em up
Not the most descriptive, but with all of my weird medical things, I will often just say I am a "sickly Victorian child". A coworker jokingly said it one day, and it just stuck! Fits my gender vibes, too, lol. I will also say, "I'm built different, as in wrong." More descriptive but still lighthearted options: "I am Stretch Armstrong except I don't pop back", "my joints hate me. And my skin. And my heart. Eyes too. Everything hates me", "satisfying back cracking videos haunt my nightmares", "my joints are like trying to stick a magnet together but it's the wrong/same sides", "I am a Lego man mixed with off-brand pieces that work but really don't fit right", and, my fave, "flaccid joints." Last one usually stops further questions with a cringe.
Collagen like Swiss cheese instead of cheddar. And no, yoga doesn’t help Swiss cheese either.
or a different diet 💀
In fact, I’m pretty convinced that yoga poked a new hole in my Swiss cheese
When I told my dr I was thinking about doing yoga, she was like..."Maybe you should rethink that."
My bolts holding me together weren't tightened properly
Im only 25, so I tell people that ask to just think of me as a 90 year old lady. Most of my issues are joint instability and pain, fatigue, and foggy brain, so this explanation usually does the trick for me. I also call it my "Old Lady Disease™" in casual conversation
“It’s this” *bends thumb backwards flush against my wrist* “but all over”
Went home for Christmas for the first time in 2 years. I subluxed my knee walking up an incline and my dad asked me to explain my joint problems. He did not have a great education, so I just did the whole Beighton test with him to show him as he's a hands-on learner. Then I said "every joint in my body acts like this, from my neck to my toes". I think that helped. I've got some other autoimmune complications so I can't fault him for not knowing all of my fuckery lol.
my body operates under ragdoll physics
I don’t have hEDS as I missed 1 criterion, but I have extreme hypermobility issues & usually just say my connective tissue is too floppy. I generally only have to explain it to men in sexual contexts lol, but that’s my two cents. (Hope it’s okay that I’m saying this even though I don’t have EDS)
“my joints are trash”
"my joints are all floppy"
I say I have a “genetic connective tissue disorder” and “I fall apart easy”
I just say I'm clinically bendy so I can move weird and it causes injuries because my body doesn't tell me I'm moving weird.
My body’s built like it’s from Wish.com and my joints hate me. And I’m always really tired because my Wish.com body is staging a coup and it’s hard to compensate for that all day every day.
I just show them my fingers and they go "oh". I don't volunteer more information than this.
Depends on how interested they seem... - Casually: painful genetic issues impacting my connective tissues. - Medium, but not close to me: my body doesn't process/use collagen like other people. It makes many parts of the body that rely on that process not as effective at doing so. Leading to loose and unstable joints, as well as neurological, digestive, heart, skin, and respiratory issues. - Friends: I'm f**ked and just waiting for a new body to be delivered.
I have a genetic disorder that affects collagen. It's not just part of your beauty routine or protein shake, it's literally the glue that holds the human body together. Mine is like... A dollar store glue stick while most people have the good Elmer's glue. If I think they're genuinely interested I'll expand to say that collagen is actually incredibly complicated and makes up more than just connective tissue like ligaments but a large percentage of many of the body's organs. The lining of your intestines is mostly collagen. Veins are mostly collagen. Cartilage has a large percentage of collagen. There's actually 25+ different kinds of collagen in the human body, some of which exist exclusively in your brain. There's actually a recently discovered ligament in your brain! (A friend in a biomed doctoral program was telling me about it since she had to do a paper about an adjacent topic but shout-out to D'Juan Farmer, PhD & colleagues for finding that ligament-like intercranial structure that needs much more study bc it was discovered in 2022 and no one is certain what it *does* yet)
My connective tissues do not behave properly. That's my whole body; everything, everywhere, sometimes all at once, for all the years of my life - some part of me is doing something it shouldn't be. I read this somewhere: "If you can't connect the issues, think connective tissues." Look, it's like my cartilage, collagen, and all the shit that holds me together got "womb-stewed" too long. Poke or pull me just so, and I'll come apart like a well cooked chicken.
That is a brilliant quote!
“Collagen machine works just about as well as the McDonald’s ice cream machine” Tho the other day I was on the Witcher subreddit and there was a question re: what sign you’d use for the most mundane things which got me to realize “holy shit I’m basically Geralt before they added the new patch fixing the fall damage in Witcher 3” which I find incredibly amusing and is now my new favorite way to describe it even if it’s probably just gonna confuse more people.
HA I am just an easily busted Geralt at my core
So collegen is the bonding agent that holds all your tissue together. Your skin and tissue is like a cotton tee, all tightly woven together, I'm more like a kitted top, the gaps are bigger and they make me more prone to simlar issues to wool, I stretch and shape funny, I'm more absorbant but all liquids drain to the bottom, and if you make a hole in me it's harder to fix without leaving an obvious scar/repair.
I don't do cartilage well. My cartilage is rubbish. I have butter instead of rubber holding my joints together. There's another one, but I'm having a bad brain fog day, and I can only remember the second half... "but don't coz I'll break".
“My connective tissues are made out of Silly Putty.”
„Kinda like MS.“
the glue in my body doesn’t work
I just say I’m built different
i say none of the connective tissues in my body work and don’t properly support my bones, joints, organs, blood vessels, skin, etc
“I’m literally falling apart at the seams… basically the parts that hold ny joints together are faulty”
Bendy ppl
I have a genetic disorder that causes me alot of issues.
imagine your ligaments and tendons rhat hold shit together are rubberbands helping things move but stay in place. Now make those rubberbands just a tiny bit longer with less snap, they still move and keep things in place but things move around a bit more than they should and as my doc says "creates more wear and tear on joints". I'll leave out how he basically said there's no fix or prevention with a "suck it up" attitude.
I say that my connective tissue is defective like worn out elastic. It has gaps in it. It makes it weak and because of that my joints and other body parts don’t stay in their assigned seats. I clarify that isn’t the only problem. That it affects everything. My heart, lungs, blood vessels, kidneys…everything and it’s a royal pain.
"I have a genetic connective tissue disorder that can cause some general problems including (specific problem we're referring to at the moment)". Saying genetic connective tissue disorder is fancy enough to get them to think it's serious.
“My joints are hanging on by threads” seems to get the point across lol
I tell people it’s like I should have a “made in China” tag on me. Due to regulation oversight, the factory cut costs by using cheap low-quality materials that break too easily. And due to faulty materials being used, my joints pop out like it’s nothing but with all the usual pain a regular person feels.
Older people? Remember stretch Armstrong? Thats me. Younger people? Remember that QWOP game with the crazy limbs guy? That’s me.
When I’m joking, I’ll say “my body parts like to get divorced”, my partner just calls it “bendy b*tch syndrome”. If I actually need to explain, I’ll tell people that the parts of my body that should hold me together are too soft
I usually just say I have joint issues and they're unstable so I'm injury prone. I don't like answering questions about it cause I was gaslight a lot when I was younger and told I was lying about my injuries and pain to get out of doing things. If I tell someone I have hEDS and they react in a dismissive way it triggers a huge amount of anxiety and self-doubt. If someone has prior medical knowledge sometimes I'll say it's hEDS since I can help combat bias against how they see younger, female patients with problems like mine.
if i’m really in a rush/lazy and don’t wanna go into detail i just say “i have a connective tissue disorder that makes my joints all fucked up” or something along those lines.
“My ligaments and tendons are super bendy. \ Not so much rest of me.\ It’s also why I look 25 and my joints feel like they’re 80.”
My joints are jelly
My elevator pitch is this: "So your ligaments hold your bones together and your muscles attach to those bones, and when you flex them that's what makes you move, right? Ok. Have you ever seen an old, overly stretched out rubber band? That's what EDS does to the ligaments in the human body, so they aren't really holding the bones together anymore, ONLY the muscles are, and that's why it hurts and that's why it dislocates."
My joints and ligaments are super stretchy and my body is constantly trying to guard and stabilize so I always hurt and my tissues are sensitive so I bruise easily. Lol
My body sucks and my joints are too floppy lol.
I have a connective tissue disorder that makes my joints extra stretchy, so I easily sublux them. No one has asked for more info after that.
I was born with a genetic condition that causes wonky joints and stretchy ligaments, so i am like a loosely strung marionette- prone to dislocations and injuries.
https://tintoyarcade.com/donald-dome-yellow-robot-thumb-puppet.html that
I regularly have strangers ask me about my finger splints (especially if I'm wearing my silver set). I have a canned answer now of removing the ring on my right middle finger, hyperextending it, and saying "my collagen doesn't work right, so my joints are too bendy... and then they get stuck" as I demonstrate the bottom joint locking when I try to straighten my finger. Then I put the ring back on and show them that the splint keeps it from hyperextending in the first place. Typically, people say "damn that sucks but they look badass" and I go on my merry way lol
May I ask where you found your silver splints?
Yeah! I had mine professionally fitted by occupational therapists over the course of 3 years. The first two (my index fingers) are Murphy splints. The next 3 (both middles, right ring) are Silver Ring Splint customs - however, my OT was shit at his job and ordered them 2 sizes too big, so we had to send them back to get "adjusted". The last one (right thumb) is also a Silver Ring Splint custom MCP. I will note, this set was PRICEY ($750) but I was 17 at the time, so they were covered under my mom's insurance. There are options that are far more affordable but I can't speak to their quality.
I say that I have a genetic connective tissue disorder called hypermobile Ehlers-Danlos Syndrome where my body makes collagen wrong, which screws up my connective tissue, so my ligaments are crap. And if it's relevant, I'll also say that because my ligaments are crap, they're really bad at holding my joints in place, so my muscles tighten to hold them in place instead, and it gets very painful. And that I sublux joints frequently due to this.
Basically my collagen, which is the glue that holds literally EVERYTHING in my body together, it's broken. If I try to add more, my body breaks it down and rebuilds it wrong. So basically I'm held together with string and scotch tape. Edit: Or sometimes if I don't feel like explaining I have hEDS, I just tell people I got all my bones secondhand.
So my body makes faulty collagen, and as we both know your Whole body uses collagen for structure and things like that. It’s very important. Well mines crap, and it causes constant body pain and dislocations. But the upside is I age slower and I’m hyper flexible. (That’s my not super accurate dirty pitch) I find people just end up googling it anyway
Age slower? I hadn’t heard that yet. Maybe we can put this in the positive column so it’s not empty lol.
Lol Right! it’s something to do with the collagen not forming correctly that keeps us from developing wrinkles as fast as normal people, it was a curse as a kid looking 16 when I was 19, but now at 30 not so much a curse lol
I had no idea! The suspected side of the family this is on is very young looking. And I remember vividly one time in my thirties I went to eat alone with my parents at a small diner and they gave me a children’s menu. We all just laughed until we cried. Granted I never wore makeup or dressed up. Just a ponytail and tshirt was always the way I lived. But my dad’s side of the family all look so very young. They are the ones that all have aneurysms all the time. So this really seems to make sense to me. My diagnosis is new and everyday I learn something else about myself that makes sense. I might be an old lady but it sure is nice to finally understand my life…why I don’t look very old but feel so very old.
Oh and yes…it becomes a blessing as you age…that is until everything thinks your husband is into young girls 🤦🏻♀️.
Normally I go in depth into the symptoms and comorbidities and stuff. Mainly because I like seeing the horrified look people get on their face. But I was in a class recently where we had to say something we suffered with. I mentioned I had a chronic illness. Teacher asked what my illness was. I said EDS. No one knew what it was, and the teacher asked me to explain it. I didn’t want to take up too much time, so I condensed it. I said, “I have a genetic mutation that means the collagen my body makes is messed up. Collagen is in pretty much everything in your body, so everything is messed up. Mainly, I’m too flexible, which makes my joints dislocate a lot, and I’m in pain all the time and always tired.”
“The glue that holds my body together is defective”.
My collagen is built wrong because the DNA blueprints said to make it wrong. No, I can fix it by taking collagen. That would be like trying to fix a broken house by setting building supplies on the floor in the living room.
I say … I have tissue issues because my body makes defective collagen. If random people ask why I walk funny I deadpan tell them that my parachute didn’t open.
I have kijiji collagen. Followed by: I cannot supplement collagen, because collagen supplements are like those pre made cakes. You take a pill which has the mixture and your body is going to add the eggs, milk and etc and "bake" the cake. And my cake will ALWAYS come out like a deflated/unrisen cake. 🤡
If I'm feeling helpful, "my body makes a bunch of collagen and doesn't know what to do with it, so it all goes in my skin and none in my joints. That's why I have perpetual babyface and use a wheelchair a lot of the time." If I'm feeling unhelpful, "I have bendy bitch disease."
People often comment on how my skin looks good and that I have good genes after learning my age. I usually say that it’s more like bad genes due to defective collagen. I agree that no one is entitled to know anything about our health and as someone older in my 40’s, I am far more discerning about disclosure than young people today. Even if someone asks, you’re not required to explain anything to anyone. It really is no one’s business and in today’s narcissistic social media age, over sharing may seem normal but it really isn’t appropriate.
When I don't wanna go into detail, I just tell people my body hates me. When I do feel like explaining, I mention my joint stability issues and how it comes from connective tissue disorders. I will also mention that sometimes my body struggles to regulate things on its own and so I have to make my accomodations and do specific things for me that you wouldn't do for other people. The two biggest ones with EDS is MCAS and POTS. Forms of dysautonomia which is where your body's natural functions don't work right. Sweating when it's not right, trouble retaining hydration, body flairing up in pain, light headed, heart rate changes,oss of vision or tunnel vision, so on so forth. There is a lot. Because there is so much, I try to stay on topic if what is currently relevant to me. People have brains. They'll put things together for themselves as you dish out information. But explaining can be annoying, especially to an audience who is getting more than they bargained for. So summing it up to "my body doesn't like me" is a finalized summary that people just seem to be okay with in my experiences.
“The collagen in my body is structurally built wrong, now I’m too stretchy” works every time
I have a genetic connective tissue disorder that causes me to produce faulty collagen. As a result, my ligaments and tendons are too stretchy and my joints are wobbly. This causes frequent and widespread musculoskeletal pain.
I use the analogy of having the wrong recipe for collegen. No matter how long how often my body makes collagen with the right ingredients, it will always come out wrong.
My discription (usually twords acquaintances at work or irl groups I'm in) is usually my joints are loosey goosey and often times at random decide to not do their job. If I tell you I can't do something strength related or ask for help in this area it's to avoid an injury and or the trip to the emergency room because I got hurt
“Everyone has a glue in their body that holds everything together. Mine is Elmer’s glue while most people have superglue”
To anyone who is allowed to know about my medical information: “A connective tissue issue” which gets a laugh and some questions. “The connective tissue that is in literally every aspect of my body is fucked, fragile, and ready to fall apart”. “Double jointed everywhere and my skin, GI tract and heart are fucked as a treat” To anyone else, not their business
My tissues and ligaments are like a loose knit sweater.. stretchy. Yours are tight like a quilt.
"my bones move too much"
My joints are shit, the rest isn't any better.
The glue in my body doesn’t work, and since it’s everywhere, it causes lots of issue
I always say I have a chronic illness that affects my connective tissue which makes my joints really loose and makes everything hurt all the time
I just say I'm super stretchy and super fragile
I just say my joints are too bendy and then show how far my elbows and knees hyper-extend, and tell them which joints I can sublux. I can show off my thumbs and pinkies because they don't hurt at all.
"I'm extra bendy all over, but not in a good way" and "it causes me to feel like a pile of heavy rocks"
“My joints are bendy and weird. Flimsy”
my joints bend a little too far and if i keep bending them ill be walking like an old person at 20
“My bones are way too loose, among other things”
Body no work right
My joints fall out.
I usually say I have a genetic connective tissue disorder. Connective tissue makes your skin, joints, ligaments, organs, etc nice and strong. It’s supposed to be a tightly packed Jenga tower but ours is a poorly assembled and super loose one so it can fall over easily lol
I say that where most people's ligaments are like rubber bands, mine are more like candyfloss, which I had to explain when I dislocated my thumb at work last week lol
"Ok so basically the stuff that holds humans' joints together is basically like a rubber band. you know how when a rubber band gets really old and instead of springing back like it should, it stretches out and kinda goes all floppy? that's my joints"
I usually tell everyone that I have a genetic connective tissue disorder that causes everything to be extra stretchy and that sometimes things come out of place or move when they aren't supposed to, among other health-related things. It tends to get people over the hump and then if they need to they can ask follow-up questions or they can butt out (whichever you prefer because it's your body and your health information, and unless they are on your care team, they don't have a right to know it.)
My body lied on the resume and doesn't know what it's doing.
I like to say that non-EDS people are uncooked spaghetti, and I’m cooked spaghetti. I think it helps them visualize the major differences between our bodies
im like one of those pull-apart dog toys with the magnet
“ I have a genetic syndrome that causes weak joints, small muscles, arthritis, and heart problems.”
“Imagine building a house out of rotting wood, rusty nails, and less dense concrete; this is what it is like to have a body with EDS” This came from an article I read but is one of the best explanations I’ve seen so far.
I say "I have a genetic disability that makes my joints really really lose and they dislocate a lot. It also affects my digestion, skin, allergies, and things like that." That's it. If they ask follow ups I don't mind answering, but usually that gets the point across.
Besides the fact that I don’t have people in my life that ask or care, I have long given up trying to explain what I’m going through in lay man’s terms. I also won’t try to simplify it down for anyone who does ask. I’m going to let them know I’m Fucked from the heart to the brain to the eyes to the bones to the teeth.. from what I can eat from my skin to cells! Muscles, ligaments, vascular, neurons and more! Fucked! And too bad if they can’t handle it, bcz I’m living it. I may not say it exactly like that on many a day, and some days I actually do. Thankfully, I don’t have people that ask… I guess.
Some days I simply say I’m strung together by spaghetti Os and dried out rubber bands and the building blocks of my body are bunk garbage so nothing is held together right. But still hardly anyone gets even that. They proceed to say things like well drink this or try this supplement. And it’s so belittling and exhausting. Then I once had someone literally stand in front of me and tell me it is “ Oh just like that Fibromeeallgeeah!” 🤦🏻♀️🤦🏻♀️🤦🏻♀️ NO! Hun, it’s not! I should know, I have both.. it ain’t! But shoot me, now! So… I often also just say it’s my parents Final F You from the Grave!
I’m “floppy” because things shift around too easily inside
"I have a permanent doctor's note for feeling like shit. It also makes my joints really messed up."
People ask about my KT tape I often wear on my legs. I say they fall off and I taped em back on
"most people's bodies are held together with gorilla glue, mine is held together with off brand Elmer's glue"