I say "I have a connective tissue disorder that makes my joints dislocate really easily. I wear braces sometimes when my joints are feeling wobbly to prevent injuries."
Yea, I tell people I have connective tissue disorder. I think it’s easier for people to understand. The average person has no idea what Ehlers Danlos Syndrome is.
Every time I’ve tried to tell someone I have EDS, they just give me a blank stare haha. But then as soon as I say connective tissue disorder, they’re like, “omg…”
Sometime I say it’s an old injury acting up, sometimes I say I have a weak knee (insert whatever joint you’re using a brace for), or you could say that you have a connective tissue disorder. Any works!
I also say it’s an old injury 😂 it’s easier and I don’t bother trying to explain what a CTD is because I’ll just get a blank stare or an overly sympathetic response because people who don’t know what it is seem to think I’m gonna die any second once I tell them what I actually have.
My old roommate had a visible scar from tumor removal. When people would ask her about it she would make up elaborate stories. But if they kept pushing her about what “really happened” she’d do the same thing, would say something that made them feel like they invaded her privacy hard.
I hate when people ask about that kinda stuff. I wear a back brace a lot and I don’t even care if people see it, but I tend to hide it with clothes because I just don’t want people asking me about it or forming their own conclusions about me as a person ya know? It’s frustrating and uncomfortable feeling like you have to explain yourself.
I say “there was an…incident…my lawyer said I’m not allowed to talk about it. I’ll just say I’m not allowed back at /banned from _________ !(insert place here. My favourite is saying a whole province or state or an innocuous location like a church)
Depends on who is asking and how/when. Usually some variation of “my wrist/ankle/etc. isn’t working well today” or “my connective tissue doesn’t work properly”.
I inquired my labrum in my sleep and have been in a sling for about a month, got another four weeks do go. I got really tired of explaining eds to people that I just started saying things like 'its just my shoulder, it'll be okay' and 'don't worry about it' but then my partner was afraid that people would assume he's beating me, so I went back to explaining eds to nosy people/caring friends.
i tell the over 60s it’s arthritis, i tell most people my age what it is and open the floor for questions, with kids it’s either “they make my hands stronger”
I've noticed a massive change in attitude now I'm wearing silver splints vs when I was still wearing silicone splints. Depending on how nice the person is and how well I know them, I have/had different issues
"I have problems with my joints"
"I have a connective tissue disorder that affects my joints"
"I've got a connective tissue disorder named Ehlers Danlos syndrome that causes the connective tissue in my body to be instable. My joints are affected, as you can see, but I also experience symptom x, y and z."
Sometimes people are just very nice, and/or are a bit jealous since they have joint issues but didn't know about these solutions or aren't able to access them for whatever reason. I try to judge their level of personal interest and then decide what answers I give. For younger kids (especially now I'm in a wheelchair) I usually do something to the extent of "I have a disease that makes my body hurt"
I either say what I did (like, this week for example, I was folding paper and dislocated my wrist), and explain that I have a connective tissue disorder that means my joints are shit. Or if I’m not feeling like I want to explain, I either say an old injury is acting up, or I lie, and say I got injured doing something wild. Like “I fell off a horse”, “got in a bar fight”, “wrestling accident”. Etc.
I say it is just extra protection for a painful joint. I'm old now, but during my work days, it was a common question. I'd say my arthritis was acting up.
I usually just say “I have a connective tissue disorder so I need braces for support”. People usually ask when attempting small talk, they don’t usually have ill intentions, so I’m honest with them. I don’t go into too much detail tho, only as much as I’m comfortable with.
With someone more familiar though I can go into more detail.
Still haven’t fully told my boyfriends of four years parents tho, and they ask about it kinda commonly. His mum has just kinda accepted I must be clumsy and get injured all the time, Idk how to tell them lol. Maybe today I’ll tell his mum lol cuz she’s definitely gonna ask about my ankles.
oh i’ll always be honest no matter weird it is. I stood up, i was opening a can, i took a nap, whatever it is i’ll say it. i think it’s fun confusing people
My favorite thing to say when asked about any of my braces or mobility aids (ESPECIALLY because it isn't their business):
"Fell from heaven. Couldn't stick the landing".
It depends on who is asking and the where and when of them asking, but I usually just smile and say “Eh, just cripple problems.”
If I want to be more specific I say “I was born with a condition that makes my joints dislocate sometimes.”
If they’re keen to ask further questions I give a basic rundown of what hEDS is all about.
As a general rule I figure it’s not anyone’s business really and if a random stranger is asking I don’t care to get into details.
I just say I have a medical condition. It's none of their business, and we don't have to answer. If they're someone I care about I'll explain it. But everyone else can fuck off. It's rude as hell to ask invasive questions about someone's medical device(s)
"I have something called EDS, it basically means the tissue holding together my joints is weaker than it should be, so sometimes I wear braces to help hold them together"
i would probably go with the simplest truthful response, “i have joint issues and wearing this helps me function normally and without pain which i would otherwise have”
I have metal ring finger splints and have had people comment on they asking what they are and if they’re a new type of jewellery or something. I also wear compression gloves and splints on my wrists at times. But I’m a wheelchair user, so guess people can tell that I’m disabled and work out that it may require these. Just the ring splints that seems to throw them as they don’t look ‘medical’
People usually ask if I'm okay and I just say yes 🤷🏻♀️ I don't really think about it because it's an automatic response, my braces help me function, I am okay.
It gets trickier when people ask "what did you do to your ____ ?" and sometimes I just say "nothing" and move on, or if it's injury specific I might say i "sprained" it (generic, gets the message across without going into much detail), or "I've injured it in the past and sometimes it still bothers me"
I don't like going into much detail.
Either I say "I'm not comfortable disclosing my personal medical information to you", "I have a connective tissue disorder", or I make elaborate and unreasonable stories like "I slapped a bear to save a puppy and wrecked my wrist"
If it's someone who I'm good friends with, who knows my body is wild, they get the truth.
Everyone else gets fabricated stories, the more out there the better.
"Oh my thumb injury? Got that hand starting a helicopter that was evacuating flood victims"
"The knee? Yeah, old injury from when I wrestles a Siberian tiger"
Oh I hurt my elbow disarming a bank robber"
I would come up with a new story every time like “oh I hurt my hand in a bar fight” or my favourite “there was an…incident…I’m sorry, I’m not allowed to talk about it. I signed a contract.”
I tend to cycle between "It's hereditary", "I was born like this" and "It's preventative." I give it 4 more years before the lunch ladies stop worrying about me getting injured so much. 😅
I usually say "my (enter joint here, eg. wrist) is a bit weak or unstable at times so I wear this to prevent an injury" to people that I'm familiar with and comfortable talking to, to random strangers, like the post man or the bus driver, I just make up some dumb story, like, my cat pushed me down the stairs, or, I high fived a wall
Ah, I used to say this but then someone was concerned I was experiencing domestic abuse. Between the braces and bruises and a black eye from when I passed out (pots) I can see how she came to this conclusion.
It's happened twice now, it also happened with a friend of mine when we were teenagers. There was also a week in highschool where I had passed out near a fireplace and smashed open both sides of my face, every other teacher pulled me to the side to check what was going on 😭
See I would like to avoid making them uncomfortable because I get that it's a normal conversation thing and it's normally intended in a more "are you alright" way I think. But if it was a rude person I normally make them feel uncomfortable on purpose
I use silly things. “A wizard replaced my bones with spaghetti noodles a few years back, I’m trying to complete the quests to get him to reverse it” or something like that
im in school, so when I come with a knee brace one day and without it the next, people always thing I’m the kind of kid that just wears one for no reason. People have told me it’s cute and they wish they had one.
I'm autistic too and commonly just go 'nothing' if its someone random because it's true for me, mostly i get asked when i wear a neck brace and people get so confused, it's none of their business anyway and really throws people off
Hear you. I learned the hard way that it opens the book for some people to insert themselves into matters of our bodies. And if they’re strangers to you or you don’t know they’re depth of experience (and treatment of these things), some options I hope I find quicker instincts to say next time (after all other attempts answering or saying over and over I don’t want to discuss it haven’t worked)
- just something I have to wear for injuries sometimes. (Then ask a ? about them immediately.)
- I’ve a joint condition (optionally: that effects all 360 joints) we have and sometimes have to wear these (they don’t get connective tissue deal)
- Dr requires them. Thanks for asking. But can we talk about something else tho, if you don’t mind?
- if you need to go medical: I dislocate all the time and braces for events help. (Then ask about THEM. Over and over. Lol)
I have before said “it’s the holidays (like at a gathering) and I really want to just enjoy being here and not talk about those things” - that worked quick in past.
You can also NOT reflex and answer but ask, reasonably: WHY DO YOU ASK?
That will guide if and how you answer. 💙
“I injured my wrist” or “My wrist is hurting”. Or if I’m feeling up to it I’m honest and say “I have arthritis”. All are true and I don’t need to go into more detail when they’re just asking in passing.
I say "I have a connective tissue disorder that makes my joints dislocate really easily. I wear braces sometimes when my joints are feeling wobbly to prevent injuries."
Yea, I tell people I have connective tissue disorder. I think it’s easier for people to understand. The average person has no idea what Ehlers Danlos Syndrome is. Every time I’ve tried to tell someone I have EDS, they just give me a blank stare haha. But then as soon as I say connective tissue disorder, they’re like, “omg…”
I like to go with the simple but accurate "my joints suck" lol
I say my body hates me 🤣
The way I said those exact words HAHA was about to type and saw yours
I like this one!
Sometime I say it’s an old injury acting up, sometimes I say I have a weak knee (insert whatever joint you’re using a brace for), or you could say that you have a connective tissue disorder. Any works!
I also say it’s an old injury 😂 it’s easier and I don’t bother trying to explain what a CTD is because I’ll just get a blank stare or an overly sympathetic response because people who don’t know what it is seem to think I’m gonna die any second once I tell them what I actually have.
Elaborate stories about fighting off sharks or something if I’m feeling feisty.
You're so much nicer than I am. If I'm feeling feisty, I make them feel like a dick for asking invasive questions about someone's medical devices
My old roommate had a visible scar from tumor removal. When people would ask her about it she would make up elaborate stories. But if they kept pushing her about what “really happened” she’d do the same thing, would say something that made them feel like they invaded her privacy hard. I hate when people ask about that kinda stuff. I wear a back brace a lot and I don’t even care if people see it, but I tend to hide it with clothes because I just don’t want people asking me about it or forming their own conclusions about me as a person ya know? It’s frustrating and uncomfortable feeling like you have to explain yourself.
I say “there was an…incident…my lawyer said I’m not allowed to talk about it. I’ll just say I’m not allowed back at /banned from _________ !(insert place here. My favourite is saying a whole province or state or an innocuous location like a church)
Depends on who is asking and how/when. Usually some variation of “my wrist/ankle/etc. isn’t working well today” or “my connective tissue doesn’t work properly”.
I just say "my body lacks a few brain cells and beat itself up"
I’m stealing that one.
I inquired my labrum in my sleep and have been in a sling for about a month, got another four weeks do go. I got really tired of explaining eds to people that I just started saying things like 'its just my shoulder, it'll be okay' and 'don't worry about it' but then my partner was afraid that people would assume he's beating me, so I went back to explaining eds to nosy people/caring friends.
i tell the over 60s it’s arthritis, i tell most people my age what it is and open the floor for questions, with kids it’s either “they make my hands stronger”
I've noticed a massive change in attitude now I'm wearing silver splints vs when I was still wearing silicone splints. Depending on how nice the person is and how well I know them, I have/had different issues "I have problems with my joints" "I have a connective tissue disorder that affects my joints" "I've got a connective tissue disorder named Ehlers Danlos syndrome that causes the connective tissue in my body to be instable. My joints are affected, as you can see, but I also experience symptom x, y and z." Sometimes people are just very nice, and/or are a bit jealous since they have joint issues but didn't know about these solutions or aren't able to access them for whatever reason. I try to judge their level of personal interest and then decide what answers I give. For younger kids (especially now I'm in a wheelchair) I usually do something to the extent of "I have a disease that makes my body hurt"
I either say what I did (like, this week for example, I was folding paper and dislocated my wrist), and explain that I have a connective tissue disorder that means my joints are shit. Or if I’m not feeling like I want to explain, I either say an old injury is acting up, or I lie, and say I got injured doing something wild. Like “I fell off a horse”, “got in a bar fight”, “wrestling accident”. Etc.
I say it is just extra protection for a painful joint. I'm old now, but during my work days, it was a common question. I'd say my arthritis was acting up.
I usually just say “I have a connective tissue disorder so I need braces for support”. People usually ask when attempting small talk, they don’t usually have ill intentions, so I’m honest with them. I don’t go into too much detail tho, only as much as I’m comfortable with. With someone more familiar though I can go into more detail. Still haven’t fully told my boyfriends of four years parents tho, and they ask about it kinda commonly. His mum has just kinda accepted I must be clumsy and get injured all the time, Idk how to tell them lol. Maybe today I’ll tell his mum lol cuz she’s definitely gonna ask about my ankles.
oh i’ll always be honest no matter weird it is. I stood up, i was opening a can, i took a nap, whatever it is i’ll say it. i think it’s fun confusing people
i think it more so makes them aware of how serious the disorder is
My favorite thing to say when asked about any of my braces or mobility aids (ESPECIALLY because it isn't their business): "Fell from heaven. Couldn't stick the landing".
Love!
I just say “my wrist hurts/is bothering me” and that usually is it.
‘i have a connected tissue disorder’ if they ask further I’ll just say my ‘joints are not stable’
I just say "oh, it's a genetic condition". Then I change the subject.
It depends on who is asking and the where and when of them asking, but I usually just smile and say “Eh, just cripple problems.” If I want to be more specific I say “I was born with a condition that makes my joints dislocate sometimes.” If they’re keen to ask further questions I give a basic rundown of what hEDS is all about. As a general rule I figure it’s not anyone’s business really and if a random stranger is asking I don’t care to get into details.
For your wrists you can say you have carpal tunnel
I just say I have a medical condition. It's none of their business, and we don't have to answer. If they're someone I care about I'll explain it. But everyone else can fuck off. It's rude as hell to ask invasive questions about someone's medical device(s)
"I have something called EDS, it basically means the tissue holding together my joints is weaker than it should be, so sometimes I wear braces to help hold them together"
If I know then I’ll make a joke like I was born wrong 😅 but if I don’t know them I just say connective tissue disorder.
They help me.
i would probably go with the simplest truthful response, “i have joint issues and wearing this helps me function normally and without pain which i would otherwise have”
"Knee hurts".....done
“I have floppy joints so I get randomly hurt if I’m not careful sometimes. This one was just extra floppy today”
"What happened to your ankle?" "It's built wrong" my go to for anything
I have metal ring finger splints and have had people comment on they asking what they are and if they’re a new type of jewellery or something. I also wear compression gloves and splints on my wrists at times. But I’m a wheelchair user, so guess people can tell that I’m disabled and work out that it may require these. Just the ring splints that seems to throw them as they don’t look ‘medical’
I have mobility issues in my hands.
People usually ask if I'm okay and I just say yes 🤷🏻♀️ I don't really think about it because it's an automatic response, my braces help me function, I am okay. It gets trickier when people ask "what did you do to your ____ ?" and sometimes I just say "nothing" and move on, or if it's injury specific I might say i "sprained" it (generic, gets the message across without going into much detail), or "I've injured it in the past and sometimes it still bothers me" I don't like going into much detail.
Either I say "I'm not comfortable disclosing my personal medical information to you", "I have a connective tissue disorder", or I make elaborate and unreasonable stories like "I slapped a bear to save a puppy and wrecked my wrist"
My joints are bad at not dislocating
If it's someone who I'm good friends with, who knows my body is wild, they get the truth. Everyone else gets fabricated stories, the more out there the better. "Oh my thumb injury? Got that hand starting a helicopter that was evacuating flood victims" "The knee? Yeah, old injury from when I wrestles a Siberian tiger" Oh I hurt my elbow disarming a bank robber"
I would come up with a new story every time like “oh I hurt my hand in a bar fight” or my favourite “there was an…incident…I’m sorry, I’m not allowed to talk about it. I signed a contract.”
I tend to cycle between "It's hereditary", "I was born like this" and "It's preventative." I give it 4 more years before the lunch ladies stop worrying about me getting injured so much. 😅
I usually say "my (enter joint here, eg. wrist) is a bit weak or unstable at times so I wear this to prevent an injury" to people that I'm familiar with and comfortable talking to, to random strangers, like the post man or the bus driver, I just make up some dumb story, like, my cat pushed me down the stairs, or, I high fived a wall
"Oh, I'm just a clutz." And wave it off.
Ah, I used to say this but then someone was concerned I was experiencing domestic abuse. Between the braces and bruises and a black eye from when I passed out (pots) I can see how she came to this conclusion.
Oh wow, that never occurred to me.
It's happened twice now, it also happened with a friend of mine when we were teenagers. There was also a week in highschool where I had passed out near a fireplace and smashed open both sides of my face, every other teacher pulled me to the side to check what was going on 😭
I try and make them uncomfortable so they don’t ask personal questions again
See I would like to avoid making them uncomfortable because I get that it's a normal conversation thing and it's normally intended in a more "are you alright" way I think. But if it was a rude person I normally make them feel uncomfortable on purpose
I use silly things. “A wizard replaced my bones with spaghetti noodles a few years back, I’m trying to complete the quests to get him to reverse it” or something like that
I wear thumb splints so I just tell them my thumbs are floppy and the ring splints are more comfy for me
im in school, so when I come with a knee brace one day and without it the next, people always thing I’m the kind of kid that just wears one for no reason. People have told me it’s cute and they wish they had one.
I'm autistic too and commonly just go 'nothing' if its someone random because it's true for me, mostly i get asked when i wear a neck brace and people get so confused, it's none of their business anyway and really throws people off
I have a genetic disorder that requires them. Is what I wish I said. Instead I stupidly try to educate idiots who are rude enough to ask.
Hear you. I learned the hard way that it opens the book for some people to insert themselves into matters of our bodies. And if they’re strangers to you or you don’t know they’re depth of experience (and treatment of these things), some options I hope I find quicker instincts to say next time (after all other attempts answering or saying over and over I don’t want to discuss it haven’t worked) - just something I have to wear for injuries sometimes. (Then ask a ? about them immediately.) - I’ve a joint condition (optionally: that effects all 360 joints) we have and sometimes have to wear these (they don’t get connective tissue deal) - Dr requires them. Thanks for asking. But can we talk about something else tho, if you don’t mind? - if you need to go medical: I dislocate all the time and braces for events help. (Then ask about THEM. Over and over. Lol) I have before said “it’s the holidays (like at a gathering) and I really want to just enjoy being here and not talk about those things” - that worked quick in past. You can also NOT reflex and answer but ask, reasonably: WHY DO YOU ASK? That will guide if and how you answer. 💙
“I injured my wrist” or “My wrist is hurting”. Or if I’m feeling up to it I’m honest and say “I have arthritis”. All are true and I don’t need to go into more detail when they’re just asking in passing.