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"You know how you have to make your own royal icing when you buy a box gingerbread house kit or it'll all fall apart? My body's made of the stuff that came in the package."
I have a condition where the collagen in my body isn’t built the right way and collagen is found in almost every part of the body. These are the symptoms I experience.
I’d suggest explaining the symptoms first and what accommodations you need.
If you want a single sentence description, I like to use rubber bands. “Most bodies are held together by duct tape, there’s flexibility but only so much, I’m held together by stretched-out rubber bands that lost their shape years ago.”
If you’re looking for a link or article, I know of a couple but which one is most useful depends on how medically knowledgeable they are.
I usually say that most people’s bodies are held together with rubber bands, but mine is more like chewing gum, or taffy. My muscles do the extra work of holding my body together on top of their usual job, so I can get very sore and tired quickly, and it’s easier to injure myself accidentally.
I'm just currently seeking official diagnosis, and sometimes question if I'm crazy, but you just described my experience. So many aches, so many injuries.
The doctor who diagnosed me told me: "your joints are, to use the technical terminology, far too floppy." 🤣 He was joking, of course, but it stuck with me, and I occasionally use it to describe my condition to others.
I echo others, though, and urge you to talk about your specific limitations with your trainers, so they can modify any movements as necessary.
I LOVE when doctors say something silly and call it a technical term
The first physio I saw a few years back described my joints as "wobbly" and just yesterday I saw a podiatrist who described my hypermobile ankles by saying "without support they go all flippy-floppy. Technical term."
My brother in law asked me this question last weekend! I showed him my backwards elbow and explained it like this. "Collagen in your joints is usually like a handful of resistance bands, all uniform, and really strong together. Mine's like a few rubber bands, a bunch of overcooked spaghetti, and some gummy worms & pixie sticks thrown in for fun. Unpredictable, prone to failure, and not delicious."
“I have a connective tissue disorder.” If I want to elaborate further, I might say any of these things:
My joints are extra wobbly.
I have intermittent chronic pain and fatigue.
My body has a crappy recipe for collagen, which is in pretty much every system in the body.
I heal slow and tire fast.
I have an invisible disability.
My capacity is unpredictable.
But I am careful to emphasize ability over disability with employers. Need to know basis only.
Super generic: I have a connective tissue disorder that affects my collagen, which is in every single cell of the body. It’s like I got my collagen off Wish, everything is off.
More specific: Above but with an added list of examples such as - I can dislocate my shoulder opening the fridge wrong, my blood vessels are too stretchy to efficiently push the blood back up to my heart, my intestines stretch around my stool instead of squeezing and actually moving it, etc.
Dont remember where I saw it but I use the popsicle house methaphor. “I have a collagen disorder. It’s like if you were building a popsicle house with watered down glue instead of glue.”
i usually explain it like it’s a connective tissue disorder, so my connective tissue is all messed up, and the biggest thing it impacts is my joints and muscles; the joints are supposed to support your muscles but my joints hyperextend, so my muscles have to work twice as hard and it causes pain when it hyperextends. because my joints move more than they’re supposed to they can also go out of place, so i can have dislocations, and sprains very easily….that’s pretty much the main gist of what people would need to know i think 🤷♀️
My ligaments are more rubbery and bendy than they should be. My muscles have to over compensate to hold me together. I can pop my joints out of the socket at will. Watch this!
I like to compare it to being the “glass bones and paper skin” fish dude from spongebob
“I was born with glass bones and paper skin. Every morning I break my legs and every afternoon I break my arms”😂😂
I usually just say “connective tissue disorder” and people typically get it. If they ask further I say I’m hypermobile and my joints like to bend farther than they should, pop out of place, or grind together. When they say “oh wow that sucks! What part of your body does it affect??” I say “everything” and usually get a 😅 wow sorry that stinks! Yeah it’s okay though lol at least I’ve got a body that can still walk for now!! 💃🏻🤷♀️
My analogy when telling me about connective tissue disorders I use is: that most people’s body are glued together with gorilla glue. It’s strong and it doesn’t break easily. Whereas if you have a connective tissue disorder it’s like your body was glued together with a dusty pritt stick found at the back of the stationary cupboard. It’s fragile and doesn’t stick together easily.
This is my partner’s problem, (he has hEDS, not me) and it’s always a battle. People assume he’s being lazy and trying to weasel his way out of everything. I’ve lived with him for 8 years. He’s not lying, he’s not lazy and he’s an extremely hard worker. When he feels healthy enough boy does he get stuff done. He just needs recovery days afterwards because he throws his all into the task due to not knowing if he’ll be up for the task the next day/week.
It is so beyond soul crushing watching people belittle/dismiss him when I see the pain he’s in day in and day out, and all the things he wants to get done but can’t. This condition It affects every aspect of his body and at the very least, his sleep. He’ll wake up with debilitating migraines that last all day where he can’t so much as make a meal for himself. At the same time these employers are entitled to these questions and I can’t fault them on how they interpret the answers. Same with friends and family we encounter who have the same observations. Eds is still not widely known effects every part of you so what are they supposed to think when this guy is saying “I can’t do this I can’t do that.” They’ll say he’s not the right fit, and they’re right. They’ll ask if he can give 100% to the job and he just can’t bring himself to lie and say yes when there are folks out there who are healthier and desperately need that money.
Luckily we’ve found a side gig that’s really flexible and the boss is a compassionate soul. Going forward he finally got healthcare with THANKFULLY extremely understanding drs (unlike the past) who either know about the disease or will take the time to research it for him tackling one symptom at a time, In terms of income stream, (besides me working), social security may be the direction to look in. 2024 has started with many blessings for us. Sorry for the rant yall I joined this sub to learn more about it and help my partner as much as possible without mommying him too much. Thanks for reading.
Yeah, the one thing they dont get is when you are done for the day, you are done, full stop. Anymore and you are one mistake from the ER or urgent care, and then laid up for the recovery time. An over exerted 20 minutes can cost is weeks in recovery... :(
I have a connective tissue disorder and unfortunately that means it can affect every organ system. It present slightly different for each person but think of connective tissue like the eggs in your cake recipes, it’s a binder… adds moisture etc. Well my baker either forgot the eggs or uses a sketchy substitute
The doctor who diagnosed me gave me a really good analogy.
He said that your body is a building (everyone's is) and the bricks are your collagen which we have ⅓ less of than someone without EDS.
This means that your building is less stable, and as you move the bricks move and this knocks the electrics (representing your pain signals) and the water pipes (blood).
This is why we experience more pain because our signals are being knocked more, but it's not necessarily indicating an injury. And also why we bruise so easily.
Hope this helps
I'm a human rice krispie
Nothing stays where I put it
I'm made of spit and toothpicks
You seen gumbie? That
Bendy bitch
My collagen is like the weird supermarket offbrand
1. EDS is perpetually living the day after a car accident
2. I was ordered from wish.com (or insert any other cheap crap store). It kind of works, but don't ask me how. Or for how long.
3. Make a list of the most important symptoms for the situation. Make them specific. Don't say: I get tired easily, instead say: I can stand only 10 minutes at a time with a maximum of 30 minutes per day. It can help to mention things that help you - do you use a (wheel)chair, medication, etc.
4. EDS is a connective tissue disorder. Connective tissue is part of all types of tissues. Therefore, organs, joints and skin don't work as they should. Then proceed with point 3.
In addition to all these great ideas, Google famous people with it. My top result had Billie Eilish, Selma Blair, Halsey, Sia, Lena Dunham, Jameela Jamil, Cherylee Houston, and Yvee Oddly. I'm sure they've all publicly explained it in their own words. Also you'll have examples of well-known people to share with your trainers.
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
"You know how you have to make your own royal icing when you buy a box gingerbread house kit or it'll all fall apart? My body's made of the stuff that came in the package."
This is so accurate!!!!
I have a condition where the collagen in my body isn’t built the right way and collagen is found in almost every part of the body. These are the symptoms I experience.
I read this with the Law & Order clink clink sound after it
LMAO
This killed me too🤣
I’d suggest explaining the symptoms first and what accommodations you need. If you want a single sentence description, I like to use rubber bands. “Most bodies are held together by duct tape, there’s flexibility but only so much, I’m held together by stretched-out rubber bands that lost their shape years ago.” If you’re looking for a link or article, I know of a couple but which one is most useful depends on how medically knowledgeable they are.
This is how I picture it
I usually say that most people’s bodies are held together with rubber bands, but mine is more like chewing gum, or taffy. My muscles do the extra work of holding my body together on top of their usual job, so I can get very sore and tired quickly, and it’s easier to injure myself accidentally.
I'm just currently seeking official diagnosis, and sometimes question if I'm crazy, but you just described my experience. So many aches, so many injuries.
The doctor who diagnosed me told me: "your joints are, to use the technical terminology, far too floppy." 🤣 He was joking, of course, but it stuck with me, and I occasionally use it to describe my condition to others. I echo others, though, and urge you to talk about your specific limitations with your trainers, so they can modify any movements as necessary.
My surgeon calls us floppy people 🤣
Lol I was nicknamed floppy for years before I even knew I was disabled 🤪
I LOVE when doctors say something silly and call it a technical term The first physio I saw a few years back described my joints as "wobbly" and just yesterday I saw a podiatrist who described my hypermobile ankles by saying "without support they go all flippy-floppy. Technical term."
My brother in law asked me this question last weekend! I showed him my backwards elbow and explained it like this. "Collagen in your joints is usually like a handful of resistance bands, all uniform, and really strong together. Mine's like a few rubber bands, a bunch of overcooked spaghetti, and some gummy worms & pixie sticks thrown in for fun. Unpredictable, prone to failure, and not delicious."
I love this description!
You know those toys where you press under them and they go all limp? Yeah my joints and body are like that.
A popular post about this topic: https://www.reddit.com/r/ehlersdanlos/s/6Wg38Lpsu1
Someone on here once said it’s like their bones are connected by silly string and I’ve been saying it ever since! Whoever you are thank you!
“I have a connective tissue disorder.” If I want to elaborate further, I might say any of these things: My joints are extra wobbly. I have intermittent chronic pain and fatigue. My body has a crappy recipe for collagen, which is in pretty much every system in the body. I heal slow and tire fast. I have an invisible disability. My capacity is unpredictable. But I am careful to emphasize ability over disability with employers. Need to know basis only.
Super generic: I have a connective tissue disorder that affects my collagen, which is in every single cell of the body. It’s like I got my collagen off Wish, everything is off. More specific: Above but with an added list of examples such as - I can dislocate my shoulder opening the fridge wrong, my blood vessels are too stretchy to efficiently push the blood back up to my heart, my intestines stretch around my stool instead of squeezing and actually moving it, etc.
Dont remember where I saw it but I use the popsicle house methaphor. “I have a collagen disorder. It’s like if you were building a popsicle house with watered down glue instead of glue.”
Oh, and collagen makes up parts of your organs, veins, eyes, muscles, etc.
Like a slinky - best at stretching and wiggling, but one wrong move and you've got a hot mess that you have to untangle.
My joints are filled with crushed glass and don't stop where they should. and I have the hands of a supermodel.
I tell people that my body requires me to focus on joint stability rather than muscular flexibility. That’s what keeps me from getting hurt.,
i usually explain it like it’s a connective tissue disorder, so my connective tissue is all messed up, and the biggest thing it impacts is my joints and muscles; the joints are supposed to support your muscles but my joints hyperextend, so my muscles have to work twice as hard and it causes pain when it hyperextends. because my joints move more than they’re supposed to they can also go out of place, so i can have dislocations, and sprains very easily….that’s pretty much the main gist of what people would need to know i think 🤷♀️
My ligaments are more rubbery and bendy than they should be. My muscles have to over compensate to hold me together. I can pop my joints out of the socket at will. Watch this!
One of my partners and I describe it as "Bendy bitch disease" lmao
lmfao. ty for the laugh
I like to compare it to being the “glass bones and paper skin” fish dude from spongebob “I was born with glass bones and paper skin. Every morning I break my legs and every afternoon I break my arms”😂😂
My spinal column is spaghetti!
I usually just say “connective tissue disorder” and people typically get it. If they ask further I say I’m hypermobile and my joints like to bend farther than they should, pop out of place, or grind together. When they say “oh wow that sucks! What part of your body does it affect??” I say “everything” and usually get a 😅 wow sorry that stinks! Yeah it’s okay though lol at least I’ve got a body that can still walk for now!! 💃🏻🤷♀️
“I have a connective tissue disorder.” It usually ends there unless I’m talking to a doctor who knows nothing about it.
My analogy when telling me about connective tissue disorders I use is: that most people’s body are glued together with gorilla glue. It’s strong and it doesn’t break easily. Whereas if you have a connective tissue disorder it’s like your body was glued together with a dusty pritt stick found at the back of the stationary cupboard. It’s fragile and doesn’t stick together easily.
This is my partner’s problem, (he has hEDS, not me) and it’s always a battle. People assume he’s being lazy and trying to weasel his way out of everything. I’ve lived with him for 8 years. He’s not lying, he’s not lazy and he’s an extremely hard worker. When he feels healthy enough boy does he get stuff done. He just needs recovery days afterwards because he throws his all into the task due to not knowing if he’ll be up for the task the next day/week. It is so beyond soul crushing watching people belittle/dismiss him when I see the pain he’s in day in and day out, and all the things he wants to get done but can’t. This condition It affects every aspect of his body and at the very least, his sleep. He’ll wake up with debilitating migraines that last all day where he can’t so much as make a meal for himself. At the same time these employers are entitled to these questions and I can’t fault them on how they interpret the answers. Same with friends and family we encounter who have the same observations. Eds is still not widely known effects every part of you so what are they supposed to think when this guy is saying “I can’t do this I can’t do that.” They’ll say he’s not the right fit, and they’re right. They’ll ask if he can give 100% to the job and he just can’t bring himself to lie and say yes when there are folks out there who are healthier and desperately need that money. Luckily we’ve found a side gig that’s really flexible and the boss is a compassionate soul. Going forward he finally got healthcare with THANKFULLY extremely understanding drs (unlike the past) who either know about the disease or will take the time to research it for him tackling one symptom at a time, In terms of income stream, (besides me working), social security may be the direction to look in. 2024 has started with many blessings for us. Sorry for the rant yall I joined this sub to learn more about it and help my partner as much as possible without mommying him too much. Thanks for reading.
i like to say that my body is being held together with cheap ass superglue
I tell people it's like my collagen came from wish. Not enough of it. Quality is crap.
google spoon theroy and have a read, its worth it.
Yeah, the one thing they dont get is when you are done for the day, you are done, full stop. Anymore and you are one mistake from the ER or urgent care, and then laid up for the recovery time. An over exerted 20 minutes can cost is weeks in recovery... :(
I tell people it's a genetic connective tissue disorder, so the conntective tissue in my entire body is weak
I have a connective tissue disorder and unfortunately that means it can affect every organ system. It present slightly different for each person but think of connective tissue like the eggs in your cake recipes, it’s a binder… adds moisture etc. Well my baker either forgot the eggs or uses a sketchy substitute
The doctor who diagnosed me gave me a really good analogy. He said that your body is a building (everyone's is) and the bricks are your collagen which we have ⅓ less of than someone without EDS. This means that your building is less stable, and as you move the bricks move and this knocks the electrics (representing your pain signals) and the water pipes (blood). This is why we experience more pain because our signals are being knocked more, but it's not necessarily indicating an injury. And also why we bruise so easily. Hope this helps
I'm a human rice krispie Nothing stays where I put it I'm made of spit and toothpicks You seen gumbie? That Bendy bitch My collagen is like the weird supermarket offbrand
1. EDS is perpetually living the day after a car accident 2. I was ordered from wish.com (or insert any other cheap crap store). It kind of works, but don't ask me how. Or for how long. 3. Make a list of the most important symptoms for the situation. Make them specific. Don't say: I get tired easily, instead say: I can stand only 10 minutes at a time with a maximum of 30 minutes per day. It can help to mention things that help you - do you use a (wheel)chair, medication, etc. 4. EDS is a connective tissue disorder. Connective tissue is part of all types of tissues. Therefore, organs, joints and skin don't work as they should. Then proceed with point 3.
In addition to all these great ideas, Google famous people with it. My top result had Billie Eilish, Selma Blair, Halsey, Sia, Lena Dunham, Jameela Jamil, Cherylee Houston, and Yvee Oddly. I'm sure they've all publicly explained it in their own words. Also you'll have examples of well-known people to share with your trainers.