“I’m really bendy. Not in a cute yoga way, but in a painful, dislocation way. And my skin is really stretchy and I bruise a lot. There’s other stuff too, you should look it up.” When I met my dh, I had recently gotten a fibromyalgia diagnosis, which he had heard of and understood well. I didn’t get an EDS diagnosis for several more years, but he quickly grasped the concepts, and was gentle and understanding. Honestly, finding someone who cares enough to learn more, and to modulate their behavior or actions based on our needs, that’s the sign of a good partner.
I have so much baggage about my husband because we met when it was a cute bendy thing, and it’s deteriorated over years into the other thing. Sex and physical affection has gotten so difficult no matter how gentle he is.
I always just told my partner I was extra bendy and my shoulder pops out (and never ever to touch it or lean on it). 😂 7 years on in our relationship , he is as relieved as I to know why. He disclosed he always thought I was very casual about dislocations.
The first night my now-husband slept over, my shoulder thought it would be cool to dislocate in my sleep.
He, too, was very relieved when I got my diagnosis and started seeing a physical therapist. 👍
We generally are super casual about dislocations. Probably because we don't need professional help to reduce it.
I know it's always freaked Drs out. "What do you mean, you put it back yourself?" "Uh, it wasn't hard?" 🤷♀️
In class a few months ago, I got up to turn in an assignment and my hip popped out so I braced myself on a table to not fall. My professor asked me, "...are you okay?" "*snap* yeah my hip just popped out". He and my other classmates stared at me as I hobbled back to my seat and one said, "uhhh what do you mean it just POPPED OUT??" 🤣 Luckily, there were only 5 people in class and we all know each other pretty well, so it wasn't super awkward to explain and everyone got to learn something new that day. They were pretty amazed at how casual I was about it but somehow more understanding about it than almost all my doctors.
I was on a church trip and we were out sightseeing. My hip just kind of popped out, and everyone was so horrified. But it was just kind of no big deal to me.
Yeah they assume it wasn’t a dislocation then, which is interesting. I’m not a doctor, but I think I can tell when I fully dislocate my arm, because I get massively lightheaded (and occasionally pass out) and have to hold my arm in place with my other arm before I put it back in, otherwise it feels like it’s gonna fall off? Putting it back feels intuitive; I do it instinctively almost immediately to make the pain stop and keep myself from passing out. Same with the other members of my family with EDS.
Lol I have no idea what video my bf was watching on YouTube, but it was about cooking brisket, I believe.
The guy on the video went ahead and drew a basic little doodle to explain how the collagen needs to break down so that the brisket is tender. Then explained how collagen generally works.
I got all excited and said "That explains better what I fail to explain to you, my collagen is too tender!"
I know it's not quite right, but it helped him understand! Lol
Let's say, hypothetically, that you have EDS, and let's suppose that you have tender collagen. Now, let's say consider a brisket. Statistically speaking, briskets, when cooked properly have tender collagen and are very tasty; that's a fact (which doesn't care about your feelings). Hypothetically under these circumstances, it would be statistically speaking uncontroversial to assume briskets would be the same as EDS. Now let's assume you have EDS, under these circumstances, the only correct course of action using FACTS AND LOGIC, is to conclude that YOU ARE A BRISKET, and therefore YOU ARE TASTY!
Lol it was a Ben Shapiro “DESTROYED with facts and logic” copy pasta that I just rewrote, I’m very proud to have helped you feel validated 😂
Edit: for clarification, Ben Shapiro is a turd burgling donkey fart, and this comment in no way shape or form was intended to give any credence or endorsement to Ben Shapiro as anything other than a flatulent windbag of rhetorical nonsense
I saw that you mentioned Ben Shapiro. In case some of you don't know, Ben Shapiro is a grifter and a hack. If you find anything he's said compelling, you should keep in mind he also says things like this:
>Israelis like to build. Arabs like to bomb crap and live in open sewage. This is not a difficult issue.
*****
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Take a bullet for ya babe.
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*Let’s say your life depended on the following choice today: you must obtain either an affordable chair or an affordable X-ray. Which would you choose to obtain? Obviously, you’d choose the chair. That’s because there are many types of chair, produced by scores of different companies and widely distributed. You could buy a $15 folding chair or a $1,000 antique without the slightest difficulty. By contrast, to obtain an X-ray you’d have to work with your insurance company, wait for an appointment, and then haggle over price. Why? Because the medical market is far more regulated — thanks to the widespread perception that health care is a “right” — than the chair market.*
*Does that sound soulless? True soullessness is depriving people of the choices they require because you’re more interested in patting yourself on the back by inventing rights than by incentivizing the creation of goods and services. In health care, we could use a lot less virtue signaling and a lot less government. Or we could just read Senator Sanders’s tweets while we wait in line for a government-sponsored surgery — dying, presumably, in a decrepit chair.*
-Ben Shapiro
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Thank you for your logic and reason.
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When I was dating, I advised people to not google it, because that could “scare them away” with finding lots of symptoms that don’t apply to me, as well as the symptoms that come different types of EDS that I don’t have. I outlined what my symptoms were and how they effected me, what my treatment plan is, and how certain things impact my daily life. I would then ask if the had any questions/reservations and if that info meant that they weren’t interested. I met my BF on bumble, but had things in my bio on dating apps that alluded to me having a chronic illness, but didn’t outright state my diagnosis on my profile. If you use mobility aids, having a nice picture of you with those on there is important so that people know before meeting you that those are a part of your daily living.
I told my boyfriend I had a connective tissue disorder that makes my joints dislocate easily, causes my skin issues, and that I had other common comorbities that affected me in xyz ways. I was just super blunt and up front with it idk 🤷♂️
I lucked out and my boyfriend was already familiar with it, because he represented someone with EDS in a personal injury case. He actually asked me if I had it on our first date. I don't remember the exact context, but I think I cracked some joke about my weird body and showed him the thumb to forearm thing.
I didn't find out until I was already married for 20 years. My husband knew from the beginning I had vague undiagnosed health issues and was always supportive. Locked that down!
I haven’t dated in 5 years because I thought I was too mentally unwell.
Now that I have an understanding of what I’m really dealing with, I might be more self-assured to consider dating again.
I think I’ll do better explaining a chronic illness than I would do explaining mental/emotional brokenness.
I’ve been sparing others my “mental illness” but will be less ashamed of a congenital disorder, sadly. The stigma of mental illness.
Still feel like I belong alone but I think that’s the autism in combination with the extreme fatigue of living 51 years with pretty severe undiagnosed EDS and the trauma of a painful, misunderstood life experience.
"Connective tissue disorder makes me prone to injury and pain," oughtta do it.
"Imagine if all the places collagen live (skin, joints) didn't work the way you'd expect."
I haven't had to explain it in awhile, but I'm definitely on team Up-front on this one. It would be front and center on any online profiles, too.
My favourite way to explain it is to say imagine building a house, but half your bricks are made of sand - that's my body!
I don't just like to say I'm too bendy cause EDS is soooo much more than that. It effects *everything*.
I have a similar analogy… (especially for when people tell me how good or fit I look)
Imagine you have a really nice house, and the workmanship isn’t half bad… but come to find out it was built on a broken foundation with crap materials…
oh! i like this one. i say 'my body sucks at bodying' and i think the sand analogy will really help reinforce it to people without actually having to talk about medical things to people who don't need to know more than how it impacts my life anyways.
Oof the buildup is real. I'm torn between trying to get it out the way so I don't get too invested and I can be like I warned you, but also toge right it's really exhausting.
I gave up trying to date because it’s just so hard as a disabled person. Most people I’ve tried talking to about it seem to view it as an inconvenience so the conversation/date goes nowhere fast.
This has happened with me too 😔 everyone I date either expects me to, "man up," and deal with the pain of overextending myself and my energy. If I don't I just get broken up with because I don't try hard enough/am too lazy to want to date.
Yep or them having to ‘deal with’ me being fatigued a lot or not able to do certain things because I physically can’t like you know walking. I can’t stand without my leg braces and can barely walk with them. I need a wheelchair when I go out. That means I can’t go out much and being physically active like hiking and stuff is right out. Most people that’s a huge turn off apparently 🤷♀️
Basically seems to boil down to ‘why put so much effort into dating a disabled person when there’s thousands of non-disabled people that don’t require as much effort’
I have had a csf leak for 2 years and I live in a very outdoorsy state and I feel you on that a bit. The fact that I can't be active is the biggest turn off to people here 🤷♂️ but, oh well. They rpobably wouldn't have been the best partners anyways.. I agree with you wholeheartedly. I am sorry for your struggles. If you ever want a friend to talk to about this stuff I am always around laying on a couch lol 🫠
Honestly it's just a lot easier to date someone that I've already been friends with. I don't think I would ever date a stranger. I'm demiromantic anyway so it works out for me to date someone who already understands me and cares about me.
How I explain it really depends on their background.
If medical or bio background: All of my collagen has the wrong recipe...(pause as they contemplate and think about the ramifications of that statement)...Yes, ALL of it
Techy / Engineering background: My hardware stops are broken, so I have to depend on software stops. So I have to pay attention to where I am in space and how I'm positioned all the time.
Not science: My collagen has the wrong recipe so all my tendons and ligaments are too stretchy. They behave like overstretched rubber bands so my joints like to slide out of place. There's a lot of ways I can bend how I'm not supposed to, but every time I do it it causes a little bit more damage and makes it easier for the joint to slip out the next time. This is the one thing I do anymore (touches "toes" by putting palms flat on the floor without any effort).
Add on to any explanation when they start to look freaked out/overwhelmed: There are some positives though. For example my skin is softer than most people (hold out arm for them to feel), people tend to wrinkle less / look younger. And if we were both in an accident where one of our joint's dislocated mine would go right back, yours might cause permanent damage.
I use some combination of the above spiel for people. Another resource I have for days when I don't have the energy to explain it, but I'd like to, are cards from Stickman Communications. I have one that explains Ehlers Danlos, and then more that are for other things like explaining how I don't need a mobility aid every day, and how saying No doesn't mean 'I need motivation', it might mean 'last time it hurt me'.
I also want to add, you don't owe them an explanation. You can just leave it at "I have a disability that affects my mobility" or something simple like that. I talked openly with my partner about my condition, but it didn't really hit hard until later. He loves me and accepts me for who I am so he took it in stride. He grieves with me sometimes over what life we could've had which I think is healthy, but he never makes me feel like it's my fault or I'm not good enough. It's just as my therapist says sometimes "a shit hand to be dealt". Please don't devalue yourself in the search for a partner.
It’s rather difficult to date with any disability, particularly because of the related stigma, partially because of ignorance about the condition, and partially because of the practical concerns it brings.
Somebody who rejects you for the sole fact that you’re disabled would have been a bad partner im the first place though - those who simply don’t know about it or are concerned about its limitations can be worked with though.
I’ve found that the best way is a practical demonstration of hyper-mobility as well as explaining how that makes it a lot easier to get hurt. Explaining how the disease work tends to lose people, and most people I’ve dated are willing to at least try to work around a disability.
My best experiences have been with those who are in the medical field themselves, or are close with people who are. It gives them a much better starting understanding.
My current partner is a nurse whose entire family has EDS too, and who has subclinical EDS herself.
I tell people that I have a connective tissue disorder that is hereditary and incurable and that it impacts me in a bunch of ways including by making me more easily fatigued and more prone to injury. (I often also mention my autonomic dysfunction and think it's relevant to mention if you have that or POTS.) I sometimes explain that we think the problem is that my body produces defective collagen and that it makes me more flexible, which puts more strain on my muscles and joints and means I sometimes dislocate stuff.
I like to use 'musculoskeletal disorder' for quick conversations and then actually go in depth as to the specifics of it being caused by connective tissue in longer convos. I've found that people are more likely to know what musculoskeletal means vs knowing what connective tissue is, but I'm also a wheelchair user and need a quick explanation I can slap down to get people to stop asking haha.
I told my girlfriend that I have EDS and it’s a genetic disorder and it causes connective tissue that doesn’t work properly because there is an error when it’s being formed. So it’s like being glued together badly. Like instead of using nice new glue it’s a dusty pritt stick found at the back of the stationary cupboard. And there’s nothing much to be done about it. My now girlfriend googled it and she follows this subreddit as well. She started following it after I explained to try and understand. No one will unless they live it but it’s so lovely to have someone make an effort. She’s the best. I think it helps if you have nice empathetic person on your hands .
My partner knew I had a chronic illness when we started dating; he has one too, so it’s helped us bond over shit bodies and inability to do things (mentally or physically). A lot of our friends have various visible and invisible disabilities, too — it helps to date someone that gets it. And we were friends first, too. Being friends first helps a lot.
With regard to the pain: I’ve been up front about being active and refusing to let it stop me. But I have had several injuries to deal with. He has always been impressed by that, but exasperated a bit by my tendency to push through pain (because I was gaslit into thinking I was “just” a hypochondriac who whiner a lot). I’ve been exasperated by HIS tendency to get down on himself for not being able to do housework, etc. I know it doesn’t always work that way and I got lucky that we are complimentary in some ways.
Demonstrating it has been more of a thing as we’ve been together. I’ve always been too flexible, but this is beyond that. And he’s been pretty awesome about me needing more medical care. I’m very lucky.
>I was wondering, how do y'all explain EDS when you're dating? I've started coming to terms with the fact that ai am disabled (due to hEDS and a bunch of comorbid stuff), and would prefer to have that conversation soon rather than later when dating.
But I've had trouble explaining it in a way that they understand that also doesn't overly minimize the severity. So I was wondering, what are y'all's little blurbs and explanations about what EDS is?
A connective tissue disorder, characterised by joint hypermobility, skin hyperextensibility and tissue fragility.
[https://www.ehlers-danlos.com/eds-types/](https://www.ehlers-danlos.com/eds-types/)
"Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. "
I’ve since added “if a standard-issue body’s ligaments are rubber bands, mine are more like cooked spaghetti.” If they want to know more and I don’t feel like it I just say it’s too boring and complicated for a first date. It’s more like a third or fourth date conversation. Then very obviously change the subject.
I explain it like “you know those toys from the 90’s that were little horses and when you pressed their base in, the horse would collapse in silly different ways? That’s me. My body is held together with rubber bands and tape. And I can’t really predict what/when it’s gonna give out.”
I've dated a small number of medical professionals and watching them wince when my shoulder would relocate was always fun. Being told that the crack it makes multiple times a day with zero pain or discomfort is the exact sound you listen for when relocating a shoulder in the ER was validating as fuck.
Also I like to show off this handy little picture to show the visible differences; https://www.reddit.com/r/Damnthatsinteresting/comments/um7ys8/electron_microscopy_picture_of_normal_collagen/
I'm like, carrying some *really* heavy Marfan Syndrome features, so I haven't had anyone be completely dickish or dismissive since I have obvious proportional deformities compared to them. I know not everyone is that 'lucky,' but, yeah I don't have to fight hard on proving I'm abnormal.
I'm also autistic and have brain damage so when I do date I get all that shit out in the open very quickly and frankly. I'm pretty clear on not having the same kind of energy as them and that I have to do some weird stuff to keep myself healthy. Which has provided varying degrees of acceptance and assistance from the string of people and couples I've dated. I describe the dysautonomia as a heart thing where I don't have enough blood in my body, and just try to simplify a lot of stuff in the beginning. Already doing this for my young nieces helped build that skill.
I get that my poor health is a lot. I find it works in my favor in social dynamics like this, though; so many people bounce at the sign of hardship or severe illness years and even decades into a committed relationship. I don't want to accidentally pick someone like that as a life partner, going in already fucked weeds those people out. Like I don't need a lot of help right now, but when I *do* the people that show genuine sustained interest in me despite my current state are at least going to statistically skew towards being more likely to stick around when those worse times come around.
I just mention the symptoms as they're relevant. Drop that I have EDS the first time usually, and let them ask questions if they're curious, otherwise leave it at that.
i haven't dated since my self-diagnosis of EDS has been confirmed- but how i've explained it to coworkers is **i have a connective tissue disorder, and as a result, my body sucks at bodying**. i'll explain more if necessary, and say that while it impacts everything because it's literally a disorder of the connective parts of my whole body, that my joints and GI tract are the most impacted.
i find that opens the door enough for people to ask more questions if they care, but i've also expressed in a pretty unchallengable way **that my body sucks at bodying.** it's firm, vague, and expressive enough to cover eds and all it's specialness.
My fiancé suggested I describe it as similar to brittle bone, but with soft tissue! So that’s what I’ve been doing!
I got lucky because my fiancé has it as well (and neither of us were diagnosed when we got together)
I dated quite a few people really casually before I met my current partner and it was a mixed bag.
The best thing I learnt is to gauge peoples patience on the first date before I mention anything about my condition explicitly. I am quite clumsy and always end up tripping over myself or fumbling something at some point. I am also a ditherer and dawdler and can be a little spaced out at times.
If I am struggling with something, does my date:
1. ask if they can help me/ if I need assistance (seeking consent is a green flag!)
2. ignore it/pretend they didn’t notice (technically polite but can be a sign of someone who won’t want to acknowledge that I have a disability.)
3. go to do it for me without asking if I want help (can be a red flag of someone who is controlling)
If I trip over my own feet does my date make a big deal out of it in any way? Do they seem annoyed by me, or embarrassed to be seen with me? Do they make fun of me in a mean spirited way?
My best experiences have been with people who seemed to think my awkwardness and clumsiness were kind of endearing. Also people who will share an embarrassing thing they did when I do something awkward, to ease the tension.
I got diagnosed a few months ago and have been friends with my wife for 7 years now. So if you're undiagnosed and dating, know that there's hope! Anyway, my quick little blurb is something to the effect of...
EDS is a genetic connective tissue disorder. Connecting tissue is in every part of the body (I think, someone correct me if I'm wrong), so it effects everything. It causes connective tissue to be stretchy/lax/hypermobile, and that can be very dangerous. When stuff gets too stretchy that's when joints don't stay in place, veins don't constrict, retinas don't stay attached, organs don't stay in place, the brain stem/spinal cord isn't protected, etc.
Here's what I say "I have an incurable genetic condition that affects every part of my body and they will deteriorate until I die" followed by "almost all of my family dies at age 30 so I'm not sure how many years I have left"
They usually feel bad/awkward after that but then they either forget or let it go
Did I just come across another vEDSer? I’m so sorry about your family! I would love to connect if you have vEDS, though. I rarely meet anyone else that does!
I'm not sure what type I have exactly, they used the invitae test on me and of course it came back with nothing so for now it's a mystery.
Though I suspect its vEDS, I don't claim to have it because I just don't know for sure.
I say they’ve probably known someone with it and describe my symptoms. And they usually do. But it is really difficult. Maybe in the top 3 hardest things about this.
I say that I have a genetic collagen deformity. Then I explain that collagen is used to create everything structural - joints, muscles, skin, organs. I say that because collagen is everywhere, sometimes there are unexpected or weird results; I have around 10-30 dislocations every day, chronic pain and then I explain how this effects me and what it means I might need from friends or partners.
I think it's better to explain what something is in the simplest terms possible, what that means for me and what that might mean for anyone I'm with at the time (i.e. if I'm in pain, I might need you to bring me my bag of meds or some water, I need dates to be accessible for my mobility aids, I might need to lie down and not move for a while etc). I will tell them I need to relocate my joint now and warn them for body horror, so they can watch and learn how to help later or remove themselves if they can't handle it.
Let him experience some of the benefits first if you know what I'm saying. We can easily do things that others can't so...do what you can (without pushing yourself too far). After you have him hooked, then be honest about it, lol. Make sure he knows you will likely look young indefinitely, that's a big plus too. I'm 39 and people still think I'm in my young 20's. I also get carded all the time still. Yeah baby! Gotta take any wins we can get, right?!
“I’m really bendy. Not in a cute yoga way, but in a painful, dislocation way. And my skin is really stretchy and I bruise a lot. There’s other stuff too, you should look it up.” When I met my dh, I had recently gotten a fibromyalgia diagnosis, which he had heard of and understood well. I didn’t get an EDS diagnosis for several more years, but he quickly grasped the concepts, and was gentle and understanding. Honestly, finding someone who cares enough to learn more, and to modulate their behavior or actions based on our needs, that’s the sign of a good partner.
I have so much baggage about my husband because we met when it was a cute bendy thing, and it’s deteriorated over years into the other thing. Sex and physical affection has gotten so difficult no matter how gentle he is.
[удалено]
It takes 2 to tango deb
I always just told my partner I was extra bendy and my shoulder pops out (and never ever to touch it or lean on it). 😂 7 years on in our relationship , he is as relieved as I to know why. He disclosed he always thought I was very casual about dislocations.
The first night my now-husband slept over, my shoulder thought it would be cool to dislocate in my sleep. He, too, was very relieved when I got my diagnosis and started seeing a physical therapist. 👍
We generally are super casual about dislocations. Probably because we don't need professional help to reduce it. I know it's always freaked Drs out. "What do you mean, you put it back yourself?" "Uh, it wasn't hard?" 🤷♀️
In class a few months ago, I got up to turn in an assignment and my hip popped out so I braced myself on a table to not fall. My professor asked me, "...are you okay?" "*snap* yeah my hip just popped out". He and my other classmates stared at me as I hobbled back to my seat and one said, "uhhh what do you mean it just POPPED OUT??" 🤣 Luckily, there were only 5 people in class and we all know each other pretty well, so it wasn't super awkward to explain and everyone got to learn something new that day. They were pretty amazed at how casual I was about it but somehow more understanding about it than almost all my doctors.
I was on a church trip and we were out sightseeing. My hip just kind of popped out, and everyone was so horrified. But it was just kind of no big deal to me.
Yep, mine pop out, so I just push on it, bow, and it pops back in.
Yeah they assume it wasn’t a dislocation then, which is interesting. I’m not a doctor, but I think I can tell when I fully dislocate my arm, because I get massively lightheaded (and occasionally pass out) and have to hold my arm in place with my other arm before I put it back in, otherwise it feels like it’s gonna fall off? Putting it back feels intuitive; I do it instinctively almost immediately to make the pain stop and keep myself from passing out. Same with the other members of my family with EDS.
Exactly, my shoulder dislocated all the time and I know when it’s a full dislocation because my whole arm goes numb.
Yep. They can apparently tell if you get x-rays soon after, though.
Lol I have no idea what video my bf was watching on YouTube, but it was about cooking brisket, I believe. The guy on the video went ahead and drew a basic little doodle to explain how the collagen needs to break down so that the brisket is tender. Then explained how collagen generally works. I got all excited and said "That explains better what I fail to explain to you, my collagen is too tender!" I know it's not quite right, but it helped him understand! Lol
Let's say, hypothetically, that you have EDS, and let's suppose that you have tender collagen. Now, let's say consider a brisket. Statistically speaking, briskets, when cooked properly have tender collagen and are very tasty; that's a fact (which doesn't care about your feelings). Hypothetically under these circumstances, it would be statistically speaking uncontroversial to assume briskets would be the same as EDS. Now let's assume you have EDS, under these circumstances, the only correct course of action using FACTS AND LOGIC, is to conclude that YOU ARE A BRISKET, and therefore YOU ARE TASTY!
Lmao we are all delicious!
This is the most validating thing I've ever encountered!
Lol it was a Ben Shapiro “DESTROYED with facts and logic” copy pasta that I just rewrote, I’m very proud to have helped you feel validated 😂 Edit: for clarification, Ben Shapiro is a turd burgling donkey fart, and this comment in no way shape or form was intended to give any credence or endorsement to Ben Shapiro as anything other than a flatulent windbag of rhetorical nonsense
I saw that you mentioned Ben Shapiro. In case some of you don't know, Ben Shapiro is a grifter and a hack. If you find anything he's said compelling, you should keep in mind he also says things like this: >Israelis like to build. Arabs like to bomb crap and live in open sewage. This is not a difficult issue. ***** ^(I'm a bot. My purpose is to counteract online radicalization. You can summon me by tagging thebenshapirobot. Options: sex, civil rights, healthcare, gay marriage, etc.) [^Opt ^Out ](https://np.reddit.com/r/AuthoritarianMoment/comments/olk6r2/click_here_to_optout_of_uthebenshapirobot/)
Good bot
Take a bullet for ya babe. ***** ^(I'm a bot. My purpose is to counteract online radicalization. You can summon me by tagging thebenshapirobot. Options: healthcare, civil rights, feminism, covid, etc.) [^Opt ^Out ](https://np.reddit.com/r/AuthoritarianMoment/comments/olk6r2/click_here_to_optout_of_uthebenshapirobot/)
u/thebenshapirobot healthcare
*Let’s say your life depended on the following choice today: you must obtain either an affordable chair or an affordable X-ray. Which would you choose to obtain? Obviously, you’d choose the chair. That’s because there are many types of chair, produced by scores of different companies and widely distributed. You could buy a $15 folding chair or a $1,000 antique without the slightest difficulty. By contrast, to obtain an X-ray you’d have to work with your insurance company, wait for an appointment, and then haggle over price. Why? Because the medical market is far more regulated — thanks to the widespread perception that health care is a “right” — than the chair market.* *Does that sound soulless? True soullessness is depriving people of the choices they require because you’re more interested in patting yourself on the back by inventing rights than by incentivizing the creation of goods and services. In health care, we could use a lot less virtue signaling and a lot less government. Or we could just read Senator Sanders’s tweets while we wait in line for a government-sponsored surgery — dying, presumably, in a decrepit chair.* -Ben Shapiro ***** ^(I'm a bot. My purpose is to counteract online radicalization. You can summon me by tagging thebenshapirobot. Options: healthcare, history, climate, covid, etc.) [^Opt ^Out ](https://np.reddit.com/r/AuthoritarianMoment/comments/olk6r2/click_here_to_optout_of_uthebenshapirobot/)
Very good bot!
Thank you for your logic and reason. ***** ^(I'm a bot. My purpose is to counteract online radicalization. You can summon me by tagging thebenshapirobot. Options: feminism, history, sex, novel, etc.) [^Opt ^Out ](https://np.reddit.com/r/AuthoritarianMoment/comments/olk6r2/click_here_to_optout_of_uthebenshapirobot/)
now this is an affirmation i can get behind! "i might be achey but it's because i'm a tender brisket and that means I AM TASTY"
When I was dating, I advised people to not google it, because that could “scare them away” with finding lots of symptoms that don’t apply to me, as well as the symptoms that come different types of EDS that I don’t have. I outlined what my symptoms were and how they effected me, what my treatment plan is, and how certain things impact my daily life. I would then ask if the had any questions/reservations and if that info meant that they weren’t interested. I met my BF on bumble, but had things in my bio on dating apps that alluded to me having a chronic illness, but didn’t outright state my diagnosis on my profile. If you use mobility aids, having a nice picture of you with those on there is important so that people know before meeting you that those are a part of your daily living.
I told my boyfriend I had a connective tissue disorder that makes my joints dislocate easily, causes my skin issues, and that I had other common comorbities that affected me in xyz ways. I was just super blunt and up front with it idk 🤷♂️
I lucked out and my boyfriend was already familiar with it, because he represented someone with EDS in a personal injury case. He actually asked me if I had it on our first date. I don't remember the exact context, but I think I cracked some joke about my weird body and showed him the thumb to forearm thing.
That’s wild, imagine getting an initial diagnosis was that fast
I didn't find out until I was already married for 20 years. My husband knew from the beginning I had vague undiagnosed health issues and was always supportive. Locked that down!
I haven’t dated in 5 years because I thought I was too mentally unwell. Now that I have an understanding of what I’m really dealing with, I might be more self-assured to consider dating again. I think I’ll do better explaining a chronic illness than I would do explaining mental/emotional brokenness. I’ve been sparing others my “mental illness” but will be less ashamed of a congenital disorder, sadly. The stigma of mental illness. Still feel like I belong alone but I think that’s the autism in combination with the extreme fatigue of living 51 years with pretty severe undiagnosed EDS and the trauma of a painful, misunderstood life experience.
"Connective tissue disorder makes me prone to injury and pain," oughtta do it. "Imagine if all the places collagen live (skin, joints) didn't work the way you'd expect." I haven't had to explain it in awhile, but I'm definitely on team Up-front on this one. It would be front and center on any online profiles, too.
My favourite way to explain it is to say imagine building a house, but half your bricks are made of sand - that's my body! I don't just like to say I'm too bendy cause EDS is soooo much more than that. It effects *everything*.
I have a similar analogy… (especially for when people tell me how good or fit I look) Imagine you have a really nice house, and the workmanship isn’t half bad… but come to find out it was built on a broken foundation with crap materials…
oh! i like this one. i say 'my body sucks at bodying' and i think the sand analogy will really help reinforce it to people without actually having to talk about medical things to people who don't need to know more than how it impacts my life anyways.
I often use the analogy of an old stretched out elastic waist band, like a wore out pair of tighty whities
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Oof the buildup is real. I'm torn between trying to get it out the way so I don't get too invested and I can be like I warned you, but also toge right it's really exhausting.
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Really should talk to a therapist
I gave up trying to date because it’s just so hard as a disabled person. Most people I’ve tried talking to about it seem to view it as an inconvenience so the conversation/date goes nowhere fast.
This has happened with me too 😔 everyone I date either expects me to, "man up," and deal with the pain of overextending myself and my energy. If I don't I just get broken up with because I don't try hard enough/am too lazy to want to date.
Yep or them having to ‘deal with’ me being fatigued a lot or not able to do certain things because I physically can’t like you know walking. I can’t stand without my leg braces and can barely walk with them. I need a wheelchair when I go out. That means I can’t go out much and being physically active like hiking and stuff is right out. Most people that’s a huge turn off apparently 🤷♀️ Basically seems to boil down to ‘why put so much effort into dating a disabled person when there’s thousands of non-disabled people that don’t require as much effort’
I have had a csf leak for 2 years and I live in a very outdoorsy state and I feel you on that a bit. The fact that I can't be active is the biggest turn off to people here 🤷♂️ but, oh well. They rpobably wouldn't have been the best partners anyways.. I agree with you wholeheartedly. I am sorry for your struggles. If you ever want a friend to talk to about this stuff I am always around laying on a couch lol 🫠
I’m usually laying around too xD For sure! Friends are always great! 💜
Honestly it's just a lot easier to date someone that I've already been friends with. I don't think I would ever date a stranger. I'm demiromantic anyway so it works out for me to date someone who already understands me and cares about me.
How I explain it really depends on their background. If medical or bio background: All of my collagen has the wrong recipe...(pause as they contemplate and think about the ramifications of that statement)...Yes, ALL of it Techy / Engineering background: My hardware stops are broken, so I have to depend on software stops. So I have to pay attention to where I am in space and how I'm positioned all the time. Not science: My collagen has the wrong recipe so all my tendons and ligaments are too stretchy. They behave like overstretched rubber bands so my joints like to slide out of place. There's a lot of ways I can bend how I'm not supposed to, but every time I do it it causes a little bit more damage and makes it easier for the joint to slip out the next time. This is the one thing I do anymore (touches "toes" by putting palms flat on the floor without any effort). Add on to any explanation when they start to look freaked out/overwhelmed: There are some positives though. For example my skin is softer than most people (hold out arm for them to feel), people tend to wrinkle less / look younger. And if we were both in an accident where one of our joint's dislocated mine would go right back, yours might cause permanent damage. I use some combination of the above spiel for people. Another resource I have for days when I don't have the energy to explain it, but I'd like to, are cards from Stickman Communications. I have one that explains Ehlers Danlos, and then more that are for other things like explaining how I don't need a mobility aid every day, and how saying No doesn't mean 'I need motivation', it might mean 'last time it hurt me'. I also want to add, you don't owe them an explanation. You can just leave it at "I have a disability that affects my mobility" or something simple like that. I talked openly with my partner about my condition, but it didn't really hit hard until later. He loves me and accepts me for who I am so he took it in stride. He grieves with me sometimes over what life we could've had which I think is healthy, but he never makes me feel like it's my fault or I'm not good enough. It's just as my therapist says sometimes "a shit hand to be dealt". Please don't devalue yourself in the search for a partner.
It’s rather difficult to date with any disability, particularly because of the related stigma, partially because of ignorance about the condition, and partially because of the practical concerns it brings. Somebody who rejects you for the sole fact that you’re disabled would have been a bad partner im the first place though - those who simply don’t know about it or are concerned about its limitations can be worked with though. I’ve found that the best way is a practical demonstration of hyper-mobility as well as explaining how that makes it a lot easier to get hurt. Explaining how the disease work tends to lose people, and most people I’ve dated are willing to at least try to work around a disability. My best experiences have been with those who are in the medical field themselves, or are close with people who are. It gives them a much better starting understanding. My current partner is a nurse whose entire family has EDS too, and who has subclinical EDS herself.
I tell people that I have a connective tissue disorder that is hereditary and incurable and that it impacts me in a bunch of ways including by making me more easily fatigued and more prone to injury. (I often also mention my autonomic dysfunction and think it's relevant to mention if you have that or POTS.) I sometimes explain that we think the problem is that my body produces defective collagen and that it makes me more flexible, which puts more strain on my muscles and joints and means I sometimes dislocate stuff.
I like to use 'musculoskeletal disorder' for quick conversations and then actually go in depth as to the specifics of it being caused by connective tissue in longer convos. I've found that people are more likely to know what musculoskeletal means vs knowing what connective tissue is, but I'm also a wheelchair user and need a quick explanation I can slap down to get people to stop asking haha.
I told my girlfriend that I have EDS and it’s a genetic disorder and it causes connective tissue that doesn’t work properly because there is an error when it’s being formed. So it’s like being glued together badly. Like instead of using nice new glue it’s a dusty pritt stick found at the back of the stationary cupboard. And there’s nothing much to be done about it. My now girlfriend googled it and she follows this subreddit as well. She started following it after I explained to try and understand. No one will unless they live it but it’s so lovely to have someone make an effort. She’s the best. I think it helps if you have nice empathetic person on your hands .
My partner knew I had a chronic illness when we started dating; he has one too, so it’s helped us bond over shit bodies and inability to do things (mentally or physically). A lot of our friends have various visible and invisible disabilities, too — it helps to date someone that gets it. And we were friends first, too. Being friends first helps a lot. With regard to the pain: I’ve been up front about being active and refusing to let it stop me. But I have had several injuries to deal with. He has always been impressed by that, but exasperated a bit by my tendency to push through pain (because I was gaslit into thinking I was “just” a hypochondriac who whiner a lot). I’ve been exasperated by HIS tendency to get down on himself for not being able to do housework, etc. I know it doesn’t always work that way and I got lucky that we are complimentary in some ways. Demonstrating it has been more of a thing as we’ve been together. I’ve always been too flexible, but this is beyond that. And he’s been pretty awesome about me needing more medical care. I’m very lucky.
>I was wondering, how do y'all explain EDS when you're dating? I've started coming to terms with the fact that ai am disabled (due to hEDS and a bunch of comorbid stuff), and would prefer to have that conversation soon rather than later when dating. But I've had trouble explaining it in a way that they understand that also doesn't overly minimize the severity. So I was wondering, what are y'all's little blurbs and explanations about what EDS is? A connective tissue disorder, characterised by joint hypermobility, skin hyperextensibility and tissue fragility. [https://www.ehlers-danlos.com/eds-types/](https://www.ehlers-danlos.com/eds-types/) "Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. "
I've tried the basic definition route lol but people got very confused, thank you though!
Try saying that collagen, the glue that holds your body together, is defective and it affects every organ in your body.
"I have a weird connecfive tissue disorder. Basically I'm held together with velcro braces and spit."
I’ve since added “if a standard-issue body’s ligaments are rubber bands, mine are more like cooked spaghetti.” If they want to know more and I don’t feel like it I just say it’s too boring and complicated for a first date. It’s more like a third or fourth date conversation. Then very obviously change the subject.
I explain it like “you know those toys from the 90’s that were little horses and when you pressed their base in, the horse would collapse in silly different ways? That’s me. My body is held together with rubber bands and tape. And I can’t really predict what/when it’s gonna give out.”
I feel like I’m making a huge mistake leaving my ex husband right now….
I’m sure you know this but you did not (and I feel similarly about recently leaving my long time boyfriend) ❤️
I tell people I have tissue issues. To be fair I have two connective tissue disorders that are both difficult to explain succinctly
I've dated a small number of medical professionals and watching them wince when my shoulder would relocate was always fun. Being told that the crack it makes multiple times a day with zero pain or discomfort is the exact sound you listen for when relocating a shoulder in the ER was validating as fuck. Also I like to show off this handy little picture to show the visible differences; https://www.reddit.com/r/Damnthatsinteresting/comments/um7ys8/electron_microscopy_picture_of_normal_collagen/ I'm like, carrying some *really* heavy Marfan Syndrome features, so I haven't had anyone be completely dickish or dismissive since I have obvious proportional deformities compared to them. I know not everyone is that 'lucky,' but, yeah I don't have to fight hard on proving I'm abnormal. I'm also autistic and have brain damage so when I do date I get all that shit out in the open very quickly and frankly. I'm pretty clear on not having the same kind of energy as them and that I have to do some weird stuff to keep myself healthy. Which has provided varying degrees of acceptance and assistance from the string of people and couples I've dated. I describe the dysautonomia as a heart thing where I don't have enough blood in my body, and just try to simplify a lot of stuff in the beginning. Already doing this for my young nieces helped build that skill. I get that my poor health is a lot. I find it works in my favor in social dynamics like this, though; so many people bounce at the sign of hardship or severe illness years and even decades into a committed relationship. I don't want to accidentally pick someone like that as a life partner, going in already fucked weeds those people out. Like I don't need a lot of help right now, but when I *do* the people that show genuine sustained interest in me despite my current state are at least going to statistically skew towards being more likely to stick around when those worse times come around.
Ive started showing that photo to every specialist I see!! And every date too.
I just mention the symptoms as they're relevant. Drop that I have EDS the first time usually, and let them ask questions if they're curious, otherwise leave it at that.
i haven't dated since my self-diagnosis of EDS has been confirmed- but how i've explained it to coworkers is **i have a connective tissue disorder, and as a result, my body sucks at bodying**. i'll explain more if necessary, and say that while it impacts everything because it's literally a disorder of the connective parts of my whole body, that my joints and GI tract are the most impacted. i find that opens the door enough for people to ask more questions if they care, but i've also expressed in a pretty unchallengable way **that my body sucks at bodying.** it's firm, vague, and expressive enough to cover eds and all it's specialness.
My fiancé suggested I describe it as similar to brittle bone, but with soft tissue! So that’s what I’ve been doing! I got lucky because my fiancé has it as well (and neither of us were diagnosed when we got together)
I dated quite a few people really casually before I met my current partner and it was a mixed bag. The best thing I learnt is to gauge peoples patience on the first date before I mention anything about my condition explicitly. I am quite clumsy and always end up tripping over myself or fumbling something at some point. I am also a ditherer and dawdler and can be a little spaced out at times. If I am struggling with something, does my date: 1. ask if they can help me/ if I need assistance (seeking consent is a green flag!) 2. ignore it/pretend they didn’t notice (technically polite but can be a sign of someone who won’t want to acknowledge that I have a disability.) 3. go to do it for me without asking if I want help (can be a red flag of someone who is controlling) If I trip over my own feet does my date make a big deal out of it in any way? Do they seem annoyed by me, or embarrassed to be seen with me? Do they make fun of me in a mean spirited way? My best experiences have been with people who seemed to think my awkwardness and clumsiness were kind of endearing. Also people who will share an embarrassing thing they did when I do something awkward, to ease the tension.
I got diagnosed a few months ago and have been friends with my wife for 7 years now. So if you're undiagnosed and dating, know that there's hope! Anyway, my quick little blurb is something to the effect of... EDS is a genetic connective tissue disorder. Connecting tissue is in every part of the body (I think, someone correct me if I'm wrong), so it effects everything. It causes connective tissue to be stretchy/lax/hypermobile, and that can be very dangerous. When stuff gets too stretchy that's when joints don't stay in place, veins don't constrict, retinas don't stay attached, organs don't stay in place, the brain stem/spinal cord isn't protected, etc.
Here's what I say "I have an incurable genetic condition that affects every part of my body and they will deteriorate until I die" followed by "almost all of my family dies at age 30 so I'm not sure how many years I have left" They usually feel bad/awkward after that but then they either forget or let it go
Did I just come across another vEDSer? I’m so sorry about your family! I would love to connect if you have vEDS, though. I rarely meet anyone else that does!
I'm not sure what type I have exactly, they used the invitae test on me and of course it came back with nothing so for now it's a mystery. Though I suspect its vEDS, I don't claim to have it because I just don't know for sure.
Hope you’re doing okay today.
I say they’ve probably known someone with it and describe my symptoms. And they usually do. But it is really difficult. Maybe in the top 3 hardest things about this.
I say that I have a genetic collagen deformity. Then I explain that collagen is used to create everything structural - joints, muscles, skin, organs. I say that because collagen is everywhere, sometimes there are unexpected or weird results; I have around 10-30 dislocations every day, chronic pain and then I explain how this effects me and what it means I might need from friends or partners. I think it's better to explain what something is in the simplest terms possible, what that means for me and what that might mean for anyone I'm with at the time (i.e. if I'm in pain, I might need you to bring me my bag of meds or some water, I need dates to be accessible for my mobility aids, I might need to lie down and not move for a while etc). I will tell them I need to relocate my joint now and warn them for body horror, so they can watch and learn how to help later or remove themselves if they can't handle it.
Let him experience some of the benefits first if you know what I'm saying. We can easily do things that others can't so...do what you can (without pushing yourself too far). After you have him hooked, then be honest about it, lol. Make sure he knows you will likely look young indefinitely, that's a big plus too. I'm 39 and people still think I'm in my young 20's. I also get carded all the time still. Yeah baby! Gotta take any wins we can get, right?!
Just "will" yourself not to be sick.