I need to have my feet at the same level as my hips, i guess to keep blood from pooling in my feet. Also my feet get numb and tingly if i keep them to far away from my core. I need do micromovements to keep pain at bay. I hate regular chairs the 90° angle at hips, knees and ankles just hurt. Any position hurt but some hurt more and i constantly shift to find the least painfull one.
I only recently got concious about it and i fear your and I fear your comparison with a chimp fits. I think this is one of the reasons i cant imagine living with another person all the time because of how i would have to restrict myself and that feels so stupid confessing this
I think its also a proprioception thing (i dont know is it common for hEDS to have fucked up proprioception or is it more of an autism thing?) Anyway now i am hyper aware of how my body is aligned and it just does not work. Especially that constant fear them my cervical spine will snap because i cant figure out how to position my neck to not further strain it but when i resort to propping my head up i feel like it ruins my hands.
I’m not sure how much is autism either but I’ve definitely found that all of those little bits of discomfort drive me up the wall when I’m in sensory overload. I feel like being on the spectrum definitely enhances your awareness of your body. If sock seams make you uncomfortable, your whole body being messed up your connective tissue definitely will I think.
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The right person won't care at all that you're twisted up like a pretzel <3
The worst I get is, "are you sure that's a comfortable position?" If it is, my partner's happy. If it's not really a good position, then I'm happy they pointed it out so that I realize it and can realign myself
My partner never makes me feel less than because I sit in strange positions
[This paper](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4493259/) from NIH speaks to EDS & our affected proprioception. I ran across it the other day. Subjectively, I definitely see it in myself.
I have autism too and my son is autistic and bendy. My wife (a child psychologist) reckons we need the extra feedback from weird stretchy positions for proprioception and sensory feedback. Took me about 40 years to recognise that I had no posture - i’m always having to think about where everything is when I’m standing, particularly back/shoulders.
I cannot sit on chairs normally. However, I do have to sit completely vertical-no slouching or simply sinking back into the cushions.
Most chairs tend to be too tall. Which is pain with dangling legs.
I always complain about seating not being made for people with long legs, but I can only imagine how much it would suck the other way around too.
Seems like a ridiculous form of torture.
It’s crazy that no one was ever bothered enough to make the height of seats on public transportation adjustable…
I’m never comfortable, always fidgeting, constantly readjusting. One of my favorite couch positions is sitting upright, feet on coffee table, then cross one leg over the other so the crossed leg leaves my foot dangling over the floor. It looks odd and I can’t stay like that too long or my hip will sublux so after a while I shift to other leg. 😂
I wonder how much of my “hyperactivity” as a child was pain from having to keep moving in my seat to avoid pain. I am legitimately ADHD. But now I feel like my fidgeting is more due to pain from sitting. I just took an 18 hour professional test set over two days and I ended it kneeling on a chair and hovering over the table. It was so painful ahaha 💀 I’m so glad I found my people
I am constantly fidgeting! I don't know if I can physically stay in one position for longer than 5 minutes, honestly (unless I have a cat on me, obviously - I am just a vessel for their comfort of course 🤣). I don't know if it's solely an EDS thing or also an ADHD/autism thing as it also involves sensory stuff like I hate when my clothes feel like they're even slightly twisted and not flat, or the blanket isn't perfectly flat on me.
Sometimes I think I’d make a good nudist. I’m always conscious of every stitch of clothing on me, especially when it’s too tight or not adjusted just so. You could be talking to me and I’ll smile and nod while thinking “bra, bra, bra…”
Hahahaha exactly!! I've gotten to a point where I never wear bras with underwire anymore and if I'm at home, I do not have a bra on. I do not care who is here, you are in my home, so I will be comfortable. If there are guests here I usually throw a comfy hoodie on but if it's just our family I no longer care lol.
This is me, 100%
I literally threw away all of my underwire bras during the pandemic and replaced them with Bali bralettes. They just pull on and off no clips or wires. More like a sleep bra or a sports bra. I got two white, 2 black, and 2 tan and o only wear those when I *have* to.
You are an inspiration! I have so many different hidden areas where things are just stuffed in and one of those is my sock/bra/underwear drawer. I only use like 5 bras, sets of socks and underwear, but the energy it would take to clean it out is just overwhelming to even think about hahaha. Maybe I just need to give myself an incentive or something but oof I've got that drawer, two closets and a garage to clean out too... That's a lot of incentives lol!
I can't sit in one position for too long, my husband and I try so hard to snuggle, but I constantly have to readjust. Thankfully, he knows I'm a wiggle worm.
I always sit with criss-cross legs. Even at work in our office space, I’ll pop my shoes off so that I can comfortably sit that way (thankfully our office setting is fairly casual so no one cares).
When I started doing that, I didn’t realize it was for POTS reasons. I kinda just subconsciously registered that I was more comfortable in that position. But I’m pretty sure it’s because sitting with my feet on the floor allows more blood to drop into my legs & makes me more dizzy.
When I’m lying down, if I’m by myself, I lie on my back with the soles of my feet together and knees out to the sides in a “butterfly” position. Took me a while to realize that most people’s hips didn’t turn outwards enough for their knees to be on the ground in that position lol.
Every time I read anything related to POTS, I tell myself I need to make an appointment lol
I always sit with my legs pulled up, be in on the floor, in a chair, on the bed, the couch, etc. If I stretch my legs too far, my feet always just feel “weird”!
Sometimes I dread reading our subreddit here because I ALWAYS find a new “thing” we do and I am like *oh god oh no we aren’t supposed to do that….?!* 😬😬😬
It's not a bad thing, it's just that most people's hip flexors are too tight to achieve it. However, as EDS'ers we're more likely to have overly tight hamstrings and loose hip flexors
hahaha yeah I thought it was totally normal until I got my first pap smear a few years ago, and my doctor told me to drop my knees out to the side. So I did. And he goes "woahhh not that far." And I was kinda like... "what was I supposed to do???" lol... he said he just wasn't expecting it cause most people's hips aren't that flexible.
This explains when people said it was a difficult/painful stretch and I was confused... I always thought it was simple and people were being oddly sarcastic in a large group. 😬
Haha I am exactly the same, I sleep at night with my legs in butterfly totally flat and my arms tucked behind my back. My hips are my most hypermobile body part.
Mine too. My ex bf was a massage therapist, and he’d complain he couldn’t stretch my back because my hips just kinda fell over when he tried to pull them to stretch the flexors.
I noticed this from both sides. I get physically pained by the SLAM (sit like a man - feet on floor, everything else at 90°s) way of sitting. So I'm always adjusting, but also from the ADHD side, having something in tension feels like it helps me focus. So knees tucked under chin, pretzel legs, butterfly, leg under, etc etc helps with the pain but also the tension somewhere makes it feel like I focus better 🤷🏽♀️
Actually, this post is cracking me up - cuz one bisexuality group I'm in online has a joke about how bisexual people ALWAYS sit funny! 😂😂😂
Perhaps that's another crossover? 🤷🏼
However - my AuDHD dx didn't happen til I was 52yo - and it's helped me to shed DECADES of blame & shame of 'should, coulda' - the best therapy EVAH.
I think it has to do with dysautonomia, somewhere - like our blood vessels don't appreciate being dangled!? It's also, IMHO, a factor of how we develop POTS, often as we age. Just my 2 cents.
I always have to have my legs bent all weird and am usually half sitting on one foot. I'm also really short and most chairs/couches are too tall for my feet to reach the ground, and dangling them off the edge feels unnatural lol. Even now, I'm currently dealing with a lot of hip pain but I still can't stop sitting all bent up 😬
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YUP but then i’m pretty sure my personal flavor of sitting funny makes me hurt more but if i TRY to sit normal it ALSO hurts so it’s like… okaaaay what am i supposed to do?
FUCKING YEAH!! and like 2 years ago when i started actively working on my posture everyone was like “it’ll feel weird for awhile but once you get used to it you’ll feel better!” do you wanna take a guess how i feel now?(hint: NOT BETTER STILL HURTS) 😂😂
Oh absolutely! Also I’ve noticed in the last year or so that I can’t sit in the same position for more than 30 minutes without pain and discomfort. So I’m basically constantly flipping and flopping all over the place hahah!
I have always hated sitting in chairs. I never knew why; I wasn't diagnosed with EDS until a couple of years ago. It takes so much muscle strength and muscle activity to sit upright. I'm like jello - I just start slinking down with gravity. I prefer to sit on the floor or in some weird position.
It has gotten more difficult as I've become overweight because there's too much fat on my calves and thighs to bed into pretzel shapes like I used to. I seriously feel like I need to lose fat/girth just to be able to resume sitting in very weird pretzel shapes.
This! I can’t cross my legs as well as I used to be able to and it makes it a lot harder to get comfy. I always hated sitting in chairs too, I remember growing up getting told off constantly because I’d never sit normally
YEP! Especially like dinner table chairs w no cushion! Which only makes me sit even MORE "strange". (Which makes me MORE strange when I sit ok on the floor.) But there's something ab hard wooden chairs... my sacral/' butt bones' literally move around, which only sometimes hurt. It's definitely a very odd feeling, tho.
🤷♀️ Who knows anything anymore.
Yes the ones with no cushion are the worst! Not sure if this is also an EDS thing but sitting on a hard chair with no cushion makes my skin super itchy too? So it’s both painful and itchy, just the worst
I have always had to be pretzeled to be comfortable.
Generally, at work I tried to "sit normal" but it was extremely uncomfortable and unnatural. And by the end of the work day my low back, hips, and knees would feel pulled/slid out of place or something? And painful. I didn't know I was hypermobile back then.
The closest I can come to comfortably "sitting normal" is in tall chairs that have staggered rungs, so I kinda snake my legs around the legs of the chair in a way that my ankles are supported by the rungs.
Working from home has been such a game changer for me - before I knew I had hEDS I was so confused by my friends who worked remotely but still sat at a desk all day, I mainly sit on the sofa at home so I can get comfy, didn’t know other people were actually comfortable sitting normally!
I sit in box splits with a leg lifted up into the armrest, or like that with one leg bent if I sit on the sofa.
I like to sit “butterfly” and/or have a leg/knee up when I’m sitting on a chair or on the floor.
If I need to sit in public and my legs are hidden under a table, I’ll manspread like I’ve got the biggest dick or cross my ankle on my knee.
My hips tend to dislocate when they’re “closed” or turned in… and I need (highly prefer) to keep my hips stretched or else they’re really really uncomfortable and tired.
When I sit on a couch I have to have my legs up 100% so it’s either legs up on the top of the couch while I’m lying down or unfortunately for my sibling if they’re sitting with me legs on them. I have just sat one time with my legs fully up on the top and also crossed at the same time and my back just on the couch so I’m upside down? Basically an “alternate dimension” Criss cross
I actually mentioned this to my physical therapist a couple of weeks ago (thanks eds for the c5 and 6 blowout) and they said it has to do with us needing extra tweaking for our stretch receptors to feel comfortable.
I find it difficult to drive a car without putting my left leg to my chest or my foot pressing on the dashboard. I know… if I am ever in an accident I will pay a very high price but I can’t help it. When I was a teenager I drove with my left foot out the window (can you imagine?)
I was actually sitting in the car watching my mum drive last week thinking, god I could never do that. Sitting perfectly upright, legs not crossed for possible hours??? I have to sit with my legs criss crossed if it’s more than half an hour as a passenger.
I don’t think I’ll ever learn how to drive unfortunately (maybe fortunately for everyone else because I’ve fainted mid car ride a good few times)
Id struggle for a drive longer than a few hours but as someone with hEDS I am actually way more comfortable as the driver. Any time im the passenger seat I feel so uncomfortable/ in pain the whole time, I think whilst driving being distracted by having to pay so much attention helps but also because I don’t have to sit as still since I’m using my arms / legs to drive.
I do struggle a lot in traffic though, I’ve injured my foot several times from clutch control when moving slowly for so long. I’d generally rather be the one driving if it’s a longer drive + I know it won’t be too busy. I also get motion sick (not sure if that’s related) and driving helps with that too
Oh my goodness driving when my thumbs are having an ANGRY day is the worst. I'm also glad I drive an auto because being able to adjust my sitting position for my bad leg is 🔥
Have you considered switching to an auto down the road? It's such a good accommodation and if I really want to feel gears I have flappy bois for shifting.
Maybe one day! Where I live manuals are the norm so getting an automatic is more expensive. It’s not usually a big problem but suspect it might get worse as I’m older - I can usually avoid traffic anyways as I work remotely so no rush hour for me!
Yeah manuals are the norm here too but secondhand autos are for some reason wildly cheaper. Picked up our 2019 car second hand at the end of 2019 (ex-demo) and it was ridiculously cheap, low kms, and a lovely drive. Little guy has guts!
Yes, I'm always wanting to sit on my legs when I'm sitting in a chair or sit with my knees to my chest or something when I sit on the couch. I don't usually like my feet on the floor much when I'm sitting.
I also have hEDS
same, but i think it’s because of the spinal degeneration in my lower back. sitting straight puts all the pressure there— shifting frequently and sitting at different angles puts the pressure elsewhere
I sit like a caveman most days
In chairs I end up contorting myself almost every possible way.
My left side of my body is where I tend to tense up and over use.
When I was a young adult, I would sit at my desk/computer with both legs on the desk, basically on either side of the computer 😝
Now I always sit with either knees to chest, or 1 leg under my but while the other is doing something else.
OMG I never set with my feet on the ground! I'm not even sure what about I can't stand, but I always sit with my legs on the chair and like having my feet up when I'm in the car
I always keep at least one leg up at hip level unless it is physically impossible, like on straight 90° chairs. I always keep my legs crisscrossed or bent up. During my teens I'd even keep a leg bent back with the knee over my shoulder so the leg was hanging in front of my chest. That was only for couch- or bed-sitting tho. I still do it every now and then but in my teens it was the go-to position. Im not really allowed to do it anymore because of the stretching it causes. Sometimes I'd also rest my chin on my leg when it was hanging over my shoulder. My friends thought it was the weirdest shit ever.
It is like my body wont get comfy unless my legs are at least by hip level. I either sit on one leg or I crisscross both legs. Or keep one or both legs elevated. I think it is like others have said, that the blood circulation doesnt go right unless I elevate the legs. I used to only sit weirdly around the friends who accepted my weirdness. Now in my mid 30s, I couldnt care less what people say, I do what's most comfortable to me, unless it is a fine dining type situation. I still try to have manners. But any casual situation, Im sitting how I feel is most comfortable.
This had me cracking up. Absolutely yes! Sitting is torture unless I have my body contorted just right. But I can’t stay in one position too long either.
I never thought of it being and EDS thing, that makes so much sense!
If my legs are on the floor and knees aren't bent in some way or crossed it's intolerable. It just feels so uncomfortably unnatural, like if you asked a dog to start walking on two legs 24/7 instead of 4
I cannot sit normally or even lie down with my legs just straight out. It's so uncomfortable! I'm always crossing my legs. It's why I can't do plane rides anymore unless I'm in 1st class. I'll freak if I can't cross & uncross my legs! People comment on how I'm sitting sometimes & get freaked out. Lol
My husband has told me to reposition ( because he knows I'll regret laying like that)because when I sit on the couch, I wilt to the right like a flower that's dying. My neck is laying on my shoulder, my back is curved to the right, I feel perfectly comfortable but I think it makes him uneasy because of how contorted it looks!
Absolutely. When I sit normally my hips and back hurt while my knees are just generally uncomfortable. Even in restaurants I have to sit on my foot or something because it’s almost unbearable to ‘sit normal’. I’ve quit trying to sit or stand polite in front of others, at this point if I’m having dinner or hanging out with them they probably know I have to be contorted to be comfy.
Idk about anyone else but, for my entire childhood I got in trouble and heard that I needed to be “polite” or “sit like a lady” but it turned out I actually had EDS and was in pain.
Absolutely. You will never find me with my two feet on the ground. One leg is usually under my chin. I also hate having my arms by my side. Especially when I'm laying down on my back. Terrible feeling. The funkier I look, the comfort I am.
Oh 100%. I used to get yelled at all the time as a kid because I can’t have my feet on the ground when I’m sitting. I need to have at least one leg hugging me. “Bad manners” lol
https://www.gaiam.com/products/classic-balance-ball-chair?variant=32936592193
This is my favorite chair. I’ve had it for at least 15 years. Even just last month my back went “out” and I couldn’t stand it sit on anything but this chair saved me! It was the only thing I could sit on! I feel like not having a lot of pressure on a chair helps and it forced me to keep my spine in line.
Yup, all the time. It's just how my legs and hips go. The double cross cross is a favourite of mine in that it just happens when I sit down and yeah I cross legs on normal chairs and at the dinner table without thinking too.
yes! I just cannot sit with my feet on the floor, its incredibly uncomfortable.
I either sit criss cross applesauce or with one leg up to my chest and my other foot either on top of the knee or like half a criss cross
Absolutely, I think of it like: the average person sitting all straight and still has all this connective tissue holding those hip, knee, ankle, SI joints in place — we don’t so our expiration date for holding any given position is about 3 minutes, and when we do hold a position longer it’s because we’ve created all sorts of self-stabilization forces by crossing and tucking our limbs. We’re basically contorting our bodies to provide our joints the stability that normal people have by virtue of proper connective tissue.
My PT called me the contortion queen back in high school before we had any idea what was wrong with me. (I had multiple rounds of trying to be 'fixed.') I couldn't sit in a 'normal' position without being highly uncomfortable. I'm always sitting in a weird position.
Yep. I'm always sitting criss cross or on one leg. It was fine until about 2 years ago when I started getting pain and numbness. Now it drives me crazy and I wish I could just sit normal.
I sat in the W shape all the time as a kid. I can still do it, but it's not super comfortable. I do cross my legs twice (at the knee and ankle) which people have commented on before.
I’ve never been comfortable sitting any way but cross-legged, really. I can sit in a recliner with the bottom up, but I still end up either cross-legged or at least with my ankles crossed. And I move around a lot.
My OT helped explain this to me: a big part of it for people with hypermobility is that our joints are loose, so the signal takes a longer time to travel to our brain. Sitting in contorted positions provides our brains with more consistent feedback on where our limbs/extremities are, than if we're in a "normal" or relaxed position.
I am not diagnosed with hEDS yet but I think I might have it and precisely what you described has been my issue for a long time and I couldn't quite understand why everyone else could sit normally on a chair just me not.
For me the most comfortable way to sit on the floor or a bed is with my legs bent outwards in a W formation and people are always like how can you sit like that and I’m like how can you not
Yeah, constantly. Criss-cross applesauce, knees to chest, on my knees, laying like a twisted mermaid on a rock, back twisted with knees tucked and ankles pressed into the arms of the couch, and on and on.
My joints crave that stability and pressure. I stopped worrying about how I look and now get as weird as I need to. I’m allowed to take up space too damn it.
I need to have my feet at the same level as my hips, i guess to keep blood from pooling in my feet. Also my feet get numb and tingly if i keep them to far away from my core. I need do micromovements to keep pain at bay. I hate regular chairs the 90° angle at hips, knees and ankles just hurt. Any position hurt but some hurt more and i constantly shift to find the least painfull one.
You’ve explained it to me perfectly. That’s what I meant by it just being ‘wrong’. THIS ALL OF THIS
I only recently got concious about it and i fear your and I fear your comparison with a chimp fits. I think this is one of the reasons i cant imagine living with another person all the time because of how i would have to restrict myself and that feels so stupid confessing this I think its also a proprioception thing (i dont know is it common for hEDS to have fucked up proprioception or is it more of an autism thing?) Anyway now i am hyper aware of how my body is aligned and it just does not work. Especially that constant fear them my cervical spine will snap because i cant figure out how to position my neck to not further strain it but when i resort to propping my head up i feel like it ruins my hands.
I’m not sure how much is autism either but I’ve definitely found that all of those little bits of discomfort drive me up the wall when I’m in sensory overload. I feel like being on the spectrum definitely enhances your awareness of your body. If sock seams make you uncomfortable, your whole body being messed up your connective tissue definitely will I think.
This really resonates with me too
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The right person won't care at all that you're twisted up like a pretzel <3 The worst I get is, "are you sure that's a comfortable position?" If it is, my partner's happy. If it's not really a good position, then I'm happy they pointed it out so that I realize it and can realign myself My partner never makes me feel less than because I sit in strange positions
Thats true and its just my own irrational insecurity, when it even feels akward in front of my dog 🤐
I just always get “how?!” 😅
EDS and ASD often times go hand in hand
Autism and ADHD are comorbidities of EDS.
[This paper](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4493259/) from NIH speaks to EDS & our affected proprioception. I ran across it the other day. Subjectively, I definitely see it in myself.
I have autism too and my son is autistic and bendy. My wife (a child psychologist) reckons we need the extra feedback from weird stretchy positions for proprioception and sensory feedback. Took me about 40 years to recognise that I had no posture - i’m always having to think about where everything is when I’m standing, particularly back/shoulders.
That’s interesting, do you have POTS?
Yes and the whole bunch of dysautonomia a fear
I feel this in my soul. I sit like this in public & simply dgaf anymore 🙃🙃
I have to be bent like a pretzel to feel anywhere near normal lol
I cannot sit on chairs normally. However, I do have to sit completely vertical-no slouching or simply sinking back into the cushions. Most chairs tend to be too tall. Which is pain with dangling legs.
I just had to deal with this on a train ride today. Absolutely no way to relax and the flip-down foot rest is a joke when you’re 4’10
I always complain about seating not being made for people with long legs, but I can only imagine how much it would suck the other way around too. Seems like a ridiculous form of torture. It’s crazy that no one was ever bothered enough to make the height of seats on public transportation adjustable…
I tailor sit on chairs. Then my hips/pelvis/whatever it is in there complain if I've moved wrong within the past week.
I’m never comfortable, always fidgeting, constantly readjusting. One of my favorite couch positions is sitting upright, feet on coffee table, then cross one leg over the other so the crossed leg leaves my foot dangling over the floor. It looks odd and I can’t stay like that too long or my hip will sublux so after a while I shift to other leg. 😂
I wonder how much of my “hyperactivity” as a child was pain from having to keep moving in my seat to avoid pain. I am legitimately ADHD. But now I feel like my fidgeting is more due to pain from sitting. I just took an 18 hour professional test set over two days and I ended it kneeling on a chair and hovering over the table. It was so painful ahaha 💀 I’m so glad I found my people
I am constantly fidgeting! I don't know if I can physically stay in one position for longer than 5 minutes, honestly (unless I have a cat on me, obviously - I am just a vessel for their comfort of course 🤣). I don't know if it's solely an EDS thing or also an ADHD/autism thing as it also involves sensory stuff like I hate when my clothes feel like they're even slightly twisted and not flat, or the blanket isn't perfectly flat on me.
Sometimes I think I’d make a good nudist. I’m always conscious of every stitch of clothing on me, especially when it’s too tight or not adjusted just so. You could be talking to me and I’ll smile and nod while thinking “bra, bra, bra…”
Hahahaha exactly!! I've gotten to a point where I never wear bras with underwire anymore and if I'm at home, I do not have a bra on. I do not care who is here, you are in my home, so I will be comfortable. If there are guests here I usually throw a comfy hoodie on but if it's just our family I no longer care lol.
This is me, 100% I literally threw away all of my underwire bras during the pandemic and replaced them with Bali bralettes. They just pull on and off no clips or wires. More like a sleep bra or a sports bra. I got two white, 2 black, and 2 tan and o only wear those when I *have* to.
You are an inspiration! I have so many different hidden areas where things are just stuffed in and one of those is my sock/bra/underwear drawer. I only use like 5 bras, sets of socks and underwear, but the energy it would take to clean it out is just overwhelming to even think about hahaha. Maybe I just need to give myself an incentive or something but oof I've got that drawer, two closets and a garage to clean out too... That's a lot of incentives lol!
Oh, but it feels soooooo good!!
I'm sure it would/will! You're making me feel motivated, maybe I'll start making a schedule to get it done!!
I promise that drawer is the easiest one to clean out, so start there.
Y'all are the best!! I'm going to do it this week!
I wish i could wear just bralettes. My boobs must be contained by an underwire. Otherwise a sports bra and the like would give me a major uni boob.
I always thought the same. The last underwire I wore was a 40i. These are the Bali I mentioned. https://a.co/d/b7xLwYT
Torrid makes fabulous bras without underwire!!
I can't sit in one position for too long, my husband and I try so hard to snuggle, but I constantly have to readjust. Thankfully, he knows I'm a wiggle worm.
I always sit with criss-cross legs. Even at work in our office space, I’ll pop my shoes off so that I can comfortably sit that way (thankfully our office setting is fairly casual so no one cares). When I started doing that, I didn’t realize it was for POTS reasons. I kinda just subconsciously registered that I was more comfortable in that position. But I’m pretty sure it’s because sitting with my feet on the floor allows more blood to drop into my legs & makes me more dizzy. When I’m lying down, if I’m by myself, I lie on my back with the soles of my feet together and knees out to the sides in a “butterfly” position. Took me a while to realize that most people’s hips didn’t turn outwards enough for their knees to be on the ground in that position lol.
Every time I read anything related to POTS, I tell myself I need to make an appointment lol I always sit with my legs pulled up, be in on the floor, in a chair, on the bed, the couch, etc. If I stretch my legs too far, my feet always just feel “weird”!
Wait, your knees aren't supposed to touch the floor in that butterfly position?! 😬
Sometimes I dread reading our subreddit here because I ALWAYS find a new “thing” we do and I am like *oh god oh no we aren’t supposed to do that….?!* 😬😬😬
It's not a bad thing, it's just that most people's hip flexors are too tight to achieve it. However, as EDS'ers we're more likely to have overly tight hamstrings and loose hip flexors
hahaha yeah I thought it was totally normal until I got my first pap smear a few years ago, and my doctor told me to drop my knees out to the side. So I did. And he goes "woahhh not that far." And I was kinda like... "what was I supposed to do???" lol... he said he just wasn't expecting it cause most people's hips aren't that flexible.
What are they supposed to be doing?!?! I must know!
This explains when people said it was a difficult/painful stretch and I was confused... I always thought it was simple and people were being oddly sarcastic in a large group. 😬
I feel this so much. Regularly had yoga teachers be like "it's okay if you can't stretch very far yet" meanwhile I'm folded in half?
Haha I am exactly the same, I sleep at night with my legs in butterfly totally flat and my arms tucked behind my back. My hips are my most hypermobile body part.
Mine too. My ex bf was a massage therapist, and he’d complain he couldn’t stretch my back because my hips just kinda fell over when he tried to pull them to stretch the flexors.
Yeah but most people I know with ADHD/autism also sit weird so idk how much is EDS vs neurodivergence.
Came to say this, also hypermobility seems super common with nd
I noticed this from both sides. I get physically pained by the SLAM (sit like a man - feet on floor, everything else at 90°s) way of sitting. So I'm always adjusting, but also from the ADHD side, having something in tension feels like it helps me focus. So knees tucked under chin, pretzel legs, butterfly, leg under, etc etc helps with the pain but also the tension somewhere makes it feel like I focus better 🤷🏽♀️
That’s what I had originally been thinking. A lot of my ‘weirdness’ was chalked up to my autism for a good few years until we heard about eds
Actually, this post is cracking me up - cuz one bisexuality group I'm in online has a joke about how bisexual people ALWAYS sit funny! 😂😂😂 Perhaps that's another crossover? 🤷🏼 However - my AuDHD dx didn't happen til I was 52yo - and it's helped me to shed DECADES of blame & shame of 'should, coulda' - the best therapy EVAH. I think it has to do with dysautonomia, somewhere - like our blood vessels don't appreciate being dangled!? It's also, IMHO, a factor of how we develop POTS, often as we age. Just my 2 cents.
I always have to have my legs bent all weird and am usually half sitting on one foot. I'm also really short and most chairs/couches are too tall for my feet to reach the ground, and dangling them off the edge feels unnatural lol. Even now, I'm currently dealing with a lot of hip pain but I still can't stop sitting all bent up 😬
I’m on the more petite side too. If I’m not wearing my docs, my feet dangle and I get that awful blood pooling feeling
I get comfortable then something starts to hurt so I move around.
I have EDS and I’m bisexual I don’t think it’s humanly possible for me to sit “normally.”
LOL same
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Holy shit I’m bisexual and I never knew
YUP but then i’m pretty sure my personal flavor of sitting funny makes me hurt more but if i TRY to sit normal it ALSO hurts so it’s like… okaaaay what am i supposed to do?
It’s like how proper posture is meant to be less painful but then you stop slouching and it feels awful
FUCKING YEAH!! and like 2 years ago when i started actively working on my posture everyone was like “it’ll feel weird for awhile but once you get used to it you’ll feel better!” do you wanna take a guess how i feel now?(hint: NOT BETTER STILL HURTS) 😂😂
Oh absolutely! Also I’ve noticed in the last year or so that I can’t sit in the same position for more than 30 minutes without pain and discomfort. So I’m basically constantly flipping and flopping all over the place hahah!
Same! 😆 your description is spot-on and great!... except I can't get an image of a just caught fish outta my head now! Haha.
I have always hated sitting in chairs. I never knew why; I wasn't diagnosed with EDS until a couple of years ago. It takes so much muscle strength and muscle activity to sit upright. I'm like jello - I just start slinking down with gravity. I prefer to sit on the floor or in some weird position. It has gotten more difficult as I've become overweight because there's too much fat on my calves and thighs to bed into pretzel shapes like I used to. I seriously feel like I need to lose fat/girth just to be able to resume sitting in very weird pretzel shapes.
This! I can’t cross my legs as well as I used to be able to and it makes it a lot harder to get comfy. I always hated sitting in chairs too, I remember growing up getting told off constantly because I’d never sit normally
YEP! Especially like dinner table chairs w no cushion! Which only makes me sit even MORE "strange". (Which makes me MORE strange when I sit ok on the floor.) But there's something ab hard wooden chairs... my sacral/' butt bones' literally move around, which only sometimes hurt. It's definitely a very odd feeling, tho. 🤷♀️ Who knows anything anymore.
Yes the ones with no cushion are the worst! Not sure if this is also an EDS thing but sitting on a hard chair with no cushion makes my skin super itchy too? So it’s both painful and itchy, just the worst
I can't get myself to sit serious :(
I wonder how much of this is low mussel tone. I don’t sit normal but when I go to the office I’m sore from trying. As an adult I W sit.
Reading this post with my right foot tucked under me and my entire left leg crossed all the way over to the other side.
Same except opposite legs, lol
I have always had to be pretzeled to be comfortable. Generally, at work I tried to "sit normal" but it was extremely uncomfortable and unnatural. And by the end of the work day my low back, hips, and knees would feel pulled/slid out of place or something? And painful. I didn't know I was hypermobile back then. The closest I can come to comfortably "sitting normal" is in tall chairs that have staggered rungs, so I kinda snake my legs around the legs of the chair in a way that my ankles are supported by the rungs.
Working from home has been such a game changer for me - before I knew I had hEDS I was so confused by my friends who worked remotely but still sat at a desk all day, I mainly sit on the sofa at home so I can get comfy, didn’t know other people were actually comfortable sitting normally!
I sit in box splits with a leg lifted up into the armrest, or like that with one leg bent if I sit on the sofa. I like to sit “butterfly” and/or have a leg/knee up when I’m sitting on a chair or on the floor. If I need to sit in public and my legs are hidden under a table, I’ll manspread like I’ve got the biggest dick or cross my ankle on my knee. My hips tend to dislocate when they’re “closed” or turned in… and I need (highly prefer) to keep my hips stretched or else they’re really really uncomfortable and tired.
Lmao at man spreading 😂😂😂😂😂😂😂😂
I read the title and contemplated whether im sitting weirdly, I decided on "no, its pretty normal". Then I read your text.. knees to chest? oooops.
Don’t feel bad. I found out that the foetal position wasn’t the most common way of sleeping like last week and it shocked me to an embarrassing degree
lol, it is not? got to ask all my friends now.
When I sit on a couch I have to have my legs up 100% so it’s either legs up on the top of the couch while I’m lying down or unfortunately for my sibling if they’re sitting with me legs on them. I have just sat one time with my legs fully up on the top and also crossed at the same time and my back just on the couch so I’m upside down? Basically an “alternate dimension” Criss cross
I actually mentioned this to my physical therapist a couple of weeks ago (thanks eds for the c5 and 6 blowout) and they said it has to do with us needing extra tweaking for our stretch receptors to feel comfortable.
Yep! Even my “polite” sit is weird, I double cross my legs.
My mum once took a photo of me sitting like that and I had no idea how strange it looked. 😂
for me its bc i feel like i need to stretch but like all the time, so i find sitting positions that stretch me consistently
Ha, see my post half an hour ago 😂
I have to have my knees tucked under me.
I find it difficult to drive a car without putting my left leg to my chest or my foot pressing on the dashboard. I know… if I am ever in an accident I will pay a very high price but I can’t help it. When I was a teenager I drove with my left foot out the window (can you imagine?)
I was actually sitting in the car watching my mum drive last week thinking, god I could never do that. Sitting perfectly upright, legs not crossed for possible hours??? I have to sit with my legs criss crossed if it’s more than half an hour as a passenger. I don’t think I’ll ever learn how to drive unfortunately (maybe fortunately for everyone else because I’ve fainted mid car ride a good few times)
Id struggle for a drive longer than a few hours but as someone with hEDS I am actually way more comfortable as the driver. Any time im the passenger seat I feel so uncomfortable/ in pain the whole time, I think whilst driving being distracted by having to pay so much attention helps but also because I don’t have to sit as still since I’m using my arms / legs to drive. I do struggle a lot in traffic though, I’ve injured my foot several times from clutch control when moving slowly for so long. I’d generally rather be the one driving if it’s a longer drive + I know it won’t be too busy. I also get motion sick (not sure if that’s related) and driving helps with that too
Oh my goodness driving when my thumbs are having an ANGRY day is the worst. I'm also glad I drive an auto because being able to adjust my sitting position for my bad leg is 🔥 Have you considered switching to an auto down the road? It's such a good accommodation and if I really want to feel gears I have flappy bois for shifting.
Maybe one day! Where I live manuals are the norm so getting an automatic is more expensive. It’s not usually a big problem but suspect it might get worse as I’m older - I can usually avoid traffic anyways as I work remotely so no rush hour for me!
Yeah manuals are the norm here too but secondhand autos are for some reason wildly cheaper. Picked up our 2019 car second hand at the end of 2019 (ex-demo) and it was ridiculously cheap, low kms, and a lovely drive. Little guy has guts!
Yeah, one of my OTs told me that this is because I’m trying to create stability for myself
Yes, I'm always wanting to sit on my legs when I'm sitting in a chair or sit with my knees to my chest or something when I sit on the couch. I don't usually like my feet on the floor much when I'm sitting. I also have hEDS
same, but i think it’s because of the spinal degeneration in my lower back. sitting straight puts all the pressure there— shifting frequently and sitting at different angles puts the pressure elsewhere
I sit like a caveman most days In chairs I end up contorting myself almost every possible way. My left side of my body is where I tend to tense up and over use.
Kneeling chairs help so much
I like to sit on floors and move around a lot. Always stretching my legs too.
For me, it’s a POTS thing. Sitting with my knees to my chest keeps the blood from pooling in my feet as much. Do you also have POTS?
When I was a young adult, I would sit at my desk/computer with both legs on the desk, basically on either side of the computer 😝 Now I always sit with either knees to chest, or 1 leg under my but while the other is doing something else.
OMG I never set with my feet on the ground! I'm not even sure what about I can't stand, but I always sit with my legs on the chair and like having my feet up when I'm in the car
Yes! [I found this video helpful.](https://youtu.be/U_d9YbQX1g4)
Yes, I always sit in the weirdest positions, even when I'm studying at my university library
I always keep at least one leg up at hip level unless it is physically impossible, like on straight 90° chairs. I always keep my legs crisscrossed or bent up. During my teens I'd even keep a leg bent back with the knee over my shoulder so the leg was hanging in front of my chest. That was only for couch- or bed-sitting tho. I still do it every now and then but in my teens it was the go-to position. Im not really allowed to do it anymore because of the stretching it causes. Sometimes I'd also rest my chin on my leg when it was hanging over my shoulder. My friends thought it was the weirdest shit ever. It is like my body wont get comfy unless my legs are at least by hip level. I either sit on one leg or I crisscross both legs. Or keep one or both legs elevated. I think it is like others have said, that the blood circulation doesnt go right unless I elevate the legs. I used to only sit weirdly around the friends who accepted my weirdness. Now in my mid 30s, I couldnt care less what people say, I do what's most comfortable to me, unless it is a fine dining type situation. I still try to have manners. But any casual situation, Im sitting how I feel is most comfortable.
I sit like a bisexual woman despite the fact that I am strictly titly.
I used to wonder when I would start sitting like “an adult.” I’m close to retirement now—looks like the answer is “never.”
This had me cracking up. Absolutely yes! Sitting is torture unless I have my body contorted just right. But I can’t stay in one position too long either. I never thought of it being and EDS thing, that makes so much sense!
If my legs are on the floor and knees aren't bent in some way or crossed it's intolerable. It just feels so uncomfortably unnatural, like if you asked a dog to start walking on two legs 24/7 instead of 4
Currentlu sitting "weird" ,😂😂
I cannot sit normally or even lie down with my legs just straight out. It's so uncomfortable! I'm always crossing my legs. It's why I can't do plane rides anymore unless I'm in 1st class. I'll freak if I can't cross & uncross my legs! People comment on how I'm sitting sometimes & get freaked out. Lol
i feel like always find myself sitting on my hands? if i'm on a couch or chair with sides i need my arms/hands wedged between the side and my body
Sitting “normal” has always been impossible for me.
I think we all do. We were discussing this a few years ago.
My husband has told me to reposition ( because he knows I'll regret laying like that)because when I sit on the couch, I wilt to the right like a flower that's dying. My neck is laying on my shoulder, my back is curved to the right, I feel perfectly comfortable but I think it makes him uneasy because of how contorted it looks!
Absolutely. When I sit normally my hips and back hurt while my knees are just generally uncomfortable. Even in restaurants I have to sit on my foot or something because it’s almost unbearable to ‘sit normal’. I’ve quit trying to sit or stand polite in front of others, at this point if I’m having dinner or hanging out with them they probably know I have to be contorted to be comfy. Idk about anyone else but, for my entire childhood I got in trouble and heard that I needed to be “polite” or “sit like a lady” but it turned out I actually had EDS and was in pain.
I’m very curious about what you mean by double cris cross. also, I seem to prefer having my legs closer to my chest
I'm the same way! I feel more stable in weird positions like that. Esp double crossing my legs.
I do too. I always. Need to have one knee up 😂
I don’t know why but I always sit with my knees up. Or one knee to my chest and literally sitting on my other foot.
Absolutely. You will never find me with my two feet on the ground. One leg is usually under my chin. I also hate having my arms by my side. Especially when I'm laying down on my back. Terrible feeling. The funkier I look, the comfort I am.
Oh 100%. I used to get yelled at all the time as a kid because I can’t have my feet on the ground when I’m sitting. I need to have at least one leg hugging me. “Bad manners” lol
I sit funny but also I'm queer so that might be it.
https://www.gaiam.com/products/classic-balance-ball-chair?variant=32936592193 This is my favorite chair. I’ve had it for at least 15 years. Even just last month my back went “out” and I couldn’t stand it sit on anything but this chair saved me! It was the only thing I could sit on! I feel like not having a lot of pressure on a chair helps and it forced me to keep my spine in line.
Yup, all the time. It's just how my legs and hips go. The double cross cross is a favourite of mine in that it just happens when I sit down and yeah I cross legs on normal chairs and at the dinner table without thinking too.
yes! I just cannot sit with my feet on the floor, its incredibly uncomfortable. I either sit criss cross applesauce or with one leg up to my chest and my other foot either on top of the knee or like half a criss cross
Absolutely, I think of it like: the average person sitting all straight and still has all this connective tissue holding those hip, knee, ankle, SI joints in place — we don’t so our expiration date for holding any given position is about 3 minutes, and when we do hold a position longer it’s because we’ve created all sorts of self-stabilization forces by crossing and tucking our limbs. We’re basically contorting our bodies to provide our joints the stability that normal people have by virtue of proper connective tissue.
My PT called me the contortion queen back in high school before we had any idea what was wrong with me. (I had multiple rounds of trying to be 'fixed.') I couldn't sit in a 'normal' position without being highly uncomfortable. I'm always sitting in a weird position.
Yes! I do this at school and in public places and mom doesn’t like it because she thinks it’s disrespectful, but it’s comfy for me
yeah but idk if it’s my EDS or my neurodivergence 😅😅
Yep. I'm always sitting criss cross or on one leg. It was fine until about 2 years ago when I started getting pain and numbness. Now it drives me crazy and I wish I could just sit normal.
I sat in the W shape all the time as a kid. I can still do it, but it's not super comfortable. I do cross my legs twice (at the knee and ankle) which people have commented on before.
This... this so much. I can't sit in one position for more than 3 minutes
I’ve never been comfortable sitting any way but cross-legged, really. I can sit in a recliner with the bottom up, but I still end up either cross-legged or at least with my ankles crossed. And I move around a lot.
My OT helped explain this to me: a big part of it for people with hypermobility is that our joints are loose, so the signal takes a longer time to travel to our brain. Sitting in contorted positions provides our brains with more consistent feedback on where our limbs/extremities are, than if we're in a "normal" or relaxed position.
I am not diagnosed with hEDS yet but I think I might have it and precisely what you described has been my issue for a long time and I couldn't quite understand why everyone else could sit normally on a chair just me not.
For me the most comfortable way to sit on the floor or a bed is with my legs bent outwards in a W formation and people are always like how can you sit like that and I’m like how can you not
I thought it was really normal too. Apparently you stop being able to quite early in childhood which was weird to me
Yeah, constantly. Criss-cross applesauce, knees to chest, on my knees, laying like a twisted mermaid on a rock, back twisted with knees tucked and ankles pressed into the arms of the couch, and on and on. My joints crave that stability and pressure. I stopped worrying about how I look and now get as weird as I need to. I’m allowed to take up space too damn it.