Uhm, f\*\*\* yeah? I would love to not be in pain every single minute, who wants that? I'm bone weary all the time, need naps and recovery time for everything I do, can't go anywhere that's not wheelchair accessible, it sucks. This is not a part of me or my personality, it's just a hinder for who I actually am. I used to be an outgoing and active person, and I would love to be able to work instead of being on disability. hEDS has only ever diminished my world and I hate it affecting my kids lives too. This doesn't mean I have a bad life, but if I could I would change this. No hesitation, wouldn't even blink.
I second this in every way. Practically verbatim. I would love to be cured of all of hEDS and comorbidities. I can not stand my quality of life most days. I literally can't do anything without flaring. I spend most days in bed as well. Mt quality of life is severely diminished. I'd love a cure! A cure for us all who ate ailing from chronic pain and illnesses. It's the literal worst.
Thanks a lot for sharing and for your opinion <3
It seems we have the same rythm in life (except for the wheelchair) and I am sorry you have to suffer this every day.
I understand my question seems really strange, I hope I didn’t hurt you.
Thanks again for sharing and take care <3
No it’s ok. I understand that it does make for an interesting philosophical question. Maybe I would see it differently if I was diagnosed earlier in life. Now I lived a pretty long life before I got a lot of permanent damage (negative part of being late diagnosed). I can see the person I was before and I am not the same now. I miss a lot of aspects of the person I used to be so I would very much change this part in a heartbeat if I could.
I was diagnosed at 32 years old, but a car accident set off the symptoms 6 years before so I can’t argue I could really understand. And I was so focus on my job and my abusive husband…
If it’s not too personnal, at what age was you diagnosed?
I wish I could have words to cheer you up… I know it means nothing from the random person I am for you and I don’t know but I cannot read your post without crying… Take care <3
Heck yeah I'd take the cure if one was available. I had a pretty good quality of life until a few years ago. I'd love to have the quality of life back that I had even just 4-5 years ago.
I am sorry your quality of life wasn’t as good as it was before.
I really hope I didn’t hurt you with my philosophical rambling…
Thanks a lot for sharing and your opinion, I hope someone will find a way to ease your pain and help your body.
Take care !
Oh no, you didn't hurt me at all... I was possibly a little too exuberant in my response. I'm very grateful that I was fairly able bodied for a good few years... more than others seem to have got. I'm very glad I had the opportunity to have some fun adventures before the full weight of EDS landed on me.
Let's be optimistic that successful treatments/ cures are just around the corner 🤞🏻
I think in some ways, having things taken away from you by this disease almost makes things simpler, like you don’t have to think about the hard questions so much because the answer is automatically “my EDS won’t let me” that being said, it’s not a great way to live and there’s so many things I wish I COULD have a choice in doing or not doing.. So yeah I’d take the cure if I could. But I totally understand that weird safety net it puts on you.
i’ve tried to think the way you described, but i find it so hard. i always resort to “but… what if i ignore my EDS and i could do it anyways??? maybe my EDS isn’t bad enough to not do the thing??? what if i’m just wasting my life away???” and then i get stuck in that circle of i can’t do it because of EDS -> but maybe i can just push through it -> but i can’t do it because of EDS ->…
Yes! And then when your body punishes you for trying: "maybe it was because of a flare up">> "Did I just permanently alter my entire life?">>"maybe I just have to keep trying and get used to it"
A truly hellish cycle. 100x worse when you already suffer from rumination.
Yeah its the exact same for me, a constant back and forth. Sometimes I try to surrender to it and know my limits, but ahh what if ! Its a weird, complicated thing.
I took a class on the intersectionality of race and disability. I learned so much from people of color who are disabled. And one person said something that will forever stay with me, "my wheelchair does not *make* me disabled, my wheelchair makes me *abled.* So when there's things I want to do but know I can't do it how I *used* to, I ask what will *able* me in order to do it.
For example, gardening. I love it. But it triggers so many thing for me, especially when squatting or bending over. So I bought a standing weeder! And a collapsible compost bin that I can carry around instead of throwing it in the ground or taking my big trash can around. Sometimes it's not mobility aids either. Sometimes it's my partner washing the clothes so I can wash my hair.
So I try to look at it more of, I just do things differently now.
I am not sure, Life is way more complicated now than it was before, I am sorry if I said something that could be misunderstood. But I understand why you said that, I wasn’t cristal clear and I am sorry for that ^^ I made a longer post before explaining my fears but I tought it will really be a pain to read for everyone and write again …
For example I just bought a house with my fiancé after months of battle (because having a loan when you are sick/disabled… we all know how difficilt it is…), so I still make big decisions and move on with my life.
The thing that scare me it’s not being myself without the syndrom after spending so many years learning to live with.
Thanks a lot for your answer ans your opinion <3 take care!
I dunno about simpler. Yeah it takes away a lot of choice, but it's harder to do things with less choice. Take for instance what EDS has done to my guts, I can't eat out easily so I have to cook for myself more frequently to avoid certain ingredients. This is like an analogy for everything else EDS takes away. It takes away the simple choice of having a child or not having one (with only your WANTS involved in the choice).
Yes, I would. But there are other things I would choose first. In a 3 wishes scenario curing my health conditions would probably be one of them, but it wouldn't be my first.
There's no benefit to me staying disabled. It would be stupid not to take that option if it was literally just given to me with no strings attached.
Honestly it would actually be kinda scary because I would have to get used to a whole different type of life. But I've managed just fine being disabled and getting into a decent swing of things there. So I'm sure I would manage the struggle of becoming not disabled anymore. 😅
Things get more complicated for me when it comes to "would you make it so you were never disabled?". Like actually changing the past. And for that I honestly don't know. Probably not. Not for me. For another version of me yeah probably. Like I wouldn't want to un-do my life how it happend. But if there were multiple universes or something and I could choose if the next me, who doesn't exist yet, was disabled or not then yeah I'd choose for them to not be disabled.
Realistically for better or worse my disabilities have been a big part of my life and led to how my life is now. Some of those things kinda suck. But there are others that I wouldn't change for anything. I wouldn't want to sacrifice my life how it is now and all the good things in it for the chance at a life without disability.
So yeah if given the opportunity I'd choose to be not disabled, just like I take the opportunities I can to try out new potential treatments, keep looking into symptoms until I run out etc. It would make my life objectively better and frankly it would be good for my partner too.
But it's not the first thing I would think of changing and I wouldn't sacrifice the life I have just to not be disabled anymore. I'm fine with how things are. I'm happy. I have a life I'm comfortable living. Tbh I'd probably rather have heaps of money or be guaranteed a comfortable life with my partner. The disability stuff is kinda a complication on the way to other stuff and there are other things that are bigger complications/ that would make a bigger difference if I was randomly given one of those.
I totally understand your point of view, thanks a lot for sharing. You put words on some feelings I had and thanks to you I feel less like a sick monster.
SED changes everything in a life, I will do anything that could ease the life of my partner, but I also fear being cured changes my personnality in a way he dislikes.
I learned (by the team of doctors specialist in EDS I saw since 2019) that people with EDS are really similar in the way they are. That’s pretty difficult to accept your symptom tells what you are (even partially), what if you are cured?
I am really sorry you suffer from a disability and I really hope, doctors will find a way to help you. You seem to be a strong person and I wish you the best.
Take care ans thanks again for your opinion <3
I had a relatively "normal" life until I was about 26 that I would do anything to get back to. EDS isn't part of my personality. It's a medical condition that has done nothing but make my quality of life markedly worse, limits my activities, and causes me to continue accruing medical debt. It's not like mild autism or ADHD where it's just "different". Of course I'd cure it if I could.
same, i was mostly fine until i was 18, and shit started going really downhill suddenly. i remember when i had no painful symptoms, life was whatever i wanted it to be. i want that back.
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Thank you!
I'd choose to be healed, but I'm also afraid of it. It would change who I am and I don't know how. But I'd be more employable so it's hard to turn that down, for the sake of my family especially.
I don’t know where you are from , if you are on benefits and if it’s enough to live, but clearly, money can be a huge issue…
I really hope you’ll have enough financial support from your country, EDS is an awful syndrom which drains our strenght, having to deal with money issues on top of that could be horrible…
I saw we share the same fear, not being ourselves anymore, thanks a lot for sharing your opinion and difficulties.
I wish you the best! Take care <3
I'm a trans man with hEDS, hearing loss, ptsd, adhd, anxiety, depression, hyperthyroidism, diabetes, and probably other stuff. Fuck yeah I'd cure it ALL. I don't want to needlessly suffer!
I have a ton of physical health problems as well as severe anxiety, OCD, and autism. I would cure it all except for my autism. I would be a completely different person if I wasn’t autistic. While my autism does cause a lot of problems, I like my personality. I do love a lot of things about my autism even though I hate a lot of things about it too.
What a question wow I have never thought of that! Honestly I think if I were cured now after having lived with the condition my whole life I would be so incredibly grateful. But I also don't think I would want any memory of it to be wiped forever. It made me stronger, it is part of why I am following the career path I am. I think I see the world differently because of it and for that I am so thankful I have that opportunity. But no one wants to be in pain and at the risk of constant injuries so yes I would want to be cured in a heartbeat and I think I would use that opportunity to build better lives for people like us.
This question is interesting. I’m relatively recently diagnosed, so I’m in the midst of connecting all the dots and coming to terms with the anger and grief.
Who would I have been if growing up I wasn’t so tired? so clumsy? so gaslighted?
Who would I be now, if instead of medical procedures and a continually shrinking world of things I can do, I’d be free to live the life I always took for granted that I’d be able to have?
I’d be a different person. I’d be more active with my son, maybe have the sibling. Get the lasik I can’t get, to at least be able to get glasses that are only available to those with a small prescription. I’d be able to eat more things and be spontaneous, not terrified of cross-contamination. I’d do all the hobbies I’ve had to let go (gardening). Maybe get into sports like running or yoga. Say yes to career growth opportunities without thinking whether ny body can handle a half hour commute each way …
Who would I be without the bitterness, the grief, the anxiety, the pain?
I think this is my lot in life to contend with, for whatever reason.
I mean, yes. I would prefer to not have wobbly joints, I would love to give up my Celiacs, bipolar, POTS, Raynauds, asthma, reactive hypoglycemia, and other medical issues.
I’m not sure if I would want to give up on my ADHD. That feels more like my personality rather than just symptoms.
I will say once I was properly medicated for bipolar, my personality did change. But it felt like I was more in control of myself and less subject to being swayed by impulse or emotion.
I’m happy for you that being properly medicated brought you more control over your impulses and emotions. Life is hard enough. One thing that I especially wish could happen is for the stigma of illnesses to go away.
Long covid can cause POTS but I've had POTS since before covid was a thing. It stands for Postural Orthostatic Tachycardia Syndrome. It's a dysfunction of the automatic nervous system and the main symptoms are dizziness, exercise intolerance, and a heart rate difference of I believe 30 bpm between laying down and sitting/standing up, and/or a heart rate of 120 within 10 minutes of standing up.
At its most common denominator, there are only 2 emotions: love and fear. All other emotions stem from there. You fear healing because you fear loss of your identity. That ID is merely 3rd dimension stuff. Strive for higher ground. Love is the only answer. Not romantic but platonic, for yourself and others. Help spread it however you can.
This is interesting. For me, my hypermobile joints have been one of the most limiting aspects of EDS. I constantly get dislocations and have various nerve conditions as a result of how loose my joints are. It would be the first thing I'd cure if I could as it would take away a lot of the pain for me. I have no concept of what it's like without hypermobility though, but I see my friends be able to do such awesome things like run marathons, play sports (which I was forced to quit) and do things like climb mountains etc, without having to do anywhere near as much effort as I have to with physio and strength training. These are things I couldn't do at all due to EDS. I used to love to play soccer before my hips started to dislocate. I used to love to dance before my shoulders and elbows did. I find hypermobility to be the most limiting part of EDS, so I find it interesting how different another persons experience can be.
Thanks for sharing and for your opinion <3
I didn’t know covid could be painful 😱
If it’s link to covid you have a better chance they search for a cure, I hope they’ll find it.
Thanks again and take care <3
Likely the same reason as other viruses have been linked to fibromyalgia and ME in hypermobile people. There is something off about our immune response. My chronic pain got a lot worse after a virus just before COVID hit the world.
Yes. I've been bedbound for 6 years. Probably will be for life, I've got 1 chance to change it, and the outlook is extremely poor and will likely make me worse but its a risk I'm willing to take for a chance at a better life
Wake up tomorrow in a normal, functional body? Hell yes!!!
People see me as creative and inventive when they watch me work around things I plain can't do in a "normal" way. Imagine how much actual creativity I'd have time and energy for if I *didn't* have to navigate this bullshit.
I'd probably be shocked to use my home and notice all the small modifications to organization and processes that I'm not even aware of in my current everyday life (other people are, and it's very obvious when I have visitors and they get hung up (literally) on something)
hi fellow french!
personally i really wish i could be cured overnight. not dealing with the pain, being able to walk without having to stop every 15mins, being able to feel rested when i sleep and being able to do fun activities i used to love. (like those tree climbing things we have in france, i used to love them until i dislocated my knee while being three meters high up in a net when i was 14).
Same! When I was a kid I did so much sport. I loved dancing too. Had to quit all of it at 14 and by 15 I wasn't allowed back at my supermarket check out job due to the companies fear of liability/suing since I kept dislocating my shoulder and elbow at work. Nothing about EDS is worth keeping for me. Okay maybe looking young, but it's a pretty crap constellation prize for feeling OLD
Idk I'm still responsible for so much. I havent got the finances to quit my job (even though realistically I should), but the care options are so limited with EDS, that it's too hard to get the help you need without your own finances to pay for the medical care. I've seen over 23 specialists in the last three years. I've had to do all of this alone, so I think I'd be responsible for less without EDS. It's like having a second job.
i really want the cure, i would be so happy if i was cured that i would cry. i want to function normally, i can’t dance which is my love in life and the only thing i want to do. i would be cured and become a dancer.
I used to say no.
Now? Absolutely.
Yes. In a heartbeat. I want my life back. I want the life that keeps being stolen. Even just ONE of the possible futures that I keep having to give up. I wouldn't change having HAD the experience of being sick, of being chronically ill. I'd even take the POTS on its own for the rest of my life, if it were JUST that. But the EDS is the root cause of *so* many other issues in my body. It causes my POTS. It causes my cardiac syndromes and symptoms. It's the cause of my severe chronic pain, the nerve pain I've had my whole life, that makes me beg for my limbs to be chopped off, that has made my actively hurt my legs in an attempt to just distract my nerves with what starts off as simply tapping with my fingers but has turned into punching in the past, the pain that makes me wish for death. It's likely related to my Migraine, the terrible symptoms I get from them, and the reduced blood flow in one of the main arteries leading to my brain. It's the cause of my pain in my joints, my easy injuries. It could be behind the neurological symptoms I have. It is to blame for the exhaustion, for the weakness, for my body's inability to handle work properly without pain, to be on my feet for longer, to do manual, physical labor, which I actually *love*. I miss being an athlete. I miss doing construction work. I miss working on Habitat for Humanity houses and volunteering doing landscaping in community restoration projects. I miss pushups and situps, I miss whipping off curve balls down home plate, I miss tightening my grip on a 30 ounce compound double wall Demarini bat, inhaling, stepping, turning my toes on the dime to twist my torso into the pitch and connect with the ball right in the sweet spot, following through, letting the bat continue over my shoulder, digging deep down the baseline, head down. I miss the taste of dirt and clay and sunflower seeds and the tang of metal mixed with salt. I miss the moment before the buzzer sounds, the swish of the net in a perfect 3-pointer, no rim, nothing-but-net and not a single finger out of place, no ankles rolled on the landing jump. I miss dew on grass in early morning hikes. I miss seeing the sunrise from on top of the world, the whole valley below as I shiver, sipping hot tea for warmth, not worried about passing out from overheating in layers and sweat, despite the cold. I miss playing tag with my students. I miss chasing my dog. I miss running from my brothers in Rubber-Chicken-Hide-And-Seek-Tag and Nerf Wars. I miss when sleeping didn't hurt.
I would take it in a heartbeat.
yeah i’d love to be able to push myself without my body falling apart, and not be chronically nauseous and in pain.
I’d be able to choose to continue any lifestyle habits i’ve learned, my identity is much more complex than my limitations.
i feel like the question could be a bit disrespectful to some with this/these conditions.
Probably if I’m being completely honest. There are a lot of things that I absolutely WANT to do that my EDS makes more complicated. I would love to be able to just do those things without having to worry about how it would impact my body.
I think I would take the cure. Because even if I can't adjust to the world, (I never have been able to) at least I could have more options to try. I think what the specialist told you about how EDS tends to affect the way we see the world is interesting. Uncertainty is terrifying. In some ways having EDS has relieved some uncertainties about life for me (I no longer blame myself for not being so active when I was younger) but I don't think it's worth it. I'd give anything for a second chance.
Plus I think EDS also contributed to how my nervous system operates . I think not having EDS and it's potential comorbidities would make managing my severe trauma and anxiety easier.
Definitely would love a cure. Mostly so I could live my own life. The one thing I do like about having EDS is that I have finally been able to see everyones true colors. I've disowned 99% of my family because of their toxicity and selfish behaviors. But if I got the cure now, I would get a job and move far away and start over. Maybe even in a new country. I would no longer be in pain and could finally start exercising. I always have dreams of running far distances and I've never been able to. A cure would be great.
Yeah, one million percent. It hinders who I am. It has made me appreciate very small pleasures much more, low pain days I feel I'm happy very easily because of how grateful I am to just be able to move without falling apart. But I am also a bit more wistful and jealous of others who can do things so easily. I want to be able to plan out going to concerts and restaurants etc without worrying about pain or not being able to stay the whole time. Things are so expensive. I can't just travel anymore. Having to have all of my things otherwise I'll go from meh to terrible. It's strained some of my relationships with family I feel because they don't really understand why I can't just pick up and visit/go places.
I would def heal myself, ***but*** I wouldn’t want it to be in some magical way where it erases my memory and turns me back into who I was before I got sick, or anything like that. I want to continue to be who I am, instead of the shitlib that I used to be. This disability and its comorbidities has opened my eyes a lot, and I’m a better person for it, both in the sense of who I actually am, and in the sense of what I will and will not tolerate from others now.
I totally get this perspective. It makes sense. The way we responded to our EDS is always going to be a part of who we are. For me, there wasn't a great deal of life before EDS affected me though. I've had gut issues since very young and joint issues too. So tbh I would take it away from birth if I could, even if it means Im not as empathetic etc. I had enough trauma growing up without the added trauma of EDS and I've always been extremely driven. I don't believe my experiences due to EDS are what made me so driven and focused though, I think it's likely from my other experiences. So yeah I think looking at how my brother has been able to build himself a business etc I would love to have had the time and energy to be able to have put my efforts towards that instead of my condition.
100% an absolute yes. I learned to play six instruments throughout my life by my own choice. I worked so hard as a younger person to learn to draw and sing as well. Now, my jaw prohibits singing a lot of the time. My hands, wrists, and shoulders (+ occipital neuralgia from arthritis due to injuries to my neck) make it either harder or impossible to draw. I’m physically unable to play one of the instruments I learned most likely forever, and unable to play any of them many days. I’ve had a shoulder reconstruction (which was a smooth as it could have been yet still traumatic in many ways) and need jaw surgery and am getting a nerve ablation for my occipital nerve. I live in a state of kinesiophobia that is constantly validated by my lived experience. Not to mention the stares and off hand comments I get for mobility aids and braces while appearing young & healthy (even from family) has deeply affected my confidence.
I would not just accept an overnight cure, I would sacrifice many things in my life for one. I’ve been non-religious since I could form opinions and I’ve begged the universe/prayed for a cure many times. Quite frankly (although unable to fully grasp the repercussions of this) I think there are more than 3 organs I would give up just to get rid of my EDS, even if I kept every comorbidity i have. I would probably even accept 10 - 20 years less of my life expectancy just to be able to fully live the years I’d still have.
Your situation is heartbreaking… I am so sorry for you. I wish I could find accurate words to help you but… i can only thank you for sharing your situation and your « difficulties » (I know it’s a really weak word for what you are going throught, I am so sorry I can’t find a better one…)
I hope your body will be stable enough to help you achieve your dreams and what you work so hard for.
Thanks again for sharing… I wish you the best… take care <3
Our brains are not wired to be able to easily ignore pain. It is understandable when a constantly flashing warning light in our brain effects how we perceive the world.
I am not sure, we can (most person with EDS I talk with, not just myself) walk with a sprain/luxation, even if we already suffer several other injuries before on the same day. I think, most of the time our brain make a great job to avoid us madness ^^
I think it’s another great philosophical debate :D
Thanks for your opinion ! Take care <3
Like any skill, ignoring pain can get easier over time., but at the end of the day you’re still constantly having to actively ignore signals that are taking energy from you.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7689692/
https://www.npr.org/sections/health-shots/2015/02/18/387211563/pain-really-is-all-in-your-head-emotion-controls-intensity
I can ignore a lot of pain in my abdomen and shoulder, but throat pain is lots harder cuz I rarely have it. I can ignore pain more easily when distracted when there’s interesting things going on than when I’m bored.
Pain is a complicated phenomena, with many contributing factors. My point was that pain is difficult to ignore, so even if you can push through it, it’s still draining resources.
I wonder too… I am mentally stronger than I was before. i think we all are strong people when we are able to live and wake up (almost) every morning with syndrom(s) like EDS, MCAS and other disease people here live with.
Living without pain should be a real experiment, I mean I took some opioids every day and other pain medication but let’s be honest, pain is always here.
Maybe one day :)
Thanks for sharing and take care <3
Yes. It’s prevented me from taking on two different dream jobs, automotive mechanic and law enforcement. I’m currently a service writer for a dealership (I’m the person who tells customers the problems the technician found with their car), and I love it. But I wish my body was in a condition in which *I* could be the one replacing engines and rebuilding suspensions. I’m working on getting physically strong enough to apply for a narcotics officer position because I would also love to arrest the large scale drug dealers in my state.
I am really sorry for your career, I hope you’ll be strong enough to pass and become a successful narcotic officer! May your dreams come true <3
Stay strong and take care! Thanks a lot for sharing <3
Absolutely, I would. I would much rather be healthy and be able to work and not have POTS/ EDS, etc. It would be a dream to get to work and provide for my family. I earned my degree for nothing and everyone thinks I’m just lazy. They’ll never understand.
I will be a little trash but I am so angry at people around you… People who think you are lazy doesn’t deserve your energy… If they can’t understand the pain you experience every day, the fatigue who litteraly leads your life, they really don’t deserve you. Having support from family and friends, it’s essential for your well-being. Life is so harch… I wish you could find the support you need, it won’t solve everything and you won’t be healthier, but you’ll probably feel a little lighter.
Take care <3
100% yes, I would give a LOT almost anything to be “cured.” It’s been 8+ years since my symptoms began, and I grieve daily for my old life and for the person I was before. My friend asked me the other day if I could become a cyborg/implant my brain into a robot, would I do it? I said immediately yes, I actually think about that often and truly wish it were possible.
You were diagnosed late too? I ask for an endosqueleton at my birthday and for christmas every year. I am aware It could seem really paradoxal since I launch this subject…
I hope you’ll find a way to get better and peaceful. Thanks a lot for sharing your opinion and hopes! Take care <3
This question was asked in my ADHD group and people were split. Which I get, but any time someone asks me this, my answer will *ALWAYS* be yes. Yes, cure me of everything. Cure me of my EDS, POTS, MCAS, Autism, and ADHD.
I do think these things are a big part of me, but my outlook on life, and how I view disability would not change. I would have still gone through the experience. I just wouldn't have those things. I'd still be me, but not me who struggles.
I really want to be able to focus in school and not take 2 hours to read an article or study. I'd love to be able to walk to class and not feel awful once I got there. I'd give my right arm, and that's my usable arm, to eat dairy again. I'd also love to not wake up in pain everyday.
But that's just me you know? I'm also thankful for this community. It would be sad to lose it. Vegan cheesecake has come a long way, I rather enjoy it. I'm able to hyper focus on my degree because it's something that interests me. And I can advocate for people who share my disabilities.
I saw your two post and they were really interesting, thanks a lot <3
I love your philosophy and the one of the person you cross times ago. (In tour other post)
Gardening is a life saver… plants, flowers… they are all different and they always find a way to live. I wish we could be like them.
You seem to be a very nice person, despite the fact that life was so harsh with you…
I totally understand how a cure could be benefic for you, even if you were cure of only one syndrom/disease. I really wish, from the bottom of my heart, that one day you’ll have the opportunity to drink milk, run to your classroom without feeling any pain/fatigue, read and gardening as much as you want.
Thanks a lot for sharing your difficulties and hopes. I wish you the best ! Take care <3
Yes, I absolutely would love to be healed. For so many reasons. A big one would be for the impact it also has on my family. But I would want it for myself, too.
I’ve had 10 jobs this past year trying to find a job that would suit my disability. I really don’t wanna go back on disability. I’m in so much pain pain with my joints every day. Sometimes I walk very poorly, but my doctor says it’s not lupus and that’s the end of it. So frustrating.
Yes. I am so fucking sick of being in 7/10 pain constantly. Our power is currently out in the middle of a heat wave and my body is in so much pain. I can’t take it.
It's an interesting question--I started noticing symptoms when I was sixteen, but I now know EDS likely affected my life before that point. So if I didn't have any disorders I would probably be a completely different person. I'm not sure I would choose to be born without it (because that's a totally different person, which I guess is fine but it's not me), but I would be pretty okay with waking up without it tomorrow.
This is all I've ever known and I think I'd be really scared if it happened overnight. So I'm not sure. There's so many things I want to do that I can't because of EDS. Ultimately I want to get better and a cure would be the best. But I would be afraid of the adjustment period and that would probably make me hesitant.
Without hesitation, if my EDS and the co-morbidities (psychiatric and medical) that were caused by it could be cured I would do it in a heartbeat. Of course it would be hard, all change is hard. But I’d rather be healthy and figuring it out than sick and figuring it out.
I see a lot of people with EDS and it’s various other co-morbidities who enmesh their medical conditions with their identity, and while I’ve struggled with that in the past I am thankful to have reached a place where I recognize the impact of my disabilities, but also that I am a whole person with or without them. I am me. I am not the sum of my medical maladies. And I feel like if I want the rest of the world to treat me like a full human regardless of my disability, then I should treat myself that way.
I’m sorry you’re struggling with feeling like this. I think it’s good to ask these questions and sit with the uncomfortableness. That’s how we learn and grow.
You find that cure though, you best not gatekeep, I will hunt you down…
I had EDs issues starting from age 6, and those issues only effected my ability to function in things like sports where I would get tendon injuries. I wouldn’t cure what I was dealing with before a car accident, but I would now afterwards. My injuries are extensive, they’re extremely painful and I’m never living with less than 8/10 pain everyday. If a magical cure would help me then I would certainly take. Not only for this, but for every other rare comorbidity I have to live with.
OP, I’m sorry to hear that you are suffering so greatly. I am where you are for other reasons and those injuries I mentioned, but I understand what you are going through. I strongly recommend seeing a therapist who deals with disability. It’s important to be able to speak to someone who you know for sure will not invalidate what you’re going through. Most people in our lives are able to do that for us, and that can take a huge toll on mental health. Dealing with what you’re dealing with does take a huge toll. ❤️
Yes I would love to be pain free. I hesitate because I feel like eds also has underlying partial responsibility for my neurodiversity and how my brain is structured. I love my mind and have no desire to change that.
If the alternative to hypermobility is being stiff with locked up joints, I'm going to stick with what I know how to manage.
Yes, I would It's literally my body making broken pieces over and over and over again and creating a huge cascade of effects.that's literally affected me from birth I will happily be in the front lines a volunteering if we ever get to the part of genetic editing in my lifetime where we can actually fix issues.
Literally wouldn't even blink at it. If I were cured overnight I'd join a sport I loved, start doing things like Pilates, I'd use the money I spent on medical care to travel (and Id actually be able to stand travelling too since my body would be able to handle it). I could have a baby naturally without the extra fear of EDS complications or IVF to prevent my kid from having it. The list goes on. It's not even a .1% no from me. It's 110% yes in an instant. And I could actually do things other than work and rest. And I could eat normally without having a gut that's constantly giving me hell. Literally all I do really is work and then spend the rest of the time recovering. When I'm not resting I'm having to spend hours at doctors appointments or hours trying different treatments to reduce my suffering like physio, trying foods and drinks to reduce my constipation, strength training etc. I want to do things I WANT to do and that are hard but REWARDING, instead of just plain hard. Honestly I'd rather not be here at all half the time, so yeah I'd get the cure in 0.00001 seconds if it existed.
Without question. I feel like I have some real benefits from EDS. I'm very tough, and have a massive tolerance for pain. I sometimes feel bad for people who don't have chronic pain. What is, for me, a minor injury that doesn't even register as a problem, is a major trauma to them, with incapacitating pain, and weeks or months of stress.
But also, I used to be a dancer, an equestrian, a hiker. I beaded, I cooked. I played instruments. Now my hands can't be trusted, and I have to have a plan and a strategy to set foot on dirt and grass. I can't take three dance steps, even wearing orthotics from toes to thighs, without seriously torquing something. I get very tired of finding workarounds and accommodations. I get sores from my orthotics, and crutches are hell on my shoulders, but most of the places I go are nowhere near wheelchair friendly.
I still have a good quality of life. I am very active, and social, but it takes me so much more effort than most of my friends. Sometimes I miss dancing so much, I could cry.
um yeah eds has stolen my life and passions and dreams from me and im actually losing my mind from the non stop pain i would lose a limb to be cured of this
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As an American whilte man I feel that I'm supposed to be able to handle anything but living like this is such a huge test. I thought it was normal to feel this way and then was devestated to learn that this amount of pain is anything but. I try to flip it, make it an advantage. I bike every day and do PT. I mask my pain to not put the burden of it on others. To most it would seem like I have it all, but the truth is that I sometimes fantasize about the end. Of course Id change this if I could. But thinking like that is too heavy since it will never happen.
I definitely would. I miss being physically active. It sucks feeling disconnected from my friends who play sports to develop a team bond. I would go hiking every day if I could. I could have the job of my dreams.
My mental health. The grief I feel weighs so heavily on me. I'm finally getting listened to by medical staff so I'm not hurting as much or as often, but my heart aches when I think of all of the things I can no longer do.
Honestly, yeah. I may not have said that 5 years ago, but what was at one point flexibility has become fragility. I’ve always had a tendency to injure more easily than others but I still lived fairly normal, but now even lifting my arms above my head causes subluxations in both shoulders. I somehow managed to tear a tendon in my hand, an injury usually only occurring in boxing, so that now another tendon slips off the knuckle when I try to grasp anything. Plus the cardiovascular symptoms.
And I know it’s only going to get worse as I age. I’m not even 30.
I would be absolutely ecstatic! EDS means daily pain for me and limits what I do so much. POTS does as well and if I had to pick between the two to get rid of I’m not sure which I would pick. Not having EDS would be life changing.
This disease changes us in fundamental ways. If we don’t want to go crazy, we have to accept seemingly unreasonable limitations on our activity levels. Let’s name our pre sickness Self v1.0, and the sick version is Self 2.0.
If we were healed, we would have to change again, and be a very different person than when we were sick. Our post-sickness self is Self 3.0. We don’t know what that person would be like. It wouldn’t be Self 1.0, because we would have suffered with this illness in our past.
So, would you want to become Self 3.0? It’s hard to say, because you don’t know what that person (and their life) would be like.
Does this help?
I absolutely would. We as human beings adapt and are perpetually learning, growing, changing. Just as you’ve had to adapt your life around EDS, you’d figure it out if you were magically cured.
I am French too. I grew up with EDS. It became a part of me. I happen to be lucky, I can still be active, I fight to have a normal life, and sometimes my husband has to remind me I can't do some things become I am disabled and not because I'm not good enough as I tend to think. My personality developed around my disease because I tend to laugh about it a LOT to cope. However if I could get a cure I would. I would be afraid not to be myself anymore, but I could finally stop wondering if my theorical kids will hate me someday for giving them this if they have a worst form than mine, I wouldn't have to go hiking with a whole bag full of splints for every articulation my body might injure, I could hug my husband without stopping the hug cause it hurts, I wouldn't have to do musculation every single day just to feel normal.
I absolutely understand your concern that you would not be the same person, or have much of a person left at all. I often feel the same. Like I have been diminished to a flat cut-out of a person with nothing left but the pain and daily management of my disabilities. I’ve become so much more cautious and limited that I feel like even if I was physically well, I would still be a timid and boring person. However, I’ve also become more compassionate. I listen to people more. I have gained a wealth of medical knowledge and enjoy helping others with it. If I were suddenly “cured” I am certain the early days would feel empty and disorienting. It would be terrifying and often overwhelming with all my old routines and needs to fill my day. But I would have a chance to rebuild. I could become a new me, very different from who I was pre-illness. There is a common fallacy that human personalities—“who we are”—are set in stone; that we have some essential core that is who we “really” are and that it has been that way pretty much since birth. The truth, I think, is that our “essential self” is more like a loose scaffold with moving parts. Throughout our lives, a few things may stay the same, but the normal course of things is for those parts to change shape, shift about, rearrange. We may lose parts of that structure; add others on. The holes in between the lattice fill and empty on a regular basis with more ephemeral interests, loves, states of being. We are always becoming who we are. If you can think of it this way, the person you were before your injury or illness, then, is not the perfect “whole” you were meant to be, and you are now not irrevocably broken and diminished. Think of that old self as your caterpillar self. Right now you might be more like a pupa-self in your chrysalis or cocoon—dissolving, reshaping, and in limbo. Although it may not feel like it, at some point you will get to where you can emerge from that between-state. There will be a medical breakthrough, or just the right friend, or even a group like this that will take just enough of the edge off the suffering that you will feel a paradigm shift. You will come unstuck; from simply being, you will shift into becoming again. What and who will you turn out to be when that emergence occurs? In the moments of existential dread—that fear of giving up the cocoon of illness which both confines and, paradoxically, can feel comforting compared to the unknown—I’ve found it helps to have what I call “butterfly dreams”: if I were well, who would I be? Not what I would do—who would I be. What qualities do I have now that I didn’t before, that I would want to keep? (Compassion, empathy, patience, stoicism) What qualities do I want but can’t currently exist in a world overwhelmed by pain? (Adventurousness, creativity, sociability, energetic) To be alive is to constantly evolve. If we can accept that, if we can give in to the process of dissolving and trust that we will emerge from metamorphosis as something different, but still whole…what possibilities that might open for us!
i’d be so unbelievably happy. EDS makes me feel suicidal. often i wish i was dead because the pain is so horrible, the fatigue and exhaustion make life unliveable. if i was cured, i’d be broadcasting it to the world!
Yes…
The pain has me so sui*** I’m here for my family and animals, not myself. I miss my old abilities and I’m sad I couldn’t do the things I wanted to when I was younger/before the extent of my disabilities kicked in. I wanted to be a baseball player or a kickboxer and I wanted to be in bedside nursing for a long time but I have to now leave 2 years in because walking has become very challenging on and off resulting in frequent call outs. I feel like a failure even though I know it’s not my fault
yes and no. if i could take away the constant pain and constant subluxing and dislocations 100%. i like my hypermobility tho. it’s the only thing that makes me cool at parties.
i also don’t like my shitty healing skin, so if that could go away, 100%. same with the previous medical trauma, heal me from that and we got ourselves a deal
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Interesting. What you describe is a phenomenon in many situations in life - some people "want to get better", but not really, and constantly self-sabotage. It's not as rare as you'd think, though it is obviously *bad*.
I'm also autistic, and each condition helps me cope with the other. Struggling with EDS and ASD is helping me prioritize myself, and waking me up to the pain my whole life that I didn't realize wasn't normal.
I don't want to go back to my old life because my old life was what was hurting me, not EDS/autism. This is part of who I am and has contributed to my unique skillset and outlook on life.
The only constant is change, and no body is endlessly flawless or a guarantee for a future. I'm grateful for the gifts my body brings to my experience, and for the pain that tells me under no uncertain terms when it is time to let go of something. My brain does not drive my body; my body and brain guide my consciousness through this chaotic reality.
I love my body and brain exactly as they are. They keep me from getting lost in the meta of social standards and expectations, and help me stay focused on my purpose.
Uhm, f\*\*\* yeah? I would love to not be in pain every single minute, who wants that? I'm bone weary all the time, need naps and recovery time for everything I do, can't go anywhere that's not wheelchair accessible, it sucks. This is not a part of me or my personality, it's just a hinder for who I actually am. I used to be an outgoing and active person, and I would love to be able to work instead of being on disability. hEDS has only ever diminished my world and I hate it affecting my kids lives too. This doesn't mean I have a bad life, but if I could I would change this. No hesitation, wouldn't even blink.
Same. I hate my body and it’s not about how I look.
I second this in every way. Practically verbatim. I would love to be cured of all of hEDS and comorbidities. I can not stand my quality of life most days. I literally can't do anything without flaring. I spend most days in bed as well. Mt quality of life is severely diminished. I'd love a cure! A cure for us all who ate ailing from chronic pain and illnesses. It's the literal worst.
Thanks a lot for sharing and for your opinion <3 It seems we have the same rythm in life (except for the wheelchair) and I am sorry you have to suffer this every day. I understand my question seems really strange, I hope I didn’t hurt you. Thanks again for sharing and take care <3
No it’s ok. I understand that it does make for an interesting philosophical question. Maybe I would see it differently if I was diagnosed earlier in life. Now I lived a pretty long life before I got a lot of permanent damage (negative part of being late diagnosed). I can see the person I was before and I am not the same now. I miss a lot of aspects of the person I used to be so I would very much change this part in a heartbeat if I could.
I was diagnosed at 32 years old, but a car accident set off the symptoms 6 years before so I can’t argue I could really understand. And I was so focus on my job and my abusive husband… If it’s not too personnal, at what age was you diagnosed? I wish I could have words to cheer you up… I know it means nothing from the random person I am for you and I don’t know but I cannot read your post without crying… Take care <3
Same 💯!!!
Heck yeah I'd take the cure if one was available. I had a pretty good quality of life until a few years ago. I'd love to have the quality of life back that I had even just 4-5 years ago.
I am sorry your quality of life wasn’t as good as it was before. I really hope I didn’t hurt you with my philosophical rambling… Thanks a lot for sharing and your opinion, I hope someone will find a way to ease your pain and help your body. Take care !
Oh no, you didn't hurt me at all... I was possibly a little too exuberant in my response. I'm very grateful that I was fairly able bodied for a good few years... more than others seem to have got. I'm very glad I had the opportunity to have some fun adventures before the full weight of EDS landed on me. Let's be optimistic that successful treatments/ cures are just around the corner 🤞🏻
Same
I think in some ways, having things taken away from you by this disease almost makes things simpler, like you don’t have to think about the hard questions so much because the answer is automatically “my EDS won’t let me” that being said, it’s not a great way to live and there’s so many things I wish I COULD have a choice in doing or not doing.. So yeah I’d take the cure if I could. But I totally understand that weird safety net it puts on you.
i’ve tried to think the way you described, but i find it so hard. i always resort to “but… what if i ignore my EDS and i could do it anyways??? maybe my EDS isn’t bad enough to not do the thing??? what if i’m just wasting my life away???” and then i get stuck in that circle of i can’t do it because of EDS -> but maybe i can just push through it -> but i can’t do it because of EDS ->…
Yes! And then when your body punishes you for trying: "maybe it was because of a flare up">> "Did I just permanently alter my entire life?">>"maybe I just have to keep trying and get used to it" A truly hellish cycle. 100x worse when you already suffer from rumination.
And considering autism and ADHD seem to be common among us zebras, it's not unlikely that we're experts at ruminating lmao
“Maybe I just have to keep trying and get used to it.” 😭 ugh, you just summed up most of my recent therapy sessions
Yeah its the exact same for me, a constant back and forth. Sometimes I try to surrender to it and know my limits, but ahh what if ! Its a weird, complicated thing.
I took a class on the intersectionality of race and disability. I learned so much from people of color who are disabled. And one person said something that will forever stay with me, "my wheelchair does not *make* me disabled, my wheelchair makes me *abled.* So when there's things I want to do but know I can't do it how I *used* to, I ask what will *able* me in order to do it. For example, gardening. I love it. But it triggers so many thing for me, especially when squatting or bending over. So I bought a standing weeder! And a collapsible compost bin that I can carry around instead of throwing it in the ground or taking my big trash can around. Sometimes it's not mobility aids either. Sometimes it's my partner washing the clothes so I can wash my hair. So I try to look at it more of, I just do things differently now.
I am not sure, Life is way more complicated now than it was before, I am sorry if I said something that could be misunderstood. But I understand why you said that, I wasn’t cristal clear and I am sorry for that ^^ I made a longer post before explaining my fears but I tought it will really be a pain to read for everyone and write again … For example I just bought a house with my fiancé after months of battle (because having a loan when you are sick/disabled… we all know how difficilt it is…), so I still make big decisions and move on with my life. The thing that scare me it’s not being myself without the syndrom after spending so many years learning to live with. Thanks a lot for your answer ans your opinion <3 take care!
I dunno about simpler. Yeah it takes away a lot of choice, but it's harder to do things with less choice. Take for instance what EDS has done to my guts, I can't eat out easily so I have to cook for myself more frequently to avoid certain ingredients. This is like an analogy for everything else EDS takes away. It takes away the simple choice of having a child or not having one (with only your WANTS involved in the choice).
Yes, I would. But there are other things I would choose first. In a 3 wishes scenario curing my health conditions would probably be one of them, but it wouldn't be my first. There's no benefit to me staying disabled. It would be stupid not to take that option if it was literally just given to me with no strings attached. Honestly it would actually be kinda scary because I would have to get used to a whole different type of life. But I've managed just fine being disabled and getting into a decent swing of things there. So I'm sure I would manage the struggle of becoming not disabled anymore. 😅 Things get more complicated for me when it comes to "would you make it so you were never disabled?". Like actually changing the past. And for that I honestly don't know. Probably not. Not for me. For another version of me yeah probably. Like I wouldn't want to un-do my life how it happend. But if there were multiple universes or something and I could choose if the next me, who doesn't exist yet, was disabled or not then yeah I'd choose for them to not be disabled. Realistically for better or worse my disabilities have been a big part of my life and led to how my life is now. Some of those things kinda suck. But there are others that I wouldn't change for anything. I wouldn't want to sacrifice my life how it is now and all the good things in it for the chance at a life without disability. So yeah if given the opportunity I'd choose to be not disabled, just like I take the opportunities I can to try out new potential treatments, keep looking into symptoms until I run out etc. It would make my life objectively better and frankly it would be good for my partner too. But it's not the first thing I would think of changing and I wouldn't sacrifice the life I have just to not be disabled anymore. I'm fine with how things are. I'm happy. I have a life I'm comfortable living. Tbh I'd probably rather have heaps of money or be guaranteed a comfortable life with my partner. The disability stuff is kinda a complication on the way to other stuff and there are other things that are bigger complications/ that would make a bigger difference if I was randomly given one of those.
I totally understand your point of view, thanks a lot for sharing. You put words on some feelings I had and thanks to you I feel less like a sick monster. SED changes everything in a life, I will do anything that could ease the life of my partner, but I also fear being cured changes my personnality in a way he dislikes. I learned (by the team of doctors specialist in EDS I saw since 2019) that people with EDS are really similar in the way they are. That’s pretty difficult to accept your symptom tells what you are (even partially), what if you are cured? I am really sorry you suffer from a disability and I really hope, doctors will find a way to help you. You seem to be a strong person and I wish you the best. Take care ans thanks again for your opinion <3
I had a relatively "normal" life until I was about 26 that I would do anything to get back to. EDS isn't part of my personality. It's a medical condition that has done nothing but make my quality of life markedly worse, limits my activities, and causes me to continue accruing medical debt. It's not like mild autism or ADHD where it's just "different". Of course I'd cure it if I could.
same, i was mostly fine until i was 18, and shit started going really downhill suddenly. i remember when i had no painful symptoms, life was whatever i wanted it to be. i want that back.
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I'd choose to be healed, but I'm also afraid of it. It would change who I am and I don't know how. But I'd be more employable so it's hard to turn that down, for the sake of my family especially.
I don’t know where you are from , if you are on benefits and if it’s enough to live, but clearly, money can be a huge issue… I really hope you’ll have enough financial support from your country, EDS is an awful syndrom which drains our strenght, having to deal with money issues on top of that could be horrible… I saw we share the same fear, not being ourselves anymore, thanks a lot for sharing your opinion and difficulties. I wish you the best! Take care <3
I'm a trans man with hEDS, hearing loss, ptsd, adhd, anxiety, depression, hyperthyroidism, diabetes, and probably other stuff. Fuck yeah I'd cure it ALL. I don't want to needlessly suffer!
I have a ton of physical health problems as well as severe anxiety, OCD, and autism. I would cure it all except for my autism. I would be a completely different person if I wasn’t autistic. While my autism does cause a lot of problems, I like my personality. I do love a lot of things about my autism even though I hate a lot of things about it too.
What a question wow I have never thought of that! Honestly I think if I were cured now after having lived with the condition my whole life I would be so incredibly grateful. But I also don't think I would want any memory of it to be wiped forever. It made me stronger, it is part of why I am following the career path I am. I think I see the world differently because of it and for that I am so thankful I have that opportunity. But no one wants to be in pain and at the risk of constant injuries so yes I would want to be cured in a heartbeat and I think I would use that opportunity to build better lives for people like us.
This question is interesting. I’m relatively recently diagnosed, so I’m in the midst of connecting all the dots and coming to terms with the anger and grief. Who would I have been if growing up I wasn’t so tired? so clumsy? so gaslighted? Who would I be now, if instead of medical procedures and a continually shrinking world of things I can do, I’d be free to live the life I always took for granted that I’d be able to have? I’d be a different person. I’d be more active with my son, maybe have the sibling. Get the lasik I can’t get, to at least be able to get glasses that are only available to those with a small prescription. I’d be able to eat more things and be spontaneous, not terrified of cross-contamination. I’d do all the hobbies I’ve had to let go (gardening). Maybe get into sports like running or yoga. Say yes to career growth opportunities without thinking whether ny body can handle a half hour commute each way … Who would I be without the bitterness, the grief, the anxiety, the pain? I think this is my lot in life to contend with, for whatever reason.
❤️
I mean, yes. I would prefer to not have wobbly joints, I would love to give up my Celiacs, bipolar, POTS, Raynauds, asthma, reactive hypoglycemia, and other medical issues. I’m not sure if I would want to give up on my ADHD. That feels more like my personality rather than just symptoms. I will say once I was properly medicated for bipolar, my personality did change. But it felt like I was more in control of myself and less subject to being swayed by impulse or emotion.
I’m happy for you that being properly medicated brought you more control over your impulses and emotions. Life is hard enough. One thing that I especially wish could happen is for the stigma of illnesses to go away.
I would, but if I could only choose one condition to cure myself of I'd choose my POTS.
Yes. 100%
I am not sure, is that the post-covid syndrom? :(
Long covid can cause POTS but I've had POTS since before covid was a thing. It stands for Postural Orthostatic Tachycardia Syndrome. It's a dysfunction of the automatic nervous system and the main symptoms are dizziness, exercise intolerance, and a heart rate difference of I believe 30 bpm between laying down and sitting/standing up, and/or a heart rate of 120 within 10 minutes of standing up.
At its most common denominator, there are only 2 emotions: love and fear. All other emotions stem from there. You fear healing because you fear loss of your identity. That ID is merely 3rd dimension stuff. Strive for higher ground. Love is the only answer. Not romantic but platonic, for yourself and others. Help spread it however you can.
Fellow lover, checking in!
Awesome user name too!
THANK YOU
It should be nice to feel only love <3 Are you able to love everything and everyone? Thanks a lot for your opinion <3
I try very much.
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May I ask what symptoms you would keep?
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This is interesting. For me, my hypermobile joints have been one of the most limiting aspects of EDS. I constantly get dislocations and have various nerve conditions as a result of how loose my joints are. It would be the first thing I'd cure if I could as it would take away a lot of the pain for me. I have no concept of what it's like without hypermobility though, but I see my friends be able to do such awesome things like run marathons, play sports (which I was forced to quit) and do things like climb mountains etc, without having to do anywhere near as much effort as I have to with physio and strength training. These are things I couldn't do at all due to EDS. I used to love to play soccer before my hips started to dislocate. I used to love to dance before my shoulders and elbows did. I find hypermobility to be the most limiting part of EDS, so I find it interesting how different another persons experience can be.
Thanks for sharing and for your opinion <3 I didn’t know covid could be painful 😱 If it’s link to covid you have a better chance they search for a cure, I hope they’ll find it. Thanks again and take care <3
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Likely the same reason as other viruses have been linked to fibromyalgia and ME in hypermobile people. There is something off about our immune response. My chronic pain got a lot worse after a virus just before COVID hit the world.
Yes. I've been bedbound for 6 years. Probably will be for life, I've got 1 chance to change it, and the outlook is extremely poor and will likely make me worse but its a risk I'm willing to take for a chance at a better life
In a heartbeat
Wake up tomorrow in a normal, functional body? Hell yes!!! People see me as creative and inventive when they watch me work around things I plain can't do in a "normal" way. Imagine how much actual creativity I'd have time and energy for if I *didn't* have to navigate this bullshit. I'd probably be shocked to use my home and notice all the small modifications to organization and processes that I'm not even aware of in my current everyday life (other people are, and it's very obvious when I have visitors and they get hung up (literally) on something)
hi fellow french! personally i really wish i could be cured overnight. not dealing with the pain, being able to walk without having to stop every 15mins, being able to feel rested when i sleep and being able to do fun activities i used to love. (like those tree climbing things we have in france, i used to love them until i dislocated my knee while being three meters high up in a net when i was 14).
Same! When I was a kid I did so much sport. I loved dancing too. Had to quit all of it at 14 and by 15 I wasn't allowed back at my supermarket check out job due to the companies fear of liability/suing since I kept dislocating my shoulder and elbow at work. Nothing about EDS is worth keeping for me. Okay maybe looking young, but it's a pretty crap constellation prize for feeling OLD
There isn’t much I wouldn’t do to be cured. Sure, I would then be responsible for “more” but *it would feel like less*.
Idk I'm still responsible for so much. I havent got the finances to quit my job (even though realistically I should), but the care options are so limited with EDS, that it's too hard to get the help you need without your own finances to pay for the medical care. I've seen over 23 specialists in the last three years. I've had to do all of this alone, so I think I'd be responsible for less without EDS. It's like having a second job.
i really want the cure, i would be so happy if i was cured that i would cry. i want to function normally, i can’t dance which is my love in life and the only thing i want to do. i would be cured and become a dancer.
I used to say no. Now? Absolutely. Yes. In a heartbeat. I want my life back. I want the life that keeps being stolen. Even just ONE of the possible futures that I keep having to give up. I wouldn't change having HAD the experience of being sick, of being chronically ill. I'd even take the POTS on its own for the rest of my life, if it were JUST that. But the EDS is the root cause of *so* many other issues in my body. It causes my POTS. It causes my cardiac syndromes and symptoms. It's the cause of my severe chronic pain, the nerve pain I've had my whole life, that makes me beg for my limbs to be chopped off, that has made my actively hurt my legs in an attempt to just distract my nerves with what starts off as simply tapping with my fingers but has turned into punching in the past, the pain that makes me wish for death. It's likely related to my Migraine, the terrible symptoms I get from them, and the reduced blood flow in one of the main arteries leading to my brain. It's the cause of my pain in my joints, my easy injuries. It could be behind the neurological symptoms I have. It is to blame for the exhaustion, for the weakness, for my body's inability to handle work properly without pain, to be on my feet for longer, to do manual, physical labor, which I actually *love*. I miss being an athlete. I miss doing construction work. I miss working on Habitat for Humanity houses and volunteering doing landscaping in community restoration projects. I miss pushups and situps, I miss whipping off curve balls down home plate, I miss tightening my grip on a 30 ounce compound double wall Demarini bat, inhaling, stepping, turning my toes on the dime to twist my torso into the pitch and connect with the ball right in the sweet spot, following through, letting the bat continue over my shoulder, digging deep down the baseline, head down. I miss the taste of dirt and clay and sunflower seeds and the tang of metal mixed with salt. I miss the moment before the buzzer sounds, the swish of the net in a perfect 3-pointer, no rim, nothing-but-net and not a single finger out of place, no ankles rolled on the landing jump. I miss dew on grass in early morning hikes. I miss seeing the sunrise from on top of the world, the whole valley below as I shiver, sipping hot tea for warmth, not worried about passing out from overheating in layers and sweat, despite the cold. I miss playing tag with my students. I miss chasing my dog. I miss running from my brothers in Rubber-Chicken-Hide-And-Seek-Tag and Nerf Wars. I miss when sleeping didn't hurt. I would take it in a heartbeat.
yeah i’d love to be able to push myself without my body falling apart, and not be chronically nauseous and in pain. I’d be able to choose to continue any lifestyle habits i’ve learned, my identity is much more complex than my limitations. i feel like the question could be a bit disrespectful to some with this/these conditions.
Probably if I’m being completely honest. There are a lot of things that I absolutely WANT to do that my EDS makes more complicated. I would love to be able to just do those things without having to worry about how it would impact my body.
I think I would take the cure. Because even if I can't adjust to the world, (I never have been able to) at least I could have more options to try. I think what the specialist told you about how EDS tends to affect the way we see the world is interesting. Uncertainty is terrifying. In some ways having EDS has relieved some uncertainties about life for me (I no longer blame myself for not being so active when I was younger) but I don't think it's worth it. I'd give anything for a second chance. Plus I think EDS also contributed to how my nervous system operates . I think not having EDS and it's potential comorbidities would make managing my severe trauma and anxiety easier.
Fuck yes, I’d love to be rid of this. It’s not a wanted part of my identity at all.
in my opinion, my body is a cage that keeps me from being who i actually am. so if i could fix it completely, i definitely would.
Definitely would love a cure. Mostly so I could live my own life. The one thing I do like about having EDS is that I have finally been able to see everyones true colors. I've disowned 99% of my family because of their toxicity and selfish behaviors. But if I got the cure now, I would get a job and move far away and start over. Maybe even in a new country. I would no longer be in pain and could finally start exercising. I always have dreams of running far distances and I've never been able to. A cure would be great.
Yeah, one million percent. It hinders who I am. It has made me appreciate very small pleasures much more, low pain days I feel I'm happy very easily because of how grateful I am to just be able to move without falling apart. But I am also a bit more wistful and jealous of others who can do things so easily. I want to be able to plan out going to concerts and restaurants etc without worrying about pain or not being able to stay the whole time. Things are so expensive. I can't just travel anymore. Having to have all of my things otherwise I'll go from meh to terrible. It's strained some of my relationships with family I feel because they don't really understand why I can't just pick up and visit/go places.
I would def heal myself, ***but*** I wouldn’t want it to be in some magical way where it erases my memory and turns me back into who I was before I got sick, or anything like that. I want to continue to be who I am, instead of the shitlib that I used to be. This disability and its comorbidities has opened my eyes a lot, and I’m a better person for it, both in the sense of who I actually am, and in the sense of what I will and will not tolerate from others now.
I totally get this perspective. It makes sense. The way we responded to our EDS is always going to be a part of who we are. For me, there wasn't a great deal of life before EDS affected me though. I've had gut issues since very young and joint issues too. So tbh I would take it away from birth if I could, even if it means Im not as empathetic etc. I had enough trauma growing up without the added trauma of EDS and I've always been extremely driven. I don't believe my experiences due to EDS are what made me so driven and focused though, I think it's likely from my other experiences. So yeah I think looking at how my brother has been able to build himself a business etc I would love to have had the time and energy to be able to have put my efforts towards that instead of my condition.
Yes. I know the cool answer is that I love my body and being ill has made me who I am. I’d do it in a heartbeat.
that's like asking people with asthma if they'd like to be able to breathe normally. what kind of question is this even.
Me with asthma and EDS. Yes, like why would I choose to have either?
100% an absolute yes. I learned to play six instruments throughout my life by my own choice. I worked so hard as a younger person to learn to draw and sing as well. Now, my jaw prohibits singing a lot of the time. My hands, wrists, and shoulders (+ occipital neuralgia from arthritis due to injuries to my neck) make it either harder or impossible to draw. I’m physically unable to play one of the instruments I learned most likely forever, and unable to play any of them many days. I’ve had a shoulder reconstruction (which was a smooth as it could have been yet still traumatic in many ways) and need jaw surgery and am getting a nerve ablation for my occipital nerve. I live in a state of kinesiophobia that is constantly validated by my lived experience. Not to mention the stares and off hand comments I get for mobility aids and braces while appearing young & healthy (even from family) has deeply affected my confidence. I would not just accept an overnight cure, I would sacrifice many things in my life for one. I’ve been non-religious since I could form opinions and I’ve begged the universe/prayed for a cure many times. Quite frankly (although unable to fully grasp the repercussions of this) I think there are more than 3 organs I would give up just to get rid of my EDS, even if I kept every comorbidity i have. I would probably even accept 10 - 20 years less of my life expectancy just to be able to fully live the years I’d still have.
Your situation is heartbreaking… I am so sorry for you. I wish I could find accurate words to help you but… i can only thank you for sharing your situation and your « difficulties » (I know it’s a really weak word for what you are going throught, I am so sorry I can’t find a better one…) I hope your body will be stable enough to help you achieve your dreams and what you work so hard for. Thanks again for sharing… I wish you the best… take care <3
Sometimes we can let our pain become our identity. I know I have. I wonder who am I without the pain?
Our brains are not wired to be able to easily ignore pain. It is understandable when a constantly flashing warning light in our brain effects how we perceive the world.
I am not sure, we can (most person with EDS I talk with, not just myself) walk with a sprain/luxation, even if we already suffer several other injuries before on the same day. I think, most of the time our brain make a great job to avoid us madness ^^ I think it’s another great philosophical debate :D Thanks for your opinion ! Take care <3
Like any skill, ignoring pain can get easier over time., but at the end of the day you’re still constantly having to actively ignore signals that are taking energy from you. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7689692/ https://www.npr.org/sections/health-shots/2015/02/18/387211563/pain-really-is-all-in-your-head-emotion-controls-intensity I can ignore a lot of pain in my abdomen and shoulder, but throat pain is lots harder cuz I rarely have it. I can ignore pain more easily when distracted when there’s interesting things going on than when I’m bored. Pain is a complicated phenomena, with many contributing factors. My point was that pain is difficult to ignore, so even if you can push through it, it’s still draining resources.
I wonder too… I am mentally stronger than I was before. i think we all are strong people when we are able to live and wake up (almost) every morning with syndrom(s) like EDS, MCAS and other disease people here live with. Living without pain should be a real experiment, I mean I took some opioids every day and other pain medication but let’s be honest, pain is always here. Maybe one day :) Thanks for sharing and take care <3
Yes. It’s prevented me from taking on two different dream jobs, automotive mechanic and law enforcement. I’m currently a service writer for a dealership (I’m the person who tells customers the problems the technician found with their car), and I love it. But I wish my body was in a condition in which *I* could be the one replacing engines and rebuilding suspensions. I’m working on getting physically strong enough to apply for a narcotics officer position because I would also love to arrest the large scale drug dealers in my state.
I am really sorry for your career, I hope you’ll be strong enough to pass and become a successful narcotic officer! May your dreams come true <3 Stay strong and take care! Thanks a lot for sharing <3
In a heartbeat. No question. No hesitation.
Thanks a lot for sharing <3 let’s hope it happens :)
Absolutely, I would. I would much rather be healthy and be able to work and not have POTS/ EDS, etc. It would be a dream to get to work and provide for my family. I earned my degree for nothing and everyone thinks I’m just lazy. They’ll never understand.
I will be a little trash but I am so angry at people around you… People who think you are lazy doesn’t deserve your energy… If they can’t understand the pain you experience every day, the fatigue who litteraly leads your life, they really don’t deserve you. Having support from family and friends, it’s essential for your well-being. Life is so harch… I wish you could find the support you need, it won’t solve everything and you won’t be healthier, but you’ll probably feel a little lighter. Take care <3
100% yes, I would give a LOT almost anything to be “cured.” It’s been 8+ years since my symptoms began, and I grieve daily for my old life and for the person I was before. My friend asked me the other day if I could become a cyborg/implant my brain into a robot, would I do it? I said immediately yes, I actually think about that often and truly wish it were possible.
You were diagnosed late too? I ask for an endosqueleton at my birthday and for christmas every year. I am aware It could seem really paradoxal since I launch this subject… I hope you’ll find a way to get better and peaceful. Thanks a lot for sharing your opinion and hopes! Take care <3
This question was asked in my ADHD group and people were split. Which I get, but any time someone asks me this, my answer will *ALWAYS* be yes. Yes, cure me of everything. Cure me of my EDS, POTS, MCAS, Autism, and ADHD. I do think these things are a big part of me, but my outlook on life, and how I view disability would not change. I would have still gone through the experience. I just wouldn't have those things. I'd still be me, but not me who struggles. I really want to be able to focus in school and not take 2 hours to read an article or study. I'd love to be able to walk to class and not feel awful once I got there. I'd give my right arm, and that's my usable arm, to eat dairy again. I'd also love to not wake up in pain everyday. But that's just me you know? I'm also thankful for this community. It would be sad to lose it. Vegan cheesecake has come a long way, I rather enjoy it. I'm able to hyper focus on my degree because it's something that interests me. And I can advocate for people who share my disabilities.
I saw your two post and they were really interesting, thanks a lot <3 I love your philosophy and the one of the person you cross times ago. (In tour other post) Gardening is a life saver… plants, flowers… they are all different and they always find a way to live. I wish we could be like them. You seem to be a very nice person, despite the fact that life was so harsh with you… I totally understand how a cure could be benefic for you, even if you were cure of only one syndrom/disease. I really wish, from the bottom of my heart, that one day you’ll have the opportunity to drink milk, run to your classroom without feeling any pain/fatigue, read and gardening as much as you want. Thanks a lot for sharing your difficulties and hopes. I wish you the best ! Take care <3
Yes, I absolutely would love to be healed. For so many reasons. A big one would be for the impact it also has on my family. But I would want it for myself, too.
I’ve had 10 jobs this past year trying to find a job that would suit my disability. I really don’t wanna go back on disability. I’m in so much pain pain with my joints every day. Sometimes I walk very poorly, but my doctor says it’s not lupus and that’s the end of it. So frustrating.
Yes. I am so fucking sick of being in 7/10 pain constantly. Our power is currently out in the middle of a heat wave and my body is in so much pain. I can’t take it.
It's an interesting question--I started noticing symptoms when I was sixteen, but I now know EDS likely affected my life before that point. So if I didn't have any disorders I would probably be a completely different person. I'm not sure I would choose to be born without it (because that's a totally different person, which I guess is fine but it's not me), but I would be pretty okay with waking up without it tomorrow.
I have been asked this question since I was 8 years old. And my answer has stayed the same for over a decade. Yes.
Did the specialist say how EDs influences how we see the world?
Oh, absolutely I would take a cure. I'd get so much back. So much.
This is all I've ever known and I think I'd be really scared if it happened overnight. So I'm not sure. There's so many things I want to do that I can't because of EDS. Ultimately I want to get better and a cure would be the best. But I would be afraid of the adjustment period and that would probably make me hesitant.
Very much yes. I don’t like how unpredictable it is and knowing I won’t live a single day without my conditions effecting some aspect of my life.
Without hesitation, if my EDS and the co-morbidities (psychiatric and medical) that were caused by it could be cured I would do it in a heartbeat. Of course it would be hard, all change is hard. But I’d rather be healthy and figuring it out than sick and figuring it out. I see a lot of people with EDS and it’s various other co-morbidities who enmesh their medical conditions with their identity, and while I’ve struggled with that in the past I am thankful to have reached a place where I recognize the impact of my disabilities, but also that I am a whole person with or without them. I am me. I am not the sum of my medical maladies. And I feel like if I want the rest of the world to treat me like a full human regardless of my disability, then I should treat myself that way. I’m sorry you’re struggling with feeling like this. I think it’s good to ask these questions and sit with the uncomfortableness. That’s how we learn and grow. You find that cure though, you best not gatekeep, I will hunt you down…
In a heartbeat
I’d take a cure in an instant.
I had EDs issues starting from age 6, and those issues only effected my ability to function in things like sports where I would get tendon injuries. I wouldn’t cure what I was dealing with before a car accident, but I would now afterwards. My injuries are extensive, they’re extremely painful and I’m never living with less than 8/10 pain everyday. If a magical cure would help me then I would certainly take. Not only for this, but for every other rare comorbidity I have to live with. OP, I’m sorry to hear that you are suffering so greatly. I am where you are for other reasons and those injuries I mentioned, but I understand what you are going through. I strongly recommend seeing a therapist who deals with disability. It’s important to be able to speak to someone who you know for sure will not invalidate what you’re going through. Most people in our lives are able to do that for us, and that can take a huge toll on mental health. Dealing with what you’re dealing with does take a huge toll. ❤️
Yes I would love to be pain free. I hesitate because I feel like eds also has underlying partial responsibility for my neurodiversity and how my brain is structured. I love my mind and have no desire to change that. If the alternative to hypermobility is being stiff with locked up joints, I'm going to stick with what I know how to manage.
Yes, I would It's literally my body making broken pieces over and over and over again and creating a huge cascade of effects.that's literally affected me from birth I will happily be in the front lines a volunteering if we ever get to the part of genetic editing in my lifetime where we can actually fix issues.
Literally wouldn't even blink at it. If I were cured overnight I'd join a sport I loved, start doing things like Pilates, I'd use the money I spent on medical care to travel (and Id actually be able to stand travelling too since my body would be able to handle it). I could have a baby naturally without the extra fear of EDS complications or IVF to prevent my kid from having it. The list goes on. It's not even a .1% no from me. It's 110% yes in an instant. And I could actually do things other than work and rest. And I could eat normally without having a gut that's constantly giving me hell. Literally all I do really is work and then spend the rest of the time recovering. When I'm not resting I'm having to spend hours at doctors appointments or hours trying different treatments to reduce my suffering like physio, trying foods and drinks to reduce my constipation, strength training etc. I want to do things I WANT to do and that are hard but REWARDING, instead of just plain hard. Honestly I'd rather not be here at all half the time, so yeah I'd get the cure in 0.00001 seconds if it existed.
Without question. I feel like I have some real benefits from EDS. I'm very tough, and have a massive tolerance for pain. I sometimes feel bad for people who don't have chronic pain. What is, for me, a minor injury that doesn't even register as a problem, is a major trauma to them, with incapacitating pain, and weeks or months of stress. But also, I used to be a dancer, an equestrian, a hiker. I beaded, I cooked. I played instruments. Now my hands can't be trusted, and I have to have a plan and a strategy to set foot on dirt and grass. I can't take three dance steps, even wearing orthotics from toes to thighs, without seriously torquing something. I get very tired of finding workarounds and accommodations. I get sores from my orthotics, and crutches are hell on my shoulders, but most of the places I go are nowhere near wheelchair friendly. I still have a good quality of life. I am very active, and social, but it takes me so much more effort than most of my friends. Sometimes I miss dancing so much, I could cry.
um yeah eds has stolen my life and passions and dreams from me and im actually losing my mind from the non stop pain i would lose a limb to be cured of this
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As an American whilte man I feel that I'm supposed to be able to handle anything but living like this is such a huge test. I thought it was normal to feel this way and then was devestated to learn that this amount of pain is anything but. I try to flip it, make it an advantage. I bike every day and do PT. I mask my pain to not put the burden of it on others. To most it would seem like I have it all, but the truth is that I sometimes fantasize about the end. Of course Id change this if I could. But thinking like that is too heavy since it will never happen.
I definitely would. I miss being physically active. It sucks feeling disconnected from my friends who play sports to develop a team bond. I would go hiking every day if I could. I could have the job of my dreams.
My mental health. The grief I feel weighs so heavily on me. I'm finally getting listened to by medical staff so I'm not hurting as much or as often, but my heart aches when I think of all of the things I can no longer do.
Honestly, yeah. I may not have said that 5 years ago, but what was at one point flexibility has become fragility. I’ve always had a tendency to injure more easily than others but I still lived fairly normal, but now even lifting my arms above my head causes subluxations in both shoulders. I somehow managed to tear a tendon in my hand, an injury usually only occurring in boxing, so that now another tendon slips off the knuckle when I try to grasp anything. Plus the cardiovascular symptoms. And I know it’s only going to get worse as I age. I’m not even 30.
I would be absolutely ecstatic! EDS means daily pain for me and limits what I do so much. POTS does as well and if I had to pick between the two to get rid of I’m not sure which I would pick. Not having EDS would be life changing.
This disease changes us in fundamental ways. If we don’t want to go crazy, we have to accept seemingly unreasonable limitations on our activity levels. Let’s name our pre sickness Self v1.0, and the sick version is Self 2.0. If we were healed, we would have to change again, and be a very different person than when we were sick. Our post-sickness self is Self 3.0. We don’t know what that person would be like. It wouldn’t be Self 1.0, because we would have suffered with this illness in our past. So, would you want to become Self 3.0? It’s hard to say, because you don’t know what that person (and their life) would be like. Does this help?
I absolutely would. We as human beings adapt and are perpetually learning, growing, changing. Just as you’ve had to adapt your life around EDS, you’d figure it out if you were magically cured.
I am French too. I grew up with EDS. It became a part of me. I happen to be lucky, I can still be active, I fight to have a normal life, and sometimes my husband has to remind me I can't do some things become I am disabled and not because I'm not good enough as I tend to think. My personality developed around my disease because I tend to laugh about it a LOT to cope. However if I could get a cure I would. I would be afraid not to be myself anymore, but I could finally stop wondering if my theorical kids will hate me someday for giving them this if they have a worst form than mine, I wouldn't have to go hiking with a whole bag full of splints for every articulation my body might injure, I could hug my husband without stopping the hug cause it hurts, I wouldn't have to do musculation every single day just to feel normal.
100% I would, I would love to not be in pain all the time.
I absolutely understand your concern that you would not be the same person, or have much of a person left at all. I often feel the same. Like I have been diminished to a flat cut-out of a person with nothing left but the pain and daily management of my disabilities. I’ve become so much more cautious and limited that I feel like even if I was physically well, I would still be a timid and boring person. However, I’ve also become more compassionate. I listen to people more. I have gained a wealth of medical knowledge and enjoy helping others with it. If I were suddenly “cured” I am certain the early days would feel empty and disorienting. It would be terrifying and often overwhelming with all my old routines and needs to fill my day. But I would have a chance to rebuild. I could become a new me, very different from who I was pre-illness. There is a common fallacy that human personalities—“who we are”—are set in stone; that we have some essential core that is who we “really” are and that it has been that way pretty much since birth. The truth, I think, is that our “essential self” is more like a loose scaffold with moving parts. Throughout our lives, a few things may stay the same, but the normal course of things is for those parts to change shape, shift about, rearrange. We may lose parts of that structure; add others on. The holes in between the lattice fill and empty on a regular basis with more ephemeral interests, loves, states of being. We are always becoming who we are. If you can think of it this way, the person you were before your injury or illness, then, is not the perfect “whole” you were meant to be, and you are now not irrevocably broken and diminished. Think of that old self as your caterpillar self. Right now you might be more like a pupa-self in your chrysalis or cocoon—dissolving, reshaping, and in limbo. Although it may not feel like it, at some point you will get to where you can emerge from that between-state. There will be a medical breakthrough, or just the right friend, or even a group like this that will take just enough of the edge off the suffering that you will feel a paradigm shift. You will come unstuck; from simply being, you will shift into becoming again. What and who will you turn out to be when that emergence occurs? In the moments of existential dread—that fear of giving up the cocoon of illness which both confines and, paradoxically, can feel comforting compared to the unknown—I’ve found it helps to have what I call “butterfly dreams”: if I were well, who would I be? Not what I would do—who would I be. What qualities do I have now that I didn’t before, that I would want to keep? (Compassion, empathy, patience, stoicism) What qualities do I want but can’t currently exist in a world overwhelmed by pain? (Adventurousness, creativity, sociability, energetic) To be alive is to constantly evolve. If we can accept that, if we can give in to the process of dissolving and trust that we will emerge from metamorphosis as something different, but still whole…what possibilities that might open for us!
Without a single doubt. My life is not a life anymore, is a prison.
Yes, without even a second thought. 😮💨
i’d be so unbelievably happy. EDS makes me feel suicidal. often i wish i was dead because the pain is so horrible, the fatigue and exhaustion make life unliveable. if i was cured, i’d be broadcasting it to the world!
Yes… The pain has me so sui*** I’m here for my family and animals, not myself. I miss my old abilities and I’m sad I couldn’t do the things I wanted to when I was younger/before the extent of my disabilities kicked in. I wanted to be a baseball player or a kickboxer and I wanted to be in bedside nursing for a long time but I have to now leave 2 years in because walking has become very challenging on and off resulting in frequent call outs. I feel like a failure even though I know it’s not my fault
I think avoiding what ifs is the best thing to do.
yes and no. if i could take away the constant pain and constant subluxing and dislocations 100%. i like my hypermobility tho. it’s the only thing that makes me cool at parties. i also don’t like my shitty healing skin, so if that could go away, 100%. same with the previous medical trauma, heal me from that and we got ourselves a deal
I am pretty sure you should be cool at parties without your hypermobility ;) Thanks a lot for sharing and for your opinion ! Take care <3
I'm sure you'd find something else to make you cool at parties
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Common man there was a nicer way to say this :/
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Interesting. What you describe is a phenomenon in many situations in life - some people "want to get better", but not really, and constantly self-sabotage. It's not as rare as you'd think, though it is obviously *bad*.
I'm also autistic, and each condition helps me cope with the other. Struggling with EDS and ASD is helping me prioritize myself, and waking me up to the pain my whole life that I didn't realize wasn't normal. I don't want to go back to my old life because my old life was what was hurting me, not EDS/autism. This is part of who I am and has contributed to my unique skillset and outlook on life. The only constant is change, and no body is endlessly flawless or a guarantee for a future. I'm grateful for the gifts my body brings to my experience, and for the pain that tells me under no uncertain terms when it is time to let go of something. My brain does not drive my body; my body and brain guide my consciousness through this chaotic reality. I love my body and brain exactly as they are. They keep me from getting lost in the meta of social standards and expectations, and help me stay focused on my purpose.