I don't have EDS, but I do have chronic illness and disability in the form of arthritis and fibromyalgia, and I find it super frustrating that abled folks will sometimes say "so CAN you do the thing" when the answer is "yes, but it will be the only thing I do all day and cause a lot of pain". No one expects abled people to do things that cause serious pain and will utterly exhaust them - in fact, that's why elevators and cars and such exist. And don't get me started on people's beliefs about all the money we "get". (And don't.)
Alexandra Pentland right?? Like at most is 100-600 a month at best.under minum wage for someome to live off and thise are for meds and transportation n specialist.fucken assholes
I think the most common misconception I face is that I'm going to get better. People who have seen me walk around with a cane for years will ask me when I'm going to stop using it. When people ask how I'm doing, they'll almost invariably follow it up with "But it's getting better, right?" And it's a hard thing to answer, because, like... I work really hard at physical therapy to get stronger, so I hate to say "no" (as that will generally result in "have you tried...?"), but if I say "yes", then it just reinforces the idea that this is temporary. Also, a really common reaction when I say that EDS is incurable, is "For now! Maybe they'll cure it!" Sigh. Able-bodied people really can't fathom the idea that anyone could be okay with having a disability, particularly a painful one. I don't need false hope, I just need to be believed.
I also have an incurable disability, and I've come to hate when people tell me a cure could come along any day, like that's supposed to give me hope. And I get it, I get that they are well-intentioned and I know they want to provide hope. But there's not a cure, and we don't know if/when there will be one, and in the meantime I'm dealing with this *now.* Like you said, I don't need false hope.
"I can't emote that pain all the time" SO relatable! I'll go to the ER or my PCP and they'll say "you don't look like you're in pain". Well, yeah, because if I did I wouldn't be able to get my needs met because people would get tired of being around me real quick.
Videos like this are hashtag relatable omg 😔❤ My dad and I have cEDS and while I have always worn glasses didn't realize that my eyesight would be impacted by the EDS until I went to the optometrist this year and he told me that the muscles in my eyes are degenerating like he sees in the elderly, and they are not focussing on the same part of my retina that they used to. It's just one more thing but siiiiiigh. TBH recently I've been getting so much better about doing things like asking for a seat on a bus, and actually pushing my dr to see why my resting heart rate is 120 (atrial tachycardia, apparently!) so that I get medication to alleviate the symptoms. Being your own advocate is harder, I think, when it looks like there is nothing wrong. I also have maintained work through occupational conditioning (and I have no doubt if I stopped working I would lose most of my mobility) but I didn't realise how much the pain itself affects me until going through therapy at the hospital pain clinic.
Holy crap, this entire video is me EXACTLY! I HEAR YOU & CAN RELATE SOOOOO WELL! I have hEDS (hypermobile EDS), Dysautonomia/POTS, Chiari Malformation (the bottom of my brain sags out of my skull into spinal canal), craniocervical instability (lax ligaments in my spine allow my top of my spine to push into my brain stem which cause my dysautonomia), hearing loss, insomnia followed by hypersomnia, among a bunch of other stuff. Almost all of my medical issues are not only chronic, but they're invisible & have no cure. It took me years to get a diagnosis & thousands of dollars traveling to specialists to get proper diagnoses & care. People often hear connective tissue & think marfans. If you aren't skinny with long limbs, they often mistakenly dismiss it as a possibility. My POTS was written off by several drs as anxiety, then prescribed xanax & antidepressant. It wasn't getting better & I noticed that my heart would race whenever I stood up. After doing some research, I heard about doing a "poor man tilt table test" where you record heart rate & BP while laying flat, sit up for 5mins take it again, & stand for 5 mins and take it again. I did this for about a month at different times of the day & then brought it to my primary care dr who realized I was on to something & sent me to cardiologist. EVERY SINGLE THING I HAVE BEEN DIAGNOSED WITH IN THE PAST 4 YEARS HAS BEEN DUE TO MY RESEARCHING MY SYMPTOMS. It was only then when I would request a referral to specialists that they would find I was right! About mobility: I have to use a walker & when I have to walk longer distances, I use a wheelchair. I have a handicap decal but I have been yelled at for not being "disabled enough". And YES about using the "invisible" mobility aids. I use my kids' heads a lot, especially around the house! I've never heard it called that, but I like that description! About the subluxations/dislocations: My most painful one is when my rib pops out. Some people think that this is not real & I am making it up. (But really, who would pick their rib of all locations as a place for having a dislocation?!) My husband has to shove on my chest in just the right way to put it back in place. He has to do so carefully so he doesn't accidentally break a rib or cause more problems in my spine. Sometimes when I'm actually walking with my walker, my ankle & knee will suddenly just give out. I will either fall into the walker (if I'm lucky & i can catch myself in time) or fall on the ground and hope I don't dislocate a wrist or shoulder. I haven't had my hips dislocate but I know my cousin has it happen often. My wrists & shoulder are the main subluxers. Well that and my jaw. If I open it too wide like when I yawn, it dislocates. Or when I'm eating & sometimes when I brush my teeth too. It is so loud & disturbing to look at (so i am told!) Even my physical therapist said he'd never seen anyone that it dislocates that bad! For me, the accessibility of public spaces is frustrating to me. Places like the movie theater frustrate me because you know you'll be limited to one of a handful of seats in the front, so essentially you have no real choice of seat selection which is why I never go. On the rare occasion I do go to the movies, like when Black Panther came out, our local movie theater had signage saying headsets & CC devices were available so I was relieved. (Since my brain surgeries, my hearing loss has been much worse, especially if people whisper & some background noises so I generally use CCs at home.) When I asked the guy at the ticket counter for CC device, he said they didn't even have them, that they only had the headsets. This is just one example of thousands that I know you can relate to about accessibility in public spaces.
Hi Annie! My university is starting an interdisciplinary disability scholars program and I am student peer mentor on the staff. I am a fellow disabled person and I have been watching your videos over the past year and a half as my symptoms have emerged and worsened. There was some extra money in the budget for the program and I suggested buying the participants "The Future is Accessible" merchandise, and my boss loved the idea. So if you get a huge order near the end of the month, it's from us at the UD Acesss: Ability Scholars program. I don't know the specifics yet, but a lot of the program is made up of disability allies rather than disabled people, so I'm excited to be a disabled voice to help them become better in their allyship.
I've been watching your vids for a while now, and I've had horrible chronic pain my whole life. You actually inspired me to finally get a cane, and get medical attention for it. I'm getting x-rays soon to see if it's due to my spine, possibly a crushed disk or pressure on my spinal cord.
I have a genetic condition that affects a lot of my organs. Mainly my heart. And I can't walk super long distances. I use a mobility scooter to get around some places and people have said on mor than one occasion "but you can walk!" Or "you didn't need that yesterday." Quite irritating
I've missed you, Annie!!! Funny enough in the last two weeks I've been telling people how much of my internalized ableism I've been able to identify because of what I have learned from you and the people I've connected with because of you. I am reaching out into more disabled spaces and finding support in ways I couldn't have fathomed 15yrs ago when I had my accident. I am feeling permission to be seen and heard in ways I never would have, and much of it started when I stumbled upon your channel last year. I am ridding myself of toxic hurtful thoughts and people, in part because of you. I am raising a child to know that I deserve to take up space in this world--that all bodies are valid--in part because of you. I am passing that education on and making anti-ableism allies, in part because of you. 💜💚💙💜💚💙💜 I think a decent proportion of your viewers are people with disabilities or have chronic pain themselves, and many of the rest are more informed and empathetic humans because of your education. So when you need to take time for yourself, when life simply isn't giving you any extra spoons at all, know that your body of work stands and that it is being pushed forward. While you are resting and recharging, we all are patiently and lovingly waiting for when you return.
I loved your point on working to make people more aware that you do in fact need the tools and accommodations! It encouraged me to try to be more assertive in my needs. I always fall prey to internalized ableism (I’m not dosabiled enough to need this; i have more physical abilities than others who needs this accomodation too, etc) I’ve been traveling in Europe and I’ve noticed how hard it is to ask someone to give you their seat on a train or give me a few more inches of space. Having chronic pain that fluxuates (not entirely sure what it’s from) combined with SPD (sensory processing disorder) makes it hard to stand for long periods of time (sensory wise sitting gives me more space to calm down) but I’m too introverted and socially anxious to ask for someone to give up their seat. The one time I did the person gave me a very confused look and didn’t seem very happy about having to move (but the guy next to him asked if I was okay which was sweet).
A medical doctor with cerebral palsy here. Just listening in 2020 and I'm ticking some misconceptions that apply to my condition too. Wish you a happy life. Courage girl. There is a hero in you. Never give up
I have a Eds and everyone at school says that’s not a disability or ur doing it for attention. My own mother doesn’t even believe me sometimes. It took me five months of agony,pain and multiple hospital visits. I so very much appreciate u for sharing this with the world because some people just don’t understand and that can be hard for people like us and like u said it can be dangerous in some moments. U are a great role model for me and again thx so much for sharing
This is such a great video! I love what you said at the end, and it’s so true, anyone can become disabled at any time. And I can totally relate to you when you said sometimes you can and sometimes you can’t. I am legally blind, so there are some things I can see and some things I can’t. And I get that misconception all the time, either you’re blind or you’re not. I did this tag on my channel as well, and I think it’s so important for everyone to do it
The top overweight to be sick one hit me in the feels cause that’s been my one barrier (other than lack of funds) for getting my chronic pain diagnosed. I’ve had PTs legit go “wow you’re super bendy” and then give me a hard time for my stamina in exercises 🙃. Doctors, knowing I have PCOS have only fixated on “oh you only lost 4 pounds since last time” meanwhile I have to fling myself onto the table and wait for a “you’ll feel better when you lose the weight” speech. Like I’m at my wits end and that actually made me feel a bit less alone so thank you.
I'm trying to get accurate diagnosis so I can apply for NDIS support, it's so daunting and your videos and this community help me cope with the time and pain. Thanks! People wouldn't see how my pain fog, eyesight, tachycardia and muscle pain are dynamic disabilities and all interconnected. If one is triggered, it sets off a cascade that is invisible. I'm working on signals, right now my family know that if I sit down, that's a big pain cue.
I've had my crutches kicked out from under me before. My foot was broken and my joints were getting bad from the crutches. When they kicked them out from under me they said maybe now you'll need them. My friend who was also on crutches had her leg kicked where they said maybe now it's really broken she had 4 fractures in her leg already. People are cruel
I'm about to say something and I hope you don't take this the wrong way. I have extremely severe chronic pain DAILY. Yes it took me many many years to get diagnosed. I found out I have EDS through 23 and me and then taking it to the genetic doctor. I've been through all this except since 2004 I thought I had Lupus, then had another doctor tell me NO I "only" have Fibromyalgia. Anyways I've been through it all even doctors telling me it all in my head. Even been put in a mental hospital- whole nother story. I'm getting lost trying to explain myself- per typical! Ok back to what I was going to say. I know that you said that pain medicine does NOT work for you. I Totally Get It! I've been there done that! I don't want to assume anything of course and I don't want to offend you by asking the dreaded question (have you tried.....) ok but I am a fellow spoonie; and although we are DEFINITELY NOT ALL THE SAME! I'm really thinking about how most doctors including pain management, think. Especially nowadays with the so called "opiate epidemic". Which I won't get into. I am wondering have you been able to find a knowledgeable, caring, compassionate doctor. I finally found one last month. I always had trouble with meds not working or only working for 2 days and stopping. I've never woke up during surgery, can't even imagine! I have been told it takes a lot to keep me under and I have found that I don't get numb from Lidocaine or even the dentist with Novicane. My dentist has to give me 5x the highest normal dose of Novicane plus an extra med Marcan. So I just want to know have they tried going outside the norm? And tried a really High dose of narcotic pain meds? Honestly I'm currently on what most doctors would consider an extremely strong dose of opiate medication. I have been on it for 2 weeks now along with some double dose trigger point injections. I'm not saying this takes away my pain completely. That's NEVER going to happen. As wall as it's not going to stop Flares! OMG just got over spending 3 days on my back with pillows and blankets where needed. At times I couldn't even hold things, It hurt to walk even with my rollater. At times when someone was here I would sit on my rollater seat and be pushed into the bathroom, for safety reasons your not supposed to do that. Well im gonna do whatever it takes. I've had multiple surgeries and I always wake up immediately afterwards SCREAMING IN Pain! I mean immediately, like before they can even wheel me to recovery. The usual scenario is a frantic nurse or anesthesiologist calling the doctor frantically asking what to do because they have usually already given me a dose of pain meds strong enough to help most people. Unfortunately I'm not "most" people. They are usually in disbelief that someone could be in so much pain. That's a whole long story I could preach about for days. So to finally end his rambling comment Lol😀. Has a doctor tried giving you a dose of pain meds that's above and beyond the norm? Also not only an extremely high dose but also high doses of different types. Like every doctors gold standard for high pain seems to be Morphine but sorry not even double the next dose; morphine just doesn't work at all! I had a pain pump once and it had morphine, It was set at max dose. I was screaming and crying so bad another doctor said hey switch her meds. They switched it to Fentanyl and I got some relief. Then when they took away the pump. They were giving me I V Fentanyl every 4hrs. Along with oxycodone every 2hrs. As needed. This was at Cleavland Clinic in Weston Florida. I live in Cape Coral FL. Which is Lee co. In this county if you go to any local hospitals they automatically think I'm just a drug seeker! I have to say about 95% of the doctors are the same. Thank God I found a real ligitamit one that understands EDS, Lupus, and all the other multiple diagnoses. He is a pain management specialist but not just that he is a Physiatrist and specialist in rehabilitation medicine. He also understands We Are All DIFFERENT!!! I Hpe you can find Someone willing to think outside the box and understand that there is a spectrum and actually LISTEN to the patient. I wish the best for you. I'm here for you, and would like to support you in anyway I can. Your videos help me feel support. I thank you. ❤💛💚💙💜💖
I'm new here. Honestly, I don't remember how I found you but I'm really grateful that you are sharing. But if you haven't seen Simon and Martina (eatyoursushi) on youtube I'd recommend you give Martina's videos on #buildaladder she also has EDS and it was the first time I had even heard about it. I'm so glad I know about it now. So thank you for sharing. #RepresentationMatters
I adore your channel. I am also and EDS-er with various comorbidities. The way you talk about fluid mobility has really helped me cope with a lot of the "you're faking it" ableist crap I internalized over the years as a disabled dancer who uses multiple configurations of braces and mobility aids. It has also helped me explain to other's that just because they see me doing XYZ at one point in time, that doesn't tell the whole story about my disability and my mobility limits at any other point in time. So thank you so much for everything you do for our community.
While I'm very thankful that I don't have EDS from how you described it, I do have a disability. When I was about 3 years old I got tested for autism. At the time I was diagnosed as autistic, it was uncommon to test girls. Originally they wanted to test my brother but the doctor at the time said my brother was normal. After they tested him my parents had me tested for autism and I came back as being autistic. When I was in third grade they retested me and I found it I was higher on the spectrum which meant I can function in a normal classroom. Autism in my opinion has so many misconceptions like saying it's not a real disability or combined in a mental health setting.
Hi Annie, I just found your channel. You’re explaining things so well. :-) My mom and I were just finally clinically diagnosed with EDS (two year wait list for the EDS clinic and genetic testing). We likely might have one of the rare forms of EDS as my mom is visually impaired from detached retinas due to blue sclera (thin eye tissue) and I’ve had surgery for a hole in one of mine. If I hadn’t been seeing retinal specialists since I was 4 when my mom lost the first bit of her sight I’d likely be visually impaired or blind now. I hear you about the episodic/fluid and people not understanding. One of my main EDS related issues is dizziness and blood pressure drops when I’m standing still. I can walk (with Nordic walking poles - best for grounding and taking pressure and weight off my feet, ankles, Achilles, knees, hips) but standing is a huge issue. It’s hard for people to understand how I can do spin classes (at home with modifications) and walk longer distances but have a disability with standing and taking busses (severe motion sickness that has triggered tachycardia and an ambulance ride). So I can walk several km (on good, non-migraine days, when I don’t have ankle or Achilles injuries/flareups) and can swim 1-2km (because the water pressure pushes the blood in my legs back up, and I’m essentially laying down!) but will need a wheelchair at airports. Looking forward to watching more of your videos!
Always so happy to see your videos in my sub box! :) Such a great video, and the timing is really perfect, because Meghan Tonjes recently uploaded a video on chronic pain, but CW for the title "I Get Why People Wanna Die" and discussion of suicidal ideation and chronic pain. Also, Bitch magazine, one of my favorite feminist publications, published a bunch of articles in their Saturday weekly reader (weekly email with lots of great articles from Bitch) about women and femme's sickness and pain, how and why the medical establishment ignores and dismisses it and how this is harmful. I can't highly recommend it enough.
I recently in the past 6 months went to the doctors after my shoulder popped out (its happened a few times) and finally got an answer about my numerous health problems (digestive issues, poor vision, hypermobility, fatigue, depression, poor vision, chronic pain) and it was explained as a collagen issue. EDS was not brought up but I now think I need to persue further testing for EDS as Im currently not entitled by my healthcare for any treatment relevant to EDS. I cant believe this is something people get misdiagnosed or ignored about. Sending lots of love!! The description about not emoting pain hit so hard its so hard to explain to family how Im in pain but not emoting.
Ive never used a wheelchair or cane or other walking aid but I frequently have to stop and sit down after walking to the great confusion of those around me. I think I should just push to get some form of walking aid and not worry about being embarassed about needing one at 20 years old.
I have EDS and fibromyalgia. I think the biggest misconception about EDS amongst doctors is that we have a certain "look", skinny, contortionist, middle class, young women. I'm not especially flexible. I'm definitely not skinny and I'm not that young any more. I still have EDS.
yes!! so glad to see someone in the eds community talk about weight. i always feel like such a weird outlier in the community for being overweight. and not just a little overweight either. amazing insights as always
Wow this was so relatable. I have EDS as well. I have never thought that anyone could become a member of the diability community at any point, but it's so true! Thank you for spreading awareness!
Thank you, Thank you, Thank you Annie!!! Brilliantly said (in my opinion) as a disabled person. Keep going and fantastic closing words. Shout out from the UK! Together we can make change
Thank you for this video. It's so hard being a disabled person seen as a faker because of weight and appearance. It's so so so frustrating. Hope life's being as nice to you as possible.
I find myself watching your videos and agreeing out loud or finishing your sentences. I have classical eds too and you are literally the only youtuber I've found with classical! anyways, watching your videos feels like hanging with a friend or like support system? like your videos are helping so much and I hope you know that
I was interested by what you meant when you said that putting your arms above your head was terrible. I struggle with lifting mine myself, it makes me super fatigued, it hurts, and it makes my head pound like I'm about to pass out
In all seriousness,Annie, I love that you do and (probably,according to a cardiologist) have eds which could accompany my POTS. CUurrently, I am using a transport chair because I pop a shoulder out every time I use my big,bulky,50-lb manual chair. Do you have any advice on asking my mom for a lowercase or a custom power-assisted chair (since we have good i surance?)
i don't have chronic pain but i have chronic migranes and i get that "pain tolerance thing", migranes that are very painful and would leave someone on bed all day, i handle them, yes it's still horrible but i'm used to it, if i laid down and stopped doing things everytime i got a migrane, i would lay in bed almost everyday and do nothing with my life. but then, when the migraine is above of what i can handle it's noticeable bc i can't even function
I was diagnosed with Marfan syndrome as a kid. Don't want to go into to much details I need to get retested since those medical records were lost, I already know because I am obese (300 pounds) I will definitely hear, "you don't look like you have Marfan Syndrome." 🙄 I don't fit the super skinny stereotype of the syndrome like I did as a child.
dude same hat on the jaw thing... i couldn't open my mouth wider than a certain amount for a whole year because my jaw would full on dislocate. luckily it stopped doing that miraculously but it still subluxates from time to time and thats.. shitty
I relate to so mutch off this, The doctors don't think that i have it beceause it is to rare and that my skin isn't stretchy enough. I hate it and EDS is the only thing that i have fond that would explain all my pain. I still don't have an diagnosis and it started 9 years ago.
Hey... So I'm very sure I have EDS, but here where I live, there is only a Pediatrician geneticist. Idk what to do. I can feel myself becoming more weak and fragile. Its really not good for my mental health. Do you have a support group you would suggest? Please help 🙏
I don't know about EDS, i reach about it and studies on eds. it pain about cheek, joint, muscles, right? Dr help you for good treatment to you? I read other POTS mean Postural Orthostatic Tachycardia Syndrome, you will suffer or bad things in body? right.
I have chronic psychiatric disabilities and live on benefit from the state. I also writes novels when my health allows me. Is it wrong to write about a main character with EDS? I'm doing research and tend to do that during at least a year and from multiple sources, both medical and more personal like this video. Am I being a bad ally by giving you people a voice? I always write about people with disabilities, usually psychiatric ones, because I want to give visability to our little world that no one knows about and HUMANIZE us. Schizophrenics aren't dangerous murderers, but rather gay, south african and liking to sing. (At least in my book, he is.) Should I abandon this EDS book idea because you seem to say we allies do things wrong? I think it's great when allies want to join in on a fight, because alone it's very difficult to do for a minority. Strength in numbers, you know. Anyways, I think you seem very nice and cute. I recognise that brain fog, have lots of that myself. Take care!
+@@Grimwalkerx No, of course not. I'm only in the research state. Haven't started writing yet. And from a publisher wants to accept my book to it's out in the shops it takes about 2 years. Lots of editing, marketing and stuff. I wrote this comment 2 months ago, lol. Plus, it's not in English. Sorry.
@@SamirCCat ah I see lol. Saw your comment and liked the idea but forgot to check the date on it. When/if you get to write it you will have to let me know. Iv been wanting to write a novel for a few months and have just been researching too.
PT, developing muscle tone and losing weight really can help. I know, it can be really hard and annoying to hear but it’s really important with EDS. It’s a lot when you’re in pain and exhausted but it can help in the long run. Muscle can keep the lose joints a bit better in their place and excess weight can damage your joints in general. My physiatrist told me not to use any aids or supports and I kind of agree with him. I have hEDS and feel like shit everyday because of it but I can’t just neglect my body every time I feel like shit. (Because that would mean I wouldn’t ever get up from my bed.) I mean, to hell with this disease. I just dislocated my thumb from trying to pull my up hiking skirt back down and I’m mad, in pain and looking at EDS TH-cam videos for some kind of comfort.
So your just a bit flexible then? I have EDS to and it's astonishing how many people including drs think eds = being good at yoga and totally incapable of understanding that it could be bad or hurt You randomly came up on autoplay nice to know about some good information being made You say about you not getting a dx because you didn't fit exactly I was a 9/9 beighton skin that is like crap old elastic and took me till mid 20s I was everything before that ignored labeled drug seeker all kinds of mental health and tendonitus of the body (yes a doc expected me to think that was a dx) it's so sad that people with EDS and other things take such a battle to be taken seriously
When I have told medical professionals that I have EDS they assume I do not because I do not have a very severe case of it. Now I'm even scared to mention it. People are just going to assume I'm lying or mistaken or an idiot.
You contradict a lot of things you say. It sounds like you need to look into mental health and advocate for that. Think of all the good you could do. Fatigue and sleeping for hours sounds more like depression. I know I'm being an arm chair therapist right now BUT I think you would be surprised how a ton of your symptoms will magically vanish. I don't think you're in the amount of physical pain you say you are and how offensive is it to a doctor that you think you know more than them? Come on now.
Hypermobilty and EDS tends to come with a disorder called chronic fatigue syndrome which means that no matter how much sleep you get you still are tired. I wouldn't wish this on my worse enemy this can be a painful condition i've had it all my life and are in pain everyday to the point I'm in tears from walking less than 5mins A lot of doctors don't have an understanding of these conditions so yes we have to go in prepared to know more than them unless its a specialist Please go away and do research before commenting on something which by the looks of it you don't know anything about
This is a prime example how ignorant people treat an EDS patient. Claiming that seemingly invisible but very true physical illness is "all in your head" or "you are just depressed and imagining your pain" is insulting! I have hEDS nothing in this is easy, living with incurable disease or getting the right diagnosis and idiots like you make our life even more difficult.
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"If you fight for disabled people you fight for everyone. "
I really like this, thank you!
I don't have EDS, but I do have chronic illness and disability in the form of arthritis and fibromyalgia, and I find it super frustrating that abled folks will sometimes say "so CAN you do the thing" when the answer is "yes, but it will be the only thing I do all day and cause a lot of pain". No one expects abled people to do things that cause serious pain and will utterly exhaust them - in fact, that's why elevators and cars and such exist.
And don't get me started on people's beliefs about all the money we "get". (And don't.)
Alexandra Pentland right?? Like at most is 100-600 a month at best.under minum wage for someome to live off and thise are for meds and transportation n specialist.fucken assholes
I think the most common misconception I face is that I'm going to get better. People who have seen me walk around with a cane for years will ask me when I'm going to stop using it. When people ask how I'm doing, they'll almost invariably follow it up with "But it's getting better, right?" And it's a hard thing to answer, because, like... I work really hard at physical therapy to get stronger, so I hate to say "no" (as that will generally result in "have you tried...?"), but if I say "yes", then it just reinforces the idea that this is temporary. Also, a really common reaction when I say that EDS is incurable, is "For now! Maybe they'll cure it!" Sigh. Able-bodied people really can't fathom the idea that anyone could be okay with having a disability, particularly a painful one. I don't need false hope, I just need to be believed.
I also have an incurable disability, and I've come to hate when people tell me a cure could come along any day, like that's supposed to give me hope. And I get it, I get that they are well-intentioned and I know they want to provide hope. But there's not a cure, and we don't know if/when there will be one, and in the meantime I'm dealing with this *now.* Like you said, I don't need false hope.
"I can't emote that pain all the time" SO relatable! I'll go to the ER or my PCP and they'll say "you don't look like you're in pain". Well, yeah, because if I did I wouldn't be able to get my needs met because people would get tired of being around me real quick.
we talked on twitter; I jut got diagnosed with hEDS. When you mentioned "invisible canes" I was like OMG I LOVE WALLS.
Me too ugh just eds things
I've always, always leaned on walls. I didn't get my hEDS diagnosis until recently, but things have only made sense to me now. #teamwall
Walls make life accessible to me.
Or tables or some other edges you can lean on. With POTS standing against a wall is still a risk for fainting.
Me, but with chronic fatigue
Eds-er here. One of my favorites is when ppl say "oh i wish i was flexible." Ummm no.
Videos like this are hashtag relatable omg 😔❤
My dad and I have cEDS and while I have always worn glasses didn't realize that my eyesight would be impacted by the EDS until I went to the optometrist this year and he told me that the muscles in my eyes are degenerating like he sees in the elderly, and they are not focussing on the same part of my retina that they used to. It's just one more thing but siiiiiigh.
TBH recently I've been getting so much better about doing things like asking for a seat on a bus, and actually pushing my dr to see why my resting heart rate is 120 (atrial tachycardia, apparently!) so that I get medication to alleviate the symptoms.
Being your own advocate is harder, I think, when it looks like there is nothing wrong. I also have maintained work through occupational conditioning (and I have no doubt if I stopped working I would lose most of my mobility) but I didn't realise how much the pain itself affects me until going through therapy at the hospital pain clinic.
Holy crap, this entire video is me EXACTLY! I HEAR YOU & CAN RELATE SOOOOO WELL! I have hEDS (hypermobile EDS), Dysautonomia/POTS, Chiari Malformation (the bottom of my brain sags out of my skull into spinal canal), craniocervical instability (lax ligaments in my spine allow my top of my spine to push into my brain stem which cause my dysautonomia), hearing loss, insomnia followed by hypersomnia, among a bunch of other stuff. Almost all of my medical issues are not only chronic, but they're invisible & have no cure. It took me years to get a diagnosis & thousands of dollars traveling to specialists to get proper diagnoses & care. People often hear connective tissue & think marfans. If you aren't skinny with long limbs, they often mistakenly dismiss it as a possibility. My POTS was written off by several drs as anxiety, then prescribed xanax & antidepressant. It wasn't getting better & I noticed that my heart would race whenever I stood up. After doing some research, I heard about doing a "poor man tilt table test" where you record heart rate & BP while laying flat, sit up for 5mins take it again, & stand for 5 mins and take it again. I did this for about a month at different times of the day & then brought it to my primary care dr who realized I was on to something & sent me to cardiologist. EVERY SINGLE THING I HAVE BEEN DIAGNOSED WITH IN THE PAST 4 YEARS HAS BEEN DUE TO MY RESEARCHING MY SYMPTOMS. It was only then when I would request a referral to specialists that they would find I was right!
About mobility: I have to use a walker & when I have to walk longer distances, I use a wheelchair. I have a handicap decal but I have been yelled at for not being "disabled enough". And YES about using the "invisible" mobility aids. I use my kids' heads a lot, especially around the house! I've never heard it called that, but I like that description!
About the subluxations/dislocations: My most painful one is when my rib pops out. Some people think that this is not real & I am making it up. (But really, who would pick their rib of all locations as a place for having a dislocation?!) My husband has to shove on my chest in just the right way to put it back in place. He has to do so carefully so he doesn't accidentally break a rib or cause more problems in my spine. Sometimes when I'm actually walking with my walker, my ankle & knee will suddenly just give out. I will either fall into the walker (if I'm lucky & i can catch myself in time) or fall on the ground and hope I don't dislocate a wrist or shoulder. I haven't had my hips dislocate but I know my cousin has it happen often. My wrists & shoulder are the main subluxers. Well that and my jaw. If I open it too wide like when I yawn, it dislocates. Or when I'm eating & sometimes when I brush my teeth too. It is so loud & disturbing to look at (so i am told!) Even my physical therapist said he'd never seen anyone that it dislocates that bad!
For me, the accessibility of public spaces is frustrating to me. Places like the movie theater frustrate me because you know you'll be limited to one of a handful of seats in the front, so essentially you have no real choice of seat selection which is why I never go. On the rare occasion I do go to the movies, like when Black Panther came out, our local movie theater had signage saying headsets & CC devices were available so I was relieved. (Since my brain surgeries, my hearing loss has been much worse, especially if people whisper & some background noises so I generally use CCs at home.) When I asked the guy at the ticket counter for CC device, he said they didn't even have them, that they only had the headsets. This is just one example of thousands that I know you can relate to about accessibility in public spaces.
Hi Annie! My university is starting an interdisciplinary disability scholars program and I am student peer mentor on the staff. I am a fellow disabled person and I have been watching your videos over the past year and a half as my symptoms have emerged and worsened. There was some extra money in the budget for the program and I suggested buying the participants "The Future is Accessible" merchandise, and my boss loved the idea. So if you get a huge order near the end of the month, it's from us at the UD Acesss: Ability Scholars program. I don't know the specifics yet, but a lot of the program is made up of disability allies rather than disabled people, so I'm excited to be a disabled voice to help them become better in their allyship.
I've been watching your vids for a while now, and I've had horrible chronic pain my whole life. You actually inspired me to finally get a cane, and get medical attention for it. I'm getting x-rays soon to see if it's due to my spine, possibly a crushed disk or pressure on my spinal cord.
I have a genetic condition that affects a lot of my organs. Mainly my heart. And I can't walk super long distances. I use a mobility scooter to get around some places and people have said on mor than one occasion "but you can walk!" Or "you didn't need that yesterday." Quite irritating
I've missed you, Annie!!! Funny enough in the last two weeks I've been telling people how much of my internalized ableism I've been able to identify because of what I have learned from you and the people I've connected with because of you. I am reaching out into more disabled spaces and finding support in ways I couldn't have fathomed 15yrs ago when I had my accident. I am feeling permission to be seen and heard in ways I never would have, and much of it started when I stumbled upon your channel last year.
I am ridding myself of toxic hurtful thoughts and people, in part because of you. I am raising a child to know that I deserve to take up space in this world--that all bodies are valid--in part because of you. I am passing that education on and making anti-ableism allies, in part because of you. 💜💚💙💜💚💙💜
I think a decent proportion of your viewers are people with disabilities or have chronic pain themselves, and many of the rest are more informed and empathetic humans because of your education. So when you need to take time for yourself, when life simply isn't giving you any extra spoons at all, know that your body of work stands and that it is being pushed forward. While you are resting and recharging, we all are patiently and lovingly waiting for when you return.
"Do you do anything to combat these misconceptions?" You do it really well
I loved your point on working to make people more aware that you do in fact need the tools and accommodations! It encouraged me to try to be more assertive in my needs. I always fall prey to internalized ableism (I’m not dosabiled enough to need this; i have more physical abilities than others who needs this accomodation too, etc)
I’ve been traveling in Europe and I’ve noticed how hard it is to ask someone to give you their seat on a train or give me a few more inches of space. Having chronic pain that fluxuates (not entirely sure what it’s from) combined with SPD (sensory processing disorder) makes it hard to stand for long periods of time (sensory wise sitting gives me more space to calm down) but I’m too introverted and socially anxious to ask for someone to give up their seat. The one time I did the person gave me a very confused look and didn’t seem very happy about having to move (but the guy next to him asked if I was okay which was sweet).
A medical doctor with cerebral palsy here. Just listening in 2020 and I'm ticking some misconceptions that apply to my condition too.
Wish you a happy life. Courage girl. There is a hero in you. Never give up
I have a Eds and everyone at school says that’s not a disability or ur doing it for attention. My own mother doesn’t even believe me sometimes. It took me five months of agony,pain and multiple hospital visits. I so very much appreciate u for sharing this with the world because some people just don’t understand and that can be hard for people like us and like u said it can be dangerous in some moments. U are a great role model for me and again thx so much for sharing
This is such a great video! I love what you said at the end, and it’s so true, anyone can become disabled at any time. And I can totally relate to you when you said sometimes you can and sometimes you can’t. I am legally blind, so there are some things I can see and some things I can’t. And I get that misconception all the time, either you’re blind or you’re not. I did this tag on my channel as well, and I think it’s so important for everyone to do it
The top overweight to be sick one hit me in the feels cause that’s been my one barrier (other than lack of funds) for getting my chronic pain diagnosed. I’ve had PTs legit go “wow you’re super bendy” and then give me a hard time for my stamina in exercises 🙃. Doctors, knowing I have PCOS have only fixated on “oh you only lost 4 pounds since last time” meanwhile I have to fling myself onto the table and wait for a “you’ll feel better when you lose the weight” speech. Like I’m at my wits end and that actually made me feel a bit less alone so thank you.
I'm trying to get accurate diagnosis so I can apply for NDIS support, it's so daunting and your videos and this community help me cope with the time and pain. Thanks!
People wouldn't see how my pain fog, eyesight, tachycardia and muscle pain are dynamic disabilities and all interconnected.
If one is triggered, it sets off a cascade that is invisible.
I'm working on signals, right now my family know that if I sit down, that's a big pain cue.
I've had my crutches kicked out from under me before. My foot was broken and my joints were getting bad from the crutches. When they kicked them out from under me they said maybe now you'll need them. My friend who was also on crutches had her leg kicked where they said maybe now it's really broken she had 4 fractures in her leg already. People are cruel
I'm about to say something and I hope you don't take this the wrong way. I have extremely severe chronic pain DAILY. Yes it took me many many years to get diagnosed. I found out I have EDS through 23 and me and then taking it to the genetic doctor. I've been through all this except since 2004 I thought I had Lupus, then had another doctor tell me NO I "only" have Fibromyalgia. Anyways I've been through it all even doctors telling me it all in my head. Even been put in a mental hospital- whole nother story. I'm getting lost trying to explain myself- per typical! Ok back to what I was going to say. I know that you said that pain medicine does NOT work for you. I Totally Get It! I've been there done that! I don't want to assume anything of course and I don't want to offend you by asking the dreaded question (have you tried.....) ok but I am a fellow spoonie; and although we are DEFINITELY NOT ALL THE SAME! I'm really thinking about how most doctors including pain management, think. Especially nowadays with the so called "opiate epidemic". Which I won't get into. I am wondering have you been able to find a knowledgeable, caring, compassionate doctor. I finally found one last month. I always had trouble with meds not working or only working for 2 days and stopping. I've never woke up during surgery, can't even imagine! I have been told it takes a lot to keep me under and I have found that I don't get numb from Lidocaine or even the dentist with Novicane. My dentist has to give me 5x the highest normal dose of Novicane plus an extra med Marcan. So I just want to know have they tried going outside the norm? And tried a really High dose of narcotic pain meds? Honestly I'm currently on what most doctors would consider an extremely strong dose of opiate medication. I have been on it for 2 weeks now along with some double dose trigger point injections. I'm not saying this takes away my pain completely. That's NEVER going to happen. As wall as it's not going to stop Flares! OMG just got over spending 3 days on my back with pillows and blankets where needed. At times I couldn't even hold things, It hurt to walk even with my rollater. At times when someone was here I would sit on my rollater seat and be pushed into the bathroom, for safety reasons your not supposed to do that. Well im gonna do whatever it takes. I've had multiple surgeries and I always wake up immediately afterwards SCREAMING IN Pain! I mean immediately, like before they can even wheel me to recovery. The usual scenario is a frantic nurse or anesthesiologist calling the doctor frantically asking what to do because they have usually already given me a dose of pain meds strong enough to help most people. Unfortunately I'm not "most" people. They are usually in disbelief that someone could be in so much pain. That's a whole long story I could preach about for days. So to finally end his rambling comment Lol😀. Has a doctor tried giving you a dose of pain meds that's above and beyond the norm? Also not only an extremely high dose but also high doses of different types. Like every doctors gold standard for high pain seems to be Morphine but sorry not even double the next dose; morphine just doesn't work at all! I had a pain pump once and it had morphine, It was set at max dose. I was screaming and crying so bad another doctor said hey switch her meds. They switched it to Fentanyl and I got some relief. Then when they took away the pump. They were giving me I V Fentanyl every 4hrs. Along with oxycodone every 2hrs. As needed. This was at Cleavland Clinic in Weston Florida. I live in Cape Coral FL. Which is Lee co. In this county if you go to any local hospitals they automatically think I'm just a drug seeker! I have to say about 95% of the doctors are the same. Thank God I found a real ligitamit one that understands EDS, Lupus, and all the other multiple diagnoses. He is a pain management specialist but not just that he is a Physiatrist and specialist in rehabilitation medicine. He also understands We Are All DIFFERENT!!! I Hpe you can find Someone willing to think outside the box and understand that there is a spectrum and actually LISTEN to the patient. I wish the best for you. I'm here for you, and would like to support you in anyway I can. Your videos help me feel support. I thank you. ❤💛💚💙💜💖
It's more quick and easy to say where it's not hurting in your body that where it's painful with EDS !
I'm new here. Honestly, I don't remember how I found you but I'm really grateful that you are sharing. But if you haven't seen Simon and Martina (eatyoursushi) on youtube I'd recommend you give Martina's videos on #buildaladder she also has EDS and it was the first time I had even heard about it. I'm so glad I know about it now. So thank you for sharing. #RepresentationMatters
I adore your channel. I am also and EDS-er with various comorbidities. The way you talk about fluid mobility has really helped me cope with a lot of the "you're faking it" ableist crap I internalized over the years as a disabled dancer who uses multiple configurations of braces and mobility aids. It has also helped me explain to other's that just because they see me doing XYZ at one point in time, that doesn't tell the whole story about my disability and my mobility limits at any other point in time. So thank you so much for everything you do for our community.
While I'm very thankful that I don't have EDS from how you described it, I do have a disability. When I was about 3 years old I got tested for autism. At the time I was diagnosed as autistic, it was uncommon to test girls. Originally they wanted to test my brother but the doctor at the time said my brother was normal. After they tested him my parents had me tested for autism and I came back as being autistic. When I was in third grade they retested me and I found it I was higher on the spectrum which meant I can function in a normal classroom. Autism in my opinion has so many misconceptions like saying it's not a real disability or combined in a mental health setting.
Hi Annie, I just found your channel. You’re explaining things so well. :-)
My mom and I were just finally clinically diagnosed with EDS (two year wait list for the EDS clinic and genetic testing). We likely might have one of the rare forms of EDS as my mom is visually impaired from detached retinas due to blue sclera (thin eye tissue) and I’ve had surgery for a hole in one of mine. If I hadn’t been seeing retinal specialists since I was 4 when my mom lost the first bit of her sight I’d likely be visually impaired or blind now.
I hear you about the episodic/fluid and people not understanding. One of my main EDS related issues is dizziness and blood pressure drops when I’m standing still. I can walk (with Nordic walking poles - best for grounding and taking pressure and weight off my feet, ankles, Achilles, knees, hips) but standing is a huge issue.
It’s hard for people to understand how I can do spin classes (at home with modifications) and walk longer distances but have a disability with standing and taking busses (severe motion sickness that has triggered tachycardia and an ambulance ride). So I can walk several km (on good, non-migraine days, when I don’t have ankle or Achilles injuries/flareups) and can swim 1-2km (because the water pressure pushes the blood in my legs back up, and I’m essentially laying down!) but will need a wheelchair at airports.
Looking forward to watching more of your videos!
Always so happy to see your videos in my sub box! :) Such a great video, and the timing is really perfect, because Meghan Tonjes recently uploaded a video on chronic pain, but CW for the title "I Get Why People Wanna Die" and discussion of suicidal ideation and chronic pain. Also, Bitch magazine, one of my favorite feminist publications, published a bunch of articles in their Saturday weekly reader (weekly email with lots of great articles from Bitch) about women and femme's sickness and pain, how and why the medical establishment ignores and dismisses it and how this is harmful. I can't highly recommend it enough.
I recently in the past 6 months went to the doctors after my shoulder popped out (its happened a few times) and finally got an answer about my numerous health problems (digestive issues, poor vision, hypermobility, fatigue, depression, poor vision, chronic pain) and it was explained as a collagen issue. EDS was not brought up but I now think I need to persue further testing for EDS as Im currently not entitled by my healthcare for any treatment relevant to EDS.
I cant believe this is something people get misdiagnosed or ignored about. Sending lots of love!!
The description about not emoting pain hit so hard its so hard to explain to family how Im in pain but not emoting.
Ive never used a wheelchair or cane or other walking aid but I frequently have to stop and sit down after walking to the great confusion of those around me. I think I should just push to get some form of walking aid and not worry about being embarassed about needing one at 20 years old.
I have EDS and fibromyalgia. I think the biggest misconception about EDS amongst doctors is that we have a certain "look", skinny, contortionist, middle class, young women.
I'm not especially flexible. I'm definitely not skinny and I'm not that young any more. I still have EDS.
yes!! so glad to see someone in the eds community talk about weight. i always feel like such a weird outlier in the community for being overweight. and not just a little overweight either. amazing insights as always
Wow this was so relatable. I have EDS as well. I have never thought that anyone could become a member of the diability community at any point, but it's so true! Thank you for spreading awareness!
I think you're beautiful and this video is so great!
Thank you, Thank you, Thank you Annie!!! Brilliantly said (in my opinion) as a disabled person. Keep going and fantastic closing words. Shout out from the UK! Together we can make change
Thank you for this video. It's so hard being a disabled person seen as a faker because of weight and appearance. It's so so so frustrating. Hope life's being as nice to you as possible.
Ignore the idiots. Cheers, Alison.
cool video, the one that disability is just one thing is something that really annoys me to. As does the disabled people are tragic one.
I was diagnosed with Heds on 9/10/18 so I find this very informativ. Thank you
I find myself watching your videos and agreeing out loud or finishing your sentences. I have classical eds too and you are literally the only youtuber I've found with classical! anyways, watching your videos feels like hanging with a friend or like support system? like your videos are helping so much and I hope you know that
I was interested by what you meant when you said that putting your arms above your head was terrible. I struggle with lifting mine myself, it makes me super fatigued, it hurts, and it makes my head pound like I'm about to pass out
Yo same boat! All the feels! I just got diagnosed with hEDS a couple weeks ago.
And these things super help me with my disability stuff and have hope that it might get better xx
In all seriousness,Annie, I love that you do and (probably,according to a cardiologist) have eds which could accompany my POTS. CUurrently, I am using a transport chair because I pop a shoulder out every time I use my big,bulky,50-lb manual chair. Do you have any advice on asking my mom for a lowercase or a custom power-assisted chair (since we have good i surance?)
Emilie Smith EZlite power chair
Really nice video!
i don't have chronic pain but i have chronic migranes and i get that "pain tolerance thing", migranes that are very painful and would leave someone on bed all day, i handle them, yes it's still horrible but i'm used to it, if i laid down and stopped doing things everytime i got a migrane, i would lay in bed almost everyday and do nothing with my life. but then, when the migraine is above of what i can handle it's noticeable bc i can't even function
Such a good video! Thanks it helps to know I’m not alone.
I was diagnosed with Marfan syndrome as a kid. Don't want to go into to much details I need to get retested since those medical records were lost, I already know because I am obese (300 pounds) I will definitely hear, "you don't look like you have Marfan Syndrome." 🙄 I don't fit the super skinny stereotype of the syndrome like I did as a child.
Thank you as usual for doing these videos!
dude same hat on the jaw thing... i couldn't open my mouth wider than a certain amount for a whole year because my jaw would full on dislocate. luckily it stopped doing that miraculously but it still subluxates from time to time and thats.. shitty
I seriously love your channel
My mom has MS, and whenever she has to go shopping she never let's anyone else use the cart, because she uses it to lean on.
i love your sweater omg
This is a great vid. Thanks for making it :)
I relate to so mutch off this, The doctors don't think that i have it beceause it is to rare and that my skin isn't stretchy enough. I hate it and EDS is the only thing that i have fond that would explain all my pain. I still don't have an diagnosis and it started 9 years ago.
You don't need stretchy skin! If it explains your symptoms you should persue your diagnosis! Good luck, I'm in a similar situation and I understand 💜
Hey... So I'm very sure I have EDS, but here where I live, there is only a Pediatrician geneticist. Idk what to do. I can feel myself becoming more weak and fragile. Its really not good for my mental health. Do you have a support group you would suggest? Please help 🙏
I don't know about EDS, i reach about it and studies on eds. it pain about cheek, joint, muscles, right? Dr help you for good treatment to you?
I read other POTS mean Postural Orthostatic Tachycardia Syndrome, you will suffer or bad things in body? right.
I have chronic psychiatric disabilities and live on benefit from the state. I also writes novels when my health allows me. Is it wrong to write about a main character with EDS? I'm doing research and tend to do that during at least a year and from multiple sources, both medical and more personal like this video. Am I being a bad ally by giving you people a voice? I always write about people with disabilities, usually psychiatric ones, because I want to give visability to our little world that no one knows about and HUMANIZE us. Schizophrenics aren't dangerous murderers, but rather gay, south african and liking to sing. (At least in my book, he is.) Should I abandon this EDS book idea because you seem to say we allies do things wrong? I think it's great when allies want to join in on a fight, because alone it's very difficult to do for a minority. Strength in numbers, you know.
Anyways, I think you seem very nice and cute. I recognise that brain fog, have lots of that myself. Take care!
Is your book out?
+@@Grimwalkerx No, of course not. I'm only in the research state. Haven't started writing yet. And from a publisher wants to accept my book to it's out in the shops it takes about 2 years. Lots of editing, marketing and stuff. I wrote this comment 2 months ago, lol. Plus, it's not in English. Sorry.
@@SamirCCat ah I see lol. Saw your comment and liked the idea but forgot to check the date on it. When/if you get to write it you will have to let me know. Iv been wanting to write a novel for a few months and have just been researching too.
Do you use med Mari J for relief? Would it work?
Was it hard to get disability benefits?
If i qm ever a person in power tge way u describe i will belive anyone no matter tge circumstances
👏👏👏👏👏👏👏👏👏👏
I have eds too vascular tape
!!! FELLOW C-EDS HEYO
PT, developing muscle tone and losing weight really can help. I know, it can be really hard and annoying to hear but it’s really important with EDS. It’s a lot when you’re in pain and exhausted but it can help in the long run. Muscle can keep the lose joints a bit better in their place and excess weight can damage your joints in general. My physiatrist told me not to use any aids or supports and I kind of agree with him.
I have hEDS and feel like shit everyday because of it but I can’t just neglect my body every time I feel like shit. (Because that would mean I wouldn’t ever get up from my bed.) I mean, to hell with this disease. I just dislocated my thumb from trying to pull my up hiking skirt back down and I’m mad, in pain and looking at EDS TH-cam videos for some kind of comfort.
So your just a bit flexible then? I have EDS to and it's astonishing how many people including drs think eds = being good at yoga and totally incapable of understanding that it could be bad or hurt
You randomly came up on autoplay nice to know about some good information being made
You say about you not getting a dx because you didn't fit exactly I was a 9/9 beighton skin that is like crap old elastic and took me till mid 20s I was everything before that ignored labeled drug seeker all kinds of mental health and tendonitus of the body (yes a doc expected me to think that was a dx) it's so sad that people with EDS and other things take such a battle to be taken seriously
When I have told medical professionals that I have EDS they assume I do not because I do not have a very severe case of it. Now I'm even scared to mention it. People are just going to assume I'm lying or mistaken or an idiot.
Dude ur my twin.im sorry
You contradict a lot of things you say. It sounds like you need to look into mental health and advocate for that. Think of all the good you could do. Fatigue and sleeping for hours sounds more like depression. I know I'm being an arm chair therapist right now BUT I think you would be surprised how a ton of your symptoms will magically vanish. I don't think you're in the amount of physical pain you say you are and how offensive is it to a doctor that you think you know more than them? Come on now.
Hypermobilty and EDS tends to come with a disorder called chronic fatigue syndrome which means that no matter how much sleep you get you still are tired.
I wouldn't wish this on my worse enemy this can be a painful condition i've had it all my life and are in pain everyday to the point I'm in tears from walking less than 5mins
A lot of doctors don't have an understanding of these conditions so yes we have to go in prepared to know more than them unless its a specialist
Please go away and do research before commenting on something which by the looks of it you don't know anything about
This is a prime example how ignorant people treat an EDS patient. Claiming that seemingly invisible but very true physical illness is "all in your head" or "you are just depressed and imagining your pain" is insulting! I have hEDS nothing in this is easy, living with incurable disease or getting the right diagnosis and idiots like you make our life even more difficult.
Yo same boat! All the feels! I just got diagnosed with hEDS a couple weeks ago.