doesn't surprise me that she's "not disabled enough" EDS and HSD aren't recognised as a disability for most parasports. it makes me furious. There is this crazy notion that if we just did enough physio we would all be fine, I do 3 hours physio a day, I can tell you, I am not fine....
Physical therapy injured me several times when I was going 3 times a week. The PTs would talk and laugh amongst themselves with patients on the tables and were not paying attention to us during massages and cupping etc. It was incredibly uncomfortable which made is hard to speak up. They didn't seem to have any idea what EDS was or how fragile our bodies are compared to their typical patients. One of the exercises I was supposed to do dislocated my rib(s) and it took me by complete surprise so which of course made the pain so much worse. They had no idea what to do and it was the owner of the practice who was working on me and had been chatting it up and ignoring me. After I could hardly breathe and was in tears he offered me ice and I said no and he just went to the other side of the room to continue talking with his friends. He left me sitting on the table crying and I had my service dog help me get down and I grabbed her, my backpack, and my crutches and left. I had seen them for 12 weeks on 3-4 different occasions and it was just like that all the time. The PT would set the patients up with strength training over in the corner gym area and would just walk away. Very poor bedside manner. I would explain that due to hip dysplasia and chronic dislocations in my hips I couldn't do the sit down recumbent bike. They treated me like I was just trying to get out of it. It also turns out I completely tore my rotator cuff doing the stretchy band pulling exercises. It took several years to finally get an MRI because my insurance required an x-ray first. That wouldn't show anything and they said since the x-rays have been clear all this time there's no reason to do an MRI. When I finally did get one it showed that not only are the muscles and tendons torn in there, but there was atrophy in all the muscles and soft tissue around it and all through my shoulder. So I need surgery and probably right after that, more PT. Yay.
I'm a professional wheelchair tennis player since 10 years. I have hEDS too. Because the classification rules have changed I'll be kicked out of my sport next year, after the Tokyo Paralympics. Step 1 of the classification system is check if you've got an "eligable disability". If you do, you move forward to step 2. If you don't, you're out. EDS is not on the list so I'm out. But if I would go to step 2, they would check my functional abilities. For example "can do x amount single leg high heel raises". I can't do those because of the joint instability. So I do not say "I'm not disabled enough". That implies I have more function then other players. I am disabled enough, I just don't have the right label. It sucks. I'm forced to give up my career. They take away my source of income. It's discrimination for sure. Thank you for making this item.
I think everyone should forward this video to the Paralympic Committee and ask them to take an extra look at their possibly discriminatory rules . It’s all about bringing attention to the right people. If enough of us take action , who knows what could happen.
For real! She is so great. I will refrain from saying 'inspiring' because I loath people telling me I'm inspiring for just living my life but bro... you're cool. Zebra strong!!! 🦓🦓✊✊
I also have hEDS - not strong enough for wheelchair racing as my wrists, elbows and shoulders are flaming piles of shit. I play powerchair football instead which I love.
On a similar note... A friend who is a fully state certified guide dog trainer at the biggest training facility had to FIGHT for her accommodations at work. She is severely dyslexic and even disability organizations can be ignorant over "hidden disabilities."
not in a wheelchair myself but I think it's so unfortunate that people who are can be criticized for "not being disabled enough". great video and well done for spreading awareness 😁👍🏼
Not disabled either but I'm of the opinion that as long as those that are told they're "not disabled enough" aren't given an unfair advantage they should compete. Like the Paralympic committee, who thought hypermobility equated to flexibility should have at least realized that being flexible has no impact on racing. If she uses the same equipment as everyone else, what's the issue?
@@penelope563 exactly. And hypermobility can easily affect upper body too while playing sports it doing anything. I don't understand what's not _disabled enough_ there
I have a brain injury, a few other health issues as well as hypermobility well it's actually undiagnosed heds and veds, and I've been told that I'm not disabled enough for disabled sports yet too disabled for able bodied sports so yeah I'm stuck in middle, I try and run but have difficulties with my knees dislocating, I try gymnastics and have my elbows and wrists dislocating as well as low in vit d (for some reason my body can't absorb vitamins and minerals so also lack in many other vits and mins) so break bones easily but not brittle bone disease so yeah I've been told that I'm too disabled for abled bodied sports and not disabled enough for disability sports yet I have friends who compete in disability sports and there isn't anything wrong with them and compete for special olympics so yeah but they live in a different country from me
I'm not in a wheelchair but I do have 25% hearing, in one ear. Have all my life. I wear a hearing-aid. That was enough for a deaf school to not let me escape the bullying hearing world because I was Too Hearing. So thanks that both sides hate me, there's no inbetween except where I exist. ~ It is definitely unfortunate but oh well. I hate that stuff with criteria is so strict for such a varying set of things. Nevermind signing up for Disability Allowance/PIP/whatever other countries' equivalent is, but for stuff like this in the Olympics, which I believe can just be a hobby? ~ There is not one type of blind. There is not one type of deaf. There is not one type of mental deficiency that defines how independent you are or how you deal with real world/outside the house stuff. (Autism etc) There is not one type of 'leg disability', as people can walk around a home 'comfortably' enough but then need sticks or a wheelchair/scooter to get around outside and then can't get into buildings because UGH we have to get the stupid ramp out everytime someone presses the buttooooon. ~glares at various banks and shops that only have stairs~ ~ Sorry, just.... yeah. You're right, OP.
I have heds and am waiting on delivery of my first custom wheelchair. After three different insurance companies denied me getting one I decided to go and pay for one out of pocket. All of my denials were because I'm "not disabled" it doesn't matter to them that I can't leave my house. I appreciate you covering someone with EDS.
I ended up buying my sport chair out of pocket as well because insurance will only cover rolators/walkers. The irony is that they pay for them but I put almost full body weight on my arms when I use it. Usually results in injuries or snapping the actual walker. Broke multiple walkers but they keep paying for them! Insurance is a game i swear
I have hEDS and I must say, Abby described it perfectly regarding the physical limitations. I would add one thing she briefly touched on. We have "good" days and bad days....and absolutely horrible days. We also have flares that can put us down like she said, when she could barely get to the bathroom and back. Those flares can last many many months or just a few days. She mentioned comorbidities. We Zebras suffer a lot with illness. The main trifecta are Gastroparesis which is stomach paralysis but it typically also means our intestines are also very sluggish or paralyzed as well. We don't have the strength in our gut to push food through and it just backs up, we have horrible constipation and some of us need feeding tubes that either go into the stomach or into the jejunum which is the entrance to the small intestines. And some of us even need IV nutrition called TPN (total parenteral nutrition) *I might have spelled that wrong) The next very common one we have is Dysautanomia and POTS. Our autonomic nervous system is the fight or flight response as well as how out body adjusts to changes that happen with things like movement, where we are in accordance to the space around us etc. It's complicated. The biggest problem we get is POTS (postural orthostatic hypotension) which is another reason a lot of us use a wheelchair. We have episodes of loss of consciousness when we go from sitting to standing or lying down to sitting, even bending over. If you have ever had to steady yourself because you stood up too fast, we go all the way out and down. It just means out blood vessels aren't strong enough (because like almost everything else they're made up of collagen which is what we are lacking and/or is defective and it IS degenerative so this all gets worse with age. I'm 46 and in bed almost all the time mostly due to pain and severe fatigue). Our vessels can't regulate the change in position to push the blood up to our brain fast enough. We also lack blood volume. We have less blood than the average person. We are extremely prone to severe chronic dehydration and like myself, we need daily (or whatever works for whoever) IV hydration which requires a central IV line typically in the chest that is threaded into a large vein in the neck and into the entrance of the atrium of the heart. We do our IV infusions ourselves at home and some have a nurse who comes to change the dressing or if we have a port (a long term little box under the skin that is accessed by a special needle that can either stay in or be removed). Last but most definitely not least is the most exciting part (sarcasm). Mast Cell Activation Syndrome/Disorder. Very complicated. Mast cells are allergy cells and they just go crazy over random things that are either airborne, ingested, used topically or even a cold or change in the body like pain or the heat or cold, literally anything can set off an allergic reaction that can be mild to deadly. We are the ones who wear masks no matter what while in public places around people or outside our house. Maybe today I have a reaction to strawberries that I don't have a reaction to next week. Or the other way around. They haven't figured out the exact reason why this happens to some Zebras but they think it's because the mast cells are made in the bone marrow and then they reside in the connective tissue, collagen. EDS is a connective tissue disease so it would make sense that defective collagen or connective tissue can cause problems with the abnormal release of mast cells to random triggers. Connective tissue is the glue that holds everything in the body together and makes things strong enough to hold joints together and make blood vessels function properly and digestion go smoothly. Since it's degenerative, defective, and we don't have enough....well it wreaks havoc on the all functions within the body. It's extremely painful and causes severe chronic fatigue. It's also a spectrum disorder. Like Abby explained some of us Zebras do just fine and it can be very debilitating for others. My wheelchair has battery powered wheels that assist my pushing without me needing a power chair. I have a portacath in my chest for constant IV access and I give myself saline infusions every day. I have to stay inside in the summer because of severe heat intolerance and geez, I could go on and on. I'm happy to answer questions if people have them. As long as you're not just being mean. If you read my entire comment, thank you. We definitely need more awareness so that people like Abby can be included and this genetic illness is not looked at as less disabling than say Cerebral Palsy or a spinal cord injury. Thank you to Abby for being so informative about EDS. I hope one day more people will actually listen. And I hope you are welcomed into the Paralympic Games. Take care my fellow Zebras!❤
Thank you for taking the time to describe the issues with which you contend on a daily basis. My daughter is a Pediatrician...tells me that being a physician is a matter of educated guessing. Your symptoms sound exceedingly challenging to pinpoint. At 74, and a very recent cancer survivor, I am learning to live with aging, missing organs and remaining body parts with a "new normal." Life is a challenge to be met and we are doing it, even if it is on a day-to-day basis!!
I've been to a ton of doctors, some think I have hEDS and some think I have Fibermialga. I want to go to someone to see if I have hEDS but the doctor I talked to said it didn't matter because they were treated the same way. But even if they are I still want to know. I told my boss I needed to go to the ER because my foot was hurting a lot and we stand for 10 hours at work everyday. He said "what if I told you no? That you couldn't go?" I almost quit that day. I just wish someone would believe me when I tell them all the stuff that's going on with me. But people just make me feel like I complain to much and that I'm exaggerating.
kai luca I have a friend who was diagnosed with fibromyalgia, and she’s been living with it for years. But recently, she and her daughters were all diagnosed with EDS. I wonder if those two disorders are commonly confused? It seems like they are because EDS is so difficult to diagnose.
The International Federation of Sport Climbing (IFSC) organizes paraclimbing competitions and world cups for disabled climbers and they made a category called "Limited range, power or stability" and it's very wide, it includes a lot of different disabilities and I know that there are a lot of EDS diagnosed climbers. I hope that in Paralimpics, now that climbing is an Olympic sport, they will still include this category.
This is making me think of a story I read a few years back about a blind dressage rider who wasn't allowed to compete in the Paralympics unless she agreed to wear a blindfold because she had light/shadow perception and that wasn't "blind enough."
That is to level the field for certain classifications. Is she has functional vision where it may benefit her while competing against others that have no functional vision at all. What other alternative would you suggest to make sure the competition is fair?
@@SlavinChris In that particular case her light/shadow perception would not be enough functional vision to help with the sport of dressage. Dressage riding is all about getting the horse to do the right movements at the right points in the ring, which for sighted riders are marked with little white lettered cards on the ground at the edges of the arena. Without enough functional vision to see and read those cards, it would be about knowing how far your horse travels at each gate and counting it off. I believe her concern was that they wanted the blindfold at all times on competition day, which she felt made handling horses in busier spaces outside of her competition time in the arena unsafe because she can normally tell by shadows that there's another horse passing close by.
EDS representation. Whoo Really appreciate how you included the struggles of being diagnosed. Been looking for answers since I was 14 and finally got some at 21. It's a slow process.
everyone who says "you're not disabled enough" , if faced with the same pain as you, would quickly change their minds and probably not even have the willpower to stand up and TRY to be active Heck i got a muscle injury once (VERY MILD ONE) and i had a lot of freaking pain angling my leg or putting my body weight onto my leg muscles and THAT was enough to make me extremely frustrated that i couldnt move like the rest of people- i cant imagine how it would be to live years with that since i was only injured for a month... That didnt like, show me how it would be like to be disabled but it showed me a TINY portion of the damage it does to your mind
Yep I agree with her there is a lot of 'not disabled enough' out there. I myself am Secondary Progressive Multiple Sclerosis and I can stand and walk for a few meters till the pain gets too much. I had to fight for 2 years to get a decent wheelchair to meet my needs. When I try to get help with things it's like sorry you don't have X we can't help you.
I have Primary Progressive MS same amount of mobility as you. Diagnosed 1 year ago, thought that would be it, understanding (I thought) equals management. Turns out there's just so much else to face. I'm still with a cobbled together chair (UK lock down hasn't helped) Getting to see videos like these and reading comments like yours are so valuable, not least to learn the language to discuss or even think things through. Thank you, we are not alone.
I totally get the whole ''not looking disabled enough''. I have chronic back pain due to a burst fracture of my L4 and L5 which almost left me paralysed. And because I broke both my heel bones, I can walk a maximum of 6 km or 1.5 hours during the span of a whole day, the rest of the time I can't walk more distance due to pain in my feet. So I often use a mobility scooter and I can also use my bike. But nobody would ever know I had a handicap unless I tell them.
I can empathized with parts of how she was treated by doctors. Why is it always that the reason for invisible illnesses is that the patient must be lying? Her diagnosis process with the doctors telling her that she's lying and the personal self doubt reminds me SO much of how it was for me to be diagnosed with Celiac Disease. It took me ten years to be diagnosed, and only after having a few times of being in so much pain after eating that it hurt to cry and other worrying symptoms.
I’m so glad I found your channel. I’m a part time wheelchair user depending on my level of pain. When this started, I was ashamed to use a chair. I had one for in the house, but wouldn’t use it in public. I felt I couldn’t use store motorized carts because they were for other people. I cut trips short, and found myself grasping for things to hold myself up. When I finally broke down to using a chair in public it was physically freeing, but mentally I just gave up a little of who I am. I figured I’m just an “old lady” now. Drab, boring, unable to do much. When I found your channel I realized first... I had the wrong size chair. Second, I don’t have to give up being me. I’m bright and colorful, and I don’t have to completely give up. You inspire me to find out what I can do. 💖
I am ECSTATIC that we found you! My son Christian is 19 yrs old and hes a congenital amputee and facing all kinds of emotional, mental issues. Being his mom I can only do so much to help him grow as a strong , confident, an all around perfectly abled young man. You are helping in more ways I can even mention......you are helping in ways that I cannot!!!! All I can do is express by words just how grateful I am......for YOU!!! Keep up all your awesome, life altering ways!!!! ♥️♥️♥️♥️♥️🇨🇦
Watching this made me cry. Two years ago I was diagnosed with myasthenia gravis. A year ago my doctors recommended I start using a wheelchair because I fall so often. Insurance said no, that it’s not a medical necessity for someone with MG. I miss being active, doing things with friends, feeling safe. It’s hard not to give up hope.
Whooo abby. And wheelchair racing i am doing wheelchair racing too and have heds too. Just today i bought my own sport wheelchair. Actuallu the fact that i will never be eligible for the paralympics is so sad. But abby and some others are really great i follow her for a long time on insta and it makes me feel great about the fact that we both never will get there but we still rock. Disabled does not mean you can’t rock
well, dont say never :o I know it must suck and i cant even comprehend how much, but hope it changes one day and you can compete and be aknowledged for your real hardships
Hi there! Another H-EDSer here! Really nice to see someone like me here on this channel :) even tho my body is way way way different than hers; For me EDS means over 40 dislocations every day, and lot's of internal problems, my spine is curved, twisted and as worn out as someones spine who is 85 (I was told, yay). Oh btw I am 24. But hey I enjoy life so so much, I can walk a little, so I try to go as far as I can, and a little further.. every day! And on days that I only can walk from bed to the toilet to puke etc,.. I enjoy visualising the world, I try to be creative with my hands, as far as they go. What I'm trying to say is: trying your hardest, doing your very very best does not always mean you can play sports or something.. so,, keep it up you, who is reading this ;) Oh Going in for my first surgery this tuesday,, getting two ostomy's. Will yall think of me? Ghehe ;)
I have undiagnosed heds and veds, orthotic dr knows I've got these yet can't diagnose me as he isn't that type of dr, as well as orthotpedic dr said they are pretty certain I've got these as well and have to be seen by a rheumotoligist to get properly diagnosed so for now I just can tell dr's I have jhs, yet most dr's I've met take that to mean it's heds, especially after they ask if I suffer dislocations and when I say yes they say ok it's heds then, I have a brain injury and in the accident damaged my spine, it's curving forwards at the top due to the damage and have shrunk a few inches in height, add in other health issues I've been told I have a strong heart of an old person due to 2 opposite heart conditions that usually only occur in elderly people even though I'm in my 20's, I'm like the girl in the video too disabled for able bodied sports yet not disabled enough for disability sports according to various sporting bodies, tried running but between the health issues and dislocating knee caps I stand no chance of being even in the top half of the runners, it's quite disheartening tbh
I'm getting chills to see this. I have hEDS, too diagnosed after 11 years. We're zebras and we're enough disabled to compete. They should learn how rough each day is for us.
I'd also add that often, simply walking & doing other "easy" daily activities can cause injuries! I have eds and have literally been injured just coughing!
@@livewellwitheds6885 totally lol, the other day I dislocated my finger closing a drawer 🙃 just a tiny little bit of pressure just totally screwed me up
Dear God!!! I needed to see this. I was diagnosed with MS six years ago and RA two years ago. I am not chair bound and actually my MS is doing better than the RA!! It SUCKS I’m not disabled enough to get disability because I’m not in a wheelchair but I suffer with debilitating pain. Even all my labs for inflammatory responses are usually in the panic value side of high (because I’m constantly having to push myself to get thru the day and then pay for it later). Thanks for posting this. I don’t feel as crazy now.
Art Franklin thanks art. I feel pretty lucky my MS is stable. But my RA gives me grief all the time which causes MS flare ups. It’s a delicate balance. I wish you the best of luck. I’m just trying to educate myself as much as possible before I progress so much that being wheelchair bound doesn’t send me spiraling out of control. Idk. This is all very new to me in a way.
Fellow sport chair and off-road rolator user, and hand cycle athlete here with a neuro disorder. Definitely keep highlighting all the different experiences of the ways we use a bunch of different tools depending on what we’re doing and how we feel.
as a fellow zebra, i am very curious how the track wheelchair affects her shoulders, elbows, and wrists. I was cringing thinking about how much pain that would cause me with hitting the wheels like that. my whole body is affected, but more towards the top of my body so maybe that is part of it.
as an edser, wheelchair user for 9 years,if shes like me the sheer constant in use exercise its keeping muscles strong and then theyre able to support joints better, from my waist down ive damage to my lower back and my lower half has worsened over the 9 years, but im really strong up top, thumbs slip out alot fingers sometimes but over time ive built my upper body realatively well. shes doing much more than me and that is whats helping to hold her in place
i recently went on vacation and i have severe fatigue and a tachycardia disorder, and i don’t have my own wheelchair - i don’t have a diagnosis yet so we aren’t sure if it’s gonna be a long term thing - so i borrowed my great grandmother’s for vacation, as she doesn’t use it often. i have 100% ability to walk and while we were at a restaurant a family saw me stand up to adjust my position in the chair, because i was sitting on something. they began to give me dirty looks and whisper to each other (loud enough for me to hear most of what they were saying). it really got to me that they thought i wasn’t disabled enough to be in a wheelchair, because if i would have walked further than a few feet that day, i probably would have passed out, therefore i needed the aid of a wheelchair. it kind of makes me happy to see more ambulatory wheelchair users :)
I am a zebra too! It’s very affirming and uplifting to even have your disease mentioned. Finding one less person I have to explain this to made me crack into a big giant smile
I can only imagine how tough it must be having EDS. I dislocated my knee quite badly several years ago and it happened about 3 times again in the 2 years I was waiting for surgery. I can say that those 2 years were horrible. Constant anxiety and nervousness on what people are doing around you because you don't want to get pushed or nudged in the wrong way, not to mention the pain and muscle weakness from all the trauma.
Quick correction. Zebra is used to describe people with rare conditions of which EDS is one of the most common. It comes from the common adage taught in medical school "when you hear hoof beats think horses not zebras". I have 2 rare conditions (CPS, EDS), mod TBI, and multiple SCI from trauma (concussions and partial transections). My highest injury is C3-C4 with cervical instability at C1-C5. Not all zebras have EDS. Even though I am considered by rehab to be a high functioning quad, because I can still use my legs (20 years rehab I have learned to use the elasticity and my hypermobility to be upright a bit), I am not disabled enough either. If I hadn't worked so hard, I would qualify.
Thanks for covering my illness! It made me straight up cry when you validated what we feel and go through in the beginning. I've had to hold off on watching this one because i knew that would happen. I can't tell you how much I appreciate this one, Richard!
I feel like there needs to be more awareness around ambulatory/part time wheelchair use. I mean, almost everything in the medical world needs more awareness... but; I have fibromyalgia which in my case is pretty severe. I mean, it's not a dangerous illness or anything, it's "just" muscle, joint and nerve pain, but in my case the muscle pain is so bad that I can't walk for more than maybe 100 meters at a time. So I have a wheelchair for when I need to go places. I've been judged by other people with fibromyalgia, where they said "i have fibromyalgia too and I don't need a wheelchair so why would you need one?" And someone with a different diagnose that said "why do you need a wheelchair for endometriosis and fibromyalgia? I have *****(I don't remember what she said she had🙈) and even I don't need a wheelchair)". I never said that endometriosis is a reason for why I need a wheelchair, I don't know why she put that in there😂 You can have the exact same diagnose and the exact same symptoms but still have a different experience. I get it that people who don't know anything about certain diagnoses get confused about why someone with that diagnose needs a wheelchair.. but just the fact that you can get judged by people in the chronic illness community, especially when they have the same diagnose, is just unbelievable tbhx) Sorry for the long comment, I just needed to get it out somewhere where there might be someone who understands😂😂
Hi Abby and Richard. I am a fan of both of your channels. I am a wheelchair track racer who qualifies for the Paralympics. I have a congenital disability which presents with symptoms similar to spina bifida. I totally agree that there are problems with the current paralympic classification systems. Trying to categorize disability is really hard. There is such a wide range. Even within the current system there are gaps. I fall in between classifications and have to compete against those with more ability than me. The paralympics has the hard job of pairing us with equally able athletes and not splitting us up so much we don't have competition. I have been in races at track meets with only three athletes because of classification. Abby, I wish you could compete! We need more people like you in our world! I'm so glad you continue to race even though you are not classified. Richard, I think there should be change. Those of us within the system kind of hate it. Unfortunately, as sad as it is I don't see change coming anytime soon. If you want a different look at the struggle of qualifying for the Paralympics, check out this video: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-Y5F_ha7d-PI.html. Those who are honest are punished for those who are dishonest.
I too have a partially ambulatory disability, It isn't about "can I walk"? It much more about "how far can I walk"? Not very far at all. My disability robs me of the energy to do "normal life". Whatever the hell normal is right? A LOT of what you discussed resonated well with me. Being partially ambulatory is both a blessing and a curse. It's handy as hell when compared to zero ambulatory but can bend people's brains when they see me stand up from my powered wheelchair to stretch after sitting in my chair for eight hours or more. Thank you for sharing your story Amy! And keep rockin it Richard!
I've watched all your episodes but this one is the best I've seen so far. It really touched my heart. I got rid of my wheelchair 5 years ago because I was able to walk again. But I have a lot of pain and low mobility. I've taken the step ordering a new one. A custom with smartdrive and I'm getting it in a couple of weeks. It's a really hard process accepting that my life is going to be higher quality in the chair, when I actually can walk. But like you said in some other videos, it causes so much pain and isn't worth it. Thank you for this video ❤️
Plebku if you mean me... i had spinal myelitis. Hit T1 Right side movement had a good return. Maybe 85%. Left is hip initiation and LOTS of extension. Some spasms. No hot/cold/ wet sensation.
I have hEDS & a spinal cord injury!! From a cliff accident. I'm a libra too so I feel balanced & represented haha this is great for such a niche person like me; thank you!! You do so much. I admire it.
Thank you so much. Late diagnosed HEDS at 33 yo, now 39 yo, i finally have my first wheelchair. It's amazing i can finally move without be just focused to try to avoid the pain or not scream because of it. I can finally be present in the moment and take a look around me and not where my feets goes. I had the chance to live in the Nederland and here i have absolutely nothing to pay for my wheelchair. Because of my HEDS i live in poverty since ever, despite working since my 17 years-old. And the idea that a lot of us are denied proper care all around the world made my blood boil of angriness and sadness. The idea that you have to fight to have access to mobility aid that allow to be a member of society is so unfair. Some goes for genetic testing. So unfair that you have to fight to long to have access to it. Thank both of you to bring awareness on disability. And thank you so much Wheels2Walking for your educational video. It really helped me to embrace my new freedom with pride and gratefullness. Now i gonna go for a "roll" enjoy the sun and read a book and wander in my city, things that i couldn 't do before having my wheelchair.
Hi Richard and Abby, thank you for making this video! I have recently been diagnosed with hEDS and fibromyalgia, its taken me 16 years to get a diagnosis but I am glad to have it as it explains why my body is so wonky! The part where you guys talk about using a wheelchair hit the nail on the head for me, I always thought of it (for myself) as giving up, but now I am able to articulate to people how using the wheelchair is 10000% better for me due to pain, fatigue and dislocations/sublaxations and other general wonkiness. great to know I have another Hedser to follow now :) thanks again for making the video :)
I have EDS, a TBI from a brain tumor, autonomic neuropathy, dysautonomia, gastroperisis asthma and balance issues and I STILL will get flack for being in a wheelchair with "working" legs! I have even gotten flack when I used to use my walker! Sometimes I think people just need someone to pick on and they go for the easiest target. Over time I learned that that says more about them than it does me.
I am so happy that I found this video. The way you set out to educate other people about disability is amazing. Not every disabled person is fully wheelchair bound or can't walk, it really sets a good example for others to learn from. I may be fine but I know a few people who have struggled even getting a diagnosis or even a good pain management system because doctors didn't believe them. More education is needed for everyone and your video is amazing for this. Keep up the awesome work :D I am subscribing now so I can keep watching more x
hehe, i love your comment "fat boy wheezing" .. due to my asthma I wheeze almost thinking about doing anything and i say stuff like that about myself :) thanks for making me smile
I'm so glad you featured someone with EDS! I have hypermobile EDS too and I'm an ambulatory crutch/wheelchair user. My health and my mobility vary a lot I constantly struggle with feeling bad for everything I /can/ do physically - like when my neighbours catch me walking I feel bad thinking they must think i don't really need the wheelchair.. but I do! I was stuck in bed/in a powerchair and extremely weak last year but I used this lockdown to get myself a manual chair and get strong enough to push it. It still causes me pain and dislocations but I am so proud of myself and feel much more able-bodied pushing my chair! I want to get a handcycle as that looks much easier than regular pushing or how Abby pushes the racing chair. Thank you for the inspiration!!
Ive been a fan of your channel for a while and it helped me transition to being a part time wheelchair user. I have hEDS and it is so wonderful and happy to see how great you handled this topic! It is so great to see representation done well and I am really glad you had someone with EDS on your channel. Made me whole day!
Awesome! Richard, I've commented before (talking about your "dude" podcasts lol) and can't tell you how much I appreciate this video. It's definitely one of your top 5 in my book. I too have hEDS, CRPS, and a metabolic bone disease plus others. These diagnoses are so misunderstood and more common than even doctors realize. Abby's experience mirrors mine in many ways, and even though it took 35 years to get diagnosed (20+ years ago), I still run into barriers. I finally committed to nearly full time wheelchair use a year ago, and you've been a huge part of my journey. Thanks to you and Abby ever so much for this video. I can't wait to share it with others.
I loved hearing her story as someone who is still trying to get diagnosed I found it interesting. I also hate getting the you’re not disabled enough for a wheelchair or for handicap parking. Even though I can’t walk or stand for long periods of time and I’m constantly subluxing or dislocating my knees and hips.
This was super awesome and informative. I love that if I ever needed a wheelchair, there is a community our there to encourage. I love watching you channel regardless if i ever need the encouragement as a wheelchair user or not. I'm encouraged in my day to day life by this channel as an able bodied person. Keep it up!!!
I also have EDS! I'm in a weird place with it right now where I can't do any 'normal' sports but I don't use a wheelchair yet (I use a mix of a stick, crutches and soon a walker) so I can't get involved in disability sports. I really miss being as active as I was as a child where I did gymnastics for years until I was too broken to carry on but at that point we didn't know why. Thank you so much for doing this video, it was really interesting
If you're interested/able to take part in wheelchair basketball, a lot of clubs also take non-wheelchair users, you're just worth a different number of points!
This made me smile I love watching you. I have eds and it took me 3 years to get diagnosed. It's still hard now. Only a couple of people know that I use a chair when I am on a bad day. Glad you are making this condition known. So thanks. I have bad knees and my hypomobity is not good my knee goes all the time when I walk. I have chronic pain in all my body. So thank you for sharing this.
Thanks for the great video! I'm a T8 incomplete. Where I live (Austria) they use the term "incomplete" for not knowing what is causing paralysis and if there is even a reason for it. This means that whenever it comes to applying for funding or support, it will be rejected. It's not even about not being disabled enough, but about the question of being disabled at all.
I have hEDS too! I'm so happy to see this video! I was diagnosed a few months ago after literal years of begging doctors for answers. My hypermobile joints were ignored because I was a ballerina and hypermobility to certain extent is almost a necessity for that sport. I blamed all the joint pain on the fact that standing on your toes and going to six or eight hour practices isn't really what the body is designed for. My other health problems were blamed on anxiety and the random bouts of fatigue on depression. It wasn't until I conquered my mental health issues that I was taken seriously after I started having bizarre nerve issues and had some of my first full dislocations. I hadn't heard of joint hypermobility syndrome or EDS until a youtuber mentioned it and I looked it up. It described me perfectly and I brought it to my doctor. Thankfully I have a wonderful doctor who took me seriously. I feel like I'm at a point where I can reclaim my life with the support I need! People like Abby encourage me so much.
I'm so glad to see this video because I'm not paralyzed but I do have a movement disorder that started to progress when I was 16 and people wouldn't believe me and then when I was 19 I was finally diagnosed with Sialidosis type 1 and I had to start using a walker and then right after college my progression was so bad I was in a wheelchair and have been ever since. And people get very confused when they see me.
I love that you are adding more chair disabilities to things. I am a most time user, we are still working on a diagnosis. My life was hell until I bought a stock chair and a week later i got to go to the mall for the first time in years because I couldnt walk around it before. I slowly worked up to a 3rd hand, well used rigid chair. and its still making my life livable now, even though i worry about it breaking.
I actually started crying when I saw this video because I have EDS Type 3, or H-EDS as she says, and it is extremely hard to actually get diagnosed with it because most doctors either won't take me seriously because I am a plus size person or because since the genetic coding is not mapped for this type of EDS you can't get a genetic test for it. It is all based on examination and it is so hard for a doctor to take it seriously. I had to beg for my wheelchair after months of walking getting more and more painful. My aunt was diagnosed years ago but refused to let me see the doctor so I am not fighting to just live now. Thank you for bringing light to people with this disorder!!!!
I would love to see you work with someone who has MS. It's difficult with MS to determine when you need certain equipment and I have seen people who should use a walker of a wheelchair use a cane or those hiking poles and they fall down a lot because MS isn't a clear path and it's different for everyone. My is mainly in my spinal cord so I don't get brain fog but I have big problems with mobility.
I always wondered how the racing chairs work and how people sit in them. Great that you got to experience that! EDS is such a horrible condition, it made me feel quite sick when she described it. Really horrible that it takes so long to get diagnosed and to be believed. Good for Abby that she is not giving up, and hopefully she will= be able to enjoy her sports for long time to come.
I’ve just come across this video - thank you for posting. I’m sorry these conditions are not “disabled enough” - I hope that a class will be created in time given the increasing numbers of potential Paralympians who don’t meet the current disability standards but are clearly disabled, as in Abby’s case (it is clear she would not be able to run safely). Best wishes to both of you.
Wow, I'm glad to hear that you got relatively early diagnosed! I mean I had a journey of art least 30 years .... I was in pain and had a lot of different physical problems and physical abuse by doctors ... since my early youth ... Now 50 years old and diagnosed June 2020, also with hEDS.
Thank you for a great video. To show that people are maybe 90 % wheelchair users, but can walk foe a small distance, maybe make it easier to understand. I would be happy if you make more videos like that. I been in a wheelchair for about 10 years. I wish you bouth a great week. Best wishes from Jan in Norway
hEDS guy here. I wasn’t diagnosed until I was 28 (40 now) and what Abby said about people thinking you’re faking is sadly very true. Growing up in the 80s and 90s EDS wasn’t really a thing, you were just lazy or weak and making it all up. I’m so happy that people are starting to recognise how complex a condition it is and how it affects us. Gives me some hope that people bring diagnosed now won’t have to put up with the crap I had to.
Thank you for educating me and other about hEDS and being so honest about being in that murky area of disabled-not-disabled. I have my own hidden disabilities and learning about others helps me feel less alone and frustrated.
I dislocated my Hip in 2019 since then ive been in constant pain it gets too painful to walk and i used a crutch to get around but over the 2 years the pains gotten too bad to where ive had to get a wheelchair to get some independence back as my GP wouldn't get me one under the NHS. My current Wheelchair isn't fitted to me its just generic but its so freeing compaired to what i had before. most days i couldnt get out of bed without help. ive been critisied being told im faking coz my hip still seriously hurts after my dislocation that happened 2 years ago that never healed. I hope HEDS can be allowed into the Paralympics soon
Love the channel, great video with Abby. Need to see more positive role models for EDS and other disabilities. I have EDS classical type, basically all the hypermobility stuff plus skin badly affected & CRPS. Always amuses me that I can dislocate my knee/hip/shoulder when at family events / with friends & put it back into place without the people around me ever knowing. There's a famous 'Little Britain' comedy show with Matt Lucas and David Walliams, where wheelchair user gets up and walks when his friend that pushes wheelchair is distracted.
Took 35yrs for me to get diagnosed with EDS in uk, lost count of being told pain was in my head / exaggerated, turned out I had all the classic symptoms but no doctor thought all the daily dislocations of various joints were connected! My wheelchair set me free, gave me independence, my spinal injury friends were an inspiration when I needed it most, taught me to dance in my chair when I got married, to not be defined by my disability.
I use a wheelchair when I'm out of the house because I have POTS and I've been told that I have no reason to be in the chair or that I'm not disabled. I really don't feel like I fit in this community and it's so disheartening.
I like these videos with you interviewing other people with their disabilities and how they get through the problems and triumphs. I use a chair because of a bad back ( can't stay standing or walking because of pain) and I have P.O.T.S. and just feel safer having something to help me when I get dizzy (P.O.T.S. is when your blood pressure drops and your heart rate increases. You can pass out, get dizzy, weak and have vertigo) if not for my chair I would be bound to the couch or bed. I broke my hip then my leg (same side) and that is how I got my standard hospital chair or I don't know what I would do to convince a doctor or insurance that I need one. Thanks for doing what you do 😊
Way to go, Abby! 👏👏👏👏👏👏In a way, those of us who have fibromyalgia, go through some similar circumstances. There are no genetic markers or blood test to show what we have. A lot of people don’t wanna believe there’s such a thing. It also takes some time for some sufferers to get a diagnosis. Keep up the great work, Richard. It’s great that you continue to Spotlight the different types of disabilities.
Really cool to see a Zebra on the channel! Thanks to Richard for really getting some diversity on this platform! Really has me thinking about if I might enjoy racing. It makes a lot of sense for my body. I’m wondering if there’s anything we can do as a community to push back at the paralympic committee and create some more pressure and advocacy. It seems to me like, if you’re racing in a racing chair, even if you were totally able bodied, it’s hard to see what advantage you’d have? like, why even restrict access to it?
I am also a disabled athlete who is completely unclassifiable, since the rule change in 2012. I was put forward to compete at a world cup for wheelchair fencing for GBR only to be told my disability doesn't count and I would no longer be on a paralympic pathway. There are many athletes in the same situation across multiple sports, so thank you for bringing this issue up as it doesn't get the attention it deserves. The worst bit is that because you can't be classified a lot of national sporting bodies exclude you from grassroots levels.
Another impressive video, Richard. I look forward to your posts and enjoy them. Excellent educational work. I think you have found your niche. Abby, it's great to meet you. Just keep doin' you, girl. Richard, you asked for suggestions of other conditions that might cause someone to need a wheelchair, so I have some for you - Young Onset Parkinson's Disease (YOPD). They get "You can't have PD, you're too young". And there are 5 or 6 other types of Parkinsonism as well, one of which I have and which is one of the 40% of Parkinsonisms that do not ever exhibit tremor as a major symptom (or not until very late in the disease's progression). Don't ask me which one of them I have, because after SIX years and mucho testing and misery, I still do not have a firm diagnosis. And I still get [told by normals]"you can't have PD, you don't have a tremor." Oh, the ignorance. I realize I'm not your target audience. I'm 75 years old and I may not live long enough to get a definite diagnosis (because of comorbidities), but I sure know what you and Abby and others go through with people doubting and challenging you as to whether or not you're disabled. Please have a look at Parkinson's, you might be surprised how many of us are out here trying hard to appear "normal" and struggling with cruel and judgmental comments, just like you do.
I am so so happy to see a video about hEDS and Wheelchair use! Currently going though the process of getting my first chair. Honestly a terrifying step to take, and I guess i'm still in "denial" about it all. But this video has really helped and touched me as I also have hEDS, this is going to help me explain my situation, and why I'll be using a wheelchair some days better to others! Thanks a bunch for this, and keep being awesome!
I also have hEDS, to get diagnosed I literally had to dislocate my hips, knees, and ankles in front of the doctor to be believed. Then they did xrays and MRI which showed that my joints were very damaged. I was 30 at diagnosis. I recently finally got approved for wheelchair by my doctor.
I had a gut feeling when I saw the thumbnail/title that she had EDS. I myself have cEDS and use a cane or forearm crutches when I’m struggling. It’s like being caught between two worlds. Too disabled to function like health people but viewed as not quite disabled enough to be included in things meant for the disabled population. Not only is it a spectrum but the impact of the disorder can vary greatly. Sometimes I can live a few consecutive days without much pain or problems and then the next week I’m unable to do anything without help. So glad I found your channel recently!
hi it's me from your last vid, remember me? i love hearing other peoples storys, and that sports wheelchair is cool. i thought you were going to flip over at the start
Abby, you are so amazing and i truly hope hEDS, marfans and other connective tissue disorders become recognized for the paralympics!! xoxo a fellow zebra
Just discovered your channel. I was in a skating accident that destroyed my left leg. I'm so grateful I discovered handcycling. Before I got hurt I did road races able-bodied and was always blown away by the wheelchair racers just hammering away. My goal is to be as active as possible in adaptive sports. I was also left with mild CRPS. If I recover great, if I don't, fine. I know there are sports out there I can still do, and I'm glad I found your channel so I could learn more about them. A friend of mine has EDS and I'll tell her about Abby's channel.
I feel your pain hun 17 now, ive been having issues since I was a baby and still no doctor can figure out whats wrong with my legs, as you did, its a part of my life and Its just how it is..im glad to see someone get a actual doctor to tell them what in the world is wrong
As someone who uses a chair due to a lack of function of the vestibular system (nothing musculoskeletal) I have the same “issue”, I’d love to have a decent effort at a racing chair... but there’s no para classification for me...
partly funding, chairs aren’t cheap, partly because I know that I would benefit more from being able to meet train and compete with people than just going to a track on my own. That’s a personality thing rather than anything else.
I have Classical EDS and am constantly told I'm not disabled enough. In the UK wheelchairs are funded/ partially funded by the NHS but I'm not eligible because I'm not disabled enough, so I'm fundraising for my own chair so I can get out the house without constantly being in agony
Reading all these comments is so inspiring. I don't have physical disabilities that you can see, but I have a ton of mental and internal disabilities. (I think the number is around 10 or so?) I try and tell myself every single day how proud I am of myself for what I'm doing considering all of the shit that's wrong with my body. I've actually started trying to make my bed thanks to your depression video. Kinda feels nice. Anyway. Love your educational videos. Keep up the good work of breaking down disabled barriers. :)
I wasn’t diagnosed with Asperger’s syndrome (Now High Functioning Autism/Autism Spectrum Disorder) until I was four years or so into college. I’m not in a wheelchair but having a neurological disorder has its own challenges. It took a decade to get the assistance I needed.
Nice to see you out there racing! I used to wheelchair race back in 1990-1993. Racing chairs have changed a lot, as well as the gloves. Great sport though. I do the hand-cycle riding/racing now. Keep moving!
I completely understand !!! i am a part time wheelchair user, i have hyper mobile joints and mild cp and when i walk you can see a slight different gait, sometimes a little limp, and a touch of ''uncoordinated movments'' compared to the norm, but because its mild people even many many social workers have said, '' you dont need that wheelchair'' you are fine, yu walk fine, never mind that i fatiuge and balance gets worse through the day if i walk all day, greatly compromising my independence, and abilities,.... i actually got rid of social services, i am completely on my own as i spent 20 years oin those systems and none of them helped me, they either saw me as incapable, and incompetent, no matter how confident and assertive i put myself out to them and others, or i was regularly ridiculed for my use of a wheelchair, and them being critical and doubting my so called disabilities because i can walk, i can shoot hoops, i can ride a bike ect. but i cant walk 2 miles to the store and 2 miles bacvck with groceries, i cant walk around all day long, plus my wheels enable me to keep up and be at the same pace and fater then non disableds, go all day fully independently and safely... that being said, when i go for jobs and or training, i dont take my wjeels because unfortunately the chair has hindered mne big time in jobs because theyare so afraid of liability, me getting hurt, every time i got toa job or training interview without it,i got accepted, ALMOST EVERY TIME I HAD MY WHEELS, I WAS DENIED THE JOB OR TRAINING OPPORTUNITY, AND ALSO HAVE FREQUENTLY BEEN ASKED, 'ARE YOU RELIABLE'', even though every job i had showed up every, single, day, on time, gave no less than 110 percent, was always praised about how well i did my work / duties... also been questioned frequently HOW DO YOU GET UP AND DOWN, HOW CAN YOU REACH OR SIT IN OUR CHAIRS ECT... I EXPLAIN HOW ND EVEN DEMONSTRATE THAT ITS NO PROBLEM, but still got turned down every time when i was in my whjeelchair, and again regulrarly asked and doubted about my ability to move function safely at the job or training site.
That's a fantastic idea to interview people with different disabilities on how they do sports, how they cope with challenges, please do more of it. It's very inspiring. Perhaps interviews with people with disabilities who are active professionally or in business would be great, too.
