What is Ehlers Danlos Syndrome & Why Do I Use A Wheelchair?
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- Опубликовано: 25 авг 2024
- Thank you all so much for watching, ilu ❤❤❤
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Aaron Ansuini
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Dang. That very uncomfortable and painful. I just finish a college anatomy class and we talked about joint and muscle function basically half the semester. I can see your using your muscles a lot by your knees and is fatiguing very quickly. And your ankles are are completely collapse.😱 Everyone's lower body needs to be aligned and in place to bare all their own weight. Thank you for educating the public about this and me!👍🏽
Thank you for sharing your knowledge and using it to elaborate on some of the points I made about my legs!! I appreciate it!
This disorder often is proceeded by years of trying to find the right doctor who is familiar with the disorder. Medical school often only touches briefly on the condition, and it is only recently that those in this field are getting better information on presentation and development and the impact this has on patients because the disorder is rare. The emblem of a zebra associated with Ehlers Danslo Syndrome goes back to a statement that is pounded into the minds ofmedical students that disorders present. When you hear the sounds of hooves, think horses, not zebras, because 9/10 the problem is generic, and the students should anticipate seeing horses rather than zebras, which represents rare problems.
lamb pretendig to be a pillow, is a mood^^
Omg it took me a while to realize that was a cat and not a pillow 😆
Lamb is the cutest & softest pillow cat!
You noticed too
I thought it was a heart pillow!!!
I really don't understand where the idea that being in a wheelchair = more sympathy/attention. My friends who have/do need wheelchairs have all expressed to me how exasperated people get with them taking longer to do things or how people ignore or cut in front of them constantly or talk to the person they're with rather than them. You shouldn't have had to but thank you for making this video. It was very educational and enlightening about the struggles of having EDS and using a wheelchair.
I used an electric cart at a grocery store for the first time since my diagnoses (I have hEDS & Fibromyalgia). I felt like I was in the way the whole time, and people seemed to stare at me. I'm a woman in my early 30's and I'm not overweight in the least, so I think they were thinking I was just using it for giggles. The being in the way was the worst part. Because I'm light, the scooter didn't register a person being on board, which triggered the safety feature and made it shut off. So then, I was not only in the way, but unable to move it without first standing up on the weight sensor.
Dangeresque Mustachio That’s terrible! I don’t understand why motor carts are designed that way... it’s almost as if people only imagine heavy-set people need mobility aids, jfc... Disability doesn’t have a “look” and the sooner people understand that, the better...
I know 100% about how people always get exasperated with people using mobility aids, I often escorted my mother around when we went grocery shopping and by the time she hit her mid to late 40’s, she wasn’t able to move around as well. By the time I was in high school, she was using a walker most of the time and always made use of the motor carts... it was frustrating seeing people give my mom judging looks. A lot of times, they were looks of disgust. Never a good time...
I, myself, find it increasingly difficult to get around without any pain. I’m constantly always dealing with pain in some form, usually in my ankles, I just never talk about it so no one ever considers that I’m in pain pretty much every waking moment. Trying to come to terms with that and seek medical care, but I’m afraid a doctor’s going to take one look at me and tell me if I just lost weight, I wouldn’t have problems. Well, gee, thanks doc, I never thought about that!
@@kazeboiii I hate that people tell my heavier chronic pain friends that they need to lose weight and it will help. Of course it would help, but how much really? Probably not al that much, because I'm 130lbs and I'm in pain every waking moment of my life. I don't mean to discourage anyone from losing weight, it just really makes me angry. It's like they tell me if I just exercised more. For one thing, I am doing PT and exercise every day. For another, I want to scream at them WHY DON'T YOU TRY WORKING OUT IN THIS MUCH PAIN!!! lol, I don't, but I want to. I'm really sorry to hear about your pain, and I hope you do get some kind of help for it when you are ready. It must be really so hard for you having seen your mom go through all that stuff only to have to worry about it happening to you now. I can't imagine. :( My mom had lots of back pain but she was fully mobile. I am really scared myself I'm going to lose mobility if I don't get control of this.... right now my shoulder, elbow, and wrist are all out of place and I feel like I'm LOSING IT. Did your mom have EDS? Do you maybe?
Dangeresque Mustachio My mom has had a lot of compounding issues effecting her health. She was a chain smoker (smoking on average about 27 cigarettes a day) at the height of her addiction, though she only smokes her e-cig now-whether that’s better or not, jury’s still out. She was diagnosed with chronic bronchitis in January of 2000, I had spent the new year in the hospital with her unsure what was happening for most of it. I was 11, about to turn 12, and it was pretty overwhelming. She also had a heart condition that eventually led to a stroke a few years back, though I don’t recall the specifics (she survived, but she lives in a nursing home now with round the clock care). Her joint issues were caused by arthritis; her shoulders and ankles were constantly inflamed.
I’m pretty confident I don’t have EDS, but my ankles are constantly inflamed much like my mom’s. My heel bones, especially my right one, are super sensitive-not sure what causes that. Bone spurs??? I was diagnosed with tendonitis in my left shoulder when I pulled it pretty bad moving a couple years ago. Who knows? I definitely should be following up on these things with a doctor.
Thank you for your kind words! I hope things go well with you and your pain becomes more manageable. One thing life has taught me from a young age, people can be terrible... but for every terrible person, there’s at least one kind person.
@@HeyJudie I use a sack of potatoes or big bag of dog food or huge thing of rice to help add weight on scooter-ish type buggy. I use bricks on the riding lawnmower also. 🛵🛒🥔😃
I feel so understood and seen by you. I'm a disabled trans man as well. I have chronic pain, mobility issues, and teeth problems, so I use a cane or a walker every day, as well as plastic straws every time I drink.
Thank you for doing this work. I'm so glad that your channel exists.
My hip: hears the word subluxed
My hip: hey hey guess what I’m gonna do
I'm in the US and my wife is disabled, also occasionally requiring mobility aids. My brother is currently on a trip in Japan. He has sent me so many pictures of how much more accessible LITERALLY everything is in Japan. Elevator buttons are placed horizontally parallel to the railing, versus vertically parallel to the door. Every single bathroom has an accessible urinal, not just a stall.
It's incredible.
The future is accesible, my friends.
lamb in the back being a cute round boi 💖💖💖
dude this sounds exhausting to deal with holy shit im proud of u
also "don't be mean. just, stop .. please" is a big mood sjsksjsk
I use a wheelchair because I have a heart problem, and I can't walk very far without getting exhausted. It's annoying when people just ignore you when in a chair. It's like you don't exist. This video was amazing and very helpful on keeping up my confidence.
I get a lot of “ugh, I have to wait for /the wheelchair/“ or “dude! Hold the door for /the wheelchair/“ but, on the plus side, when I am in my chair I pass better (ftm) so that’s pretty cool. People at school are confused that I’m in and out of my chair. I get questions about what’s wrong with me all the time. Anyway, sorry for the ramble. Thanks for sharing, awareness like this helps so much and I feel less alone. -Nico
I also pass better since becoming a wheelchair user
Oliver Carnazzo it’s so weird to me, like, how is my wheelchair making me pass as male in anything I wear when even my most masculine outfit can’t if I’m walking? It’s just something I’m so genuinely curious about. -Nico
@@lilywilliams5141 I've hypothesized that:
(1) it makes me look younger
(2) my height doesn't give me away
(3) people generally try to avoid looking at disabled people (or the opposite--they stare), and so all they can get it a quick glance which isn't enough time to "figure out" my gender
(4) their mental categories for gendered characteristics don't take into account how to perceive a disabled body
And (5) they may just be too distracted by my wheelchair to actually pay attention to my gender
Oliver Carnazzo that makes so much sense! Thanks, it’s been something that I’ve wondered for a while now!!!!
I love how you pronounce t's and s's. Your enunciation in general is fantastic.
Thank you for this video Aaron. It made me realize that I do a lot of judgemental thinking without even realizing it, especially with people taking the elevator when they don't "look" like they need it or seeing someone sit down in the disabled seat on the train who seems like they don't need it. Next time I will remember what you said and be conscious of that. Thank you for helping us all to be more compassionate.
THIS!
"it's assigned seat" man that's an amazing and hilarious description, I'm going to have to start using that!
I am just finshing up my first year of Social Care studies (3 years left) and even know i am not physically disabled (i am trans and have dyslexic and adhd) watching your educational videos about these also help get an insight to the area of disability for me!
Thanks Aaron for educating me and others in a format that's readily consumed. I wish you didn't have to and that we all lived in a more accepting place. Much love.
On the point of able-bodied people being obsessed with "catching" someone faking their disability, not only is there no benefit to faking a disability, but what does said able-bodied person stand to gain from "catching" someone?
Cae Herlin It’s gross. I don’t understand this “brownie points” system they use. What do you get with those points? Bragging rights to inflate your ego? 🤷♂️
Kimberly Williamson I’m pretty sure you’re right and it just makes it even more gross, y’know? Humans, I guess 🤦♂️ lol
Good educational video! and i love the pillows in the background
When you stand from your wheelchair and someone reacts ridiculously, you could exclaim "it's a miracle!" ;P
"It's not in it's assigned seats", I'm not diagnosed but it's highly likely I have a hyper mobility spectrum or connective tissue disorder and that sentence perfectly describes my ankles and wrists...
my qpp has EDS and this video was interesting to watch and is helping me understand a bit better what they're dealing with.
Yes please do more videos about EDS and being an ambulatory wheelchair user. I love learning and you are a great teacher and very articulate
I’m glad you feel comfortable enough to use your platform to educate about something so personal and, I could only imagine, difficult. Of course you’re going to do what you need to keep yourself healthy and safe, but fuck those people who think you don’t have a reason.
Off topic, but I'm so happy to see your channel doing so well. I subscribed when you had a little over 1k subs. As a fellow disabled tran, I can't explain how much I appreciate your content.
This means so, so much to me ❤️❤️❤️❤️❤️❤️❤️❤️
Thank you so much for being there with me from the beginning, I truly appreciate you ❤️
This reeeaally helped me accept myself and my needs. Thank you Aaron.
Wow, great video!! Thank you so much for sharing. I live by this motto, Be the change you want to see in the world. Warrior on, Aaron!!
Such a good video man yes !!
I use a cane and a wheelchair because of my invisible disabilities and you said so many on point things throughout this thing! I always love seeing people talk about invisible/slightly visible disabilities. The comparison between lifting weights and us walking was so great, I'll try to remember that. (really appreciate you brought up that we shouldnt have to explain it as often as we do thought)
Love your channel and how well your able to articulate things, much love 🙌💙
I appreciate that you brought trust into the picture. I myself am not physically disabled, I have dyslexia though and for years no one trusted me on the fact that reading was extremely difficult. Instead they looked at my grades and decided for me that I was lying. Trust is everything. The video was helpful too! I learn so much from people like you who are willing to put themselves out into the world.
Thank you for making this video. My doctor and I are tryong to figure out what joint and tissue disability I may have as i am suplocing (sorry i dont know how to spell it) and dislocating like crazy lately. Even if I don't have EDS this video will help me describe my joint problom and the feeling. It would be really great if you make more videos on this topic as i would be interested in seeing what its like and how you help yourself when things go wrong. But of course its up to you as it is a personal topic.
Thank you for making this video, it was very informative. :) I can't understand why people would think people are faking a disability after doing something as simple as standing up from a wheelchair. A couple examples. 1) My grandmother had a really bad fall over the summer and broke her hip. She had to use a walker for a while after she was discharged from hospital but still uses a cane to this day. If she's around the house or going to the doctor she doesn't use it though, only if she's doing a lot of walking. Also 2) I got out of the hospital a week ago and my bunkmate broke her hip as well. She also used a walker but went without it for small trips from room to room. I'm sorry you have to go through this, sending lots of love over the Interweb. ❤
*applause* THANK YOU. Doing this explanation constantly is exhausting and my conditions are milder than your own but oh my goodness the constant ablism. Literally had an appointment with my doctor today and the appointment room was the only one in the building that had three steps up to get to it and she just said "take your time" and I felt like my wrists were going to snap because I was trying to support my legs. I feel the point of "if I'm not in a chair I will likely need more assistance" is one that needs air time.
Hey, thank you for this video! I knew you had EDS, but I had no idea what it was or what it does. I appreciate you being so open about your disabilities dude 🙂
Yvie Oddly from the newest season of RuPauls's Drag Race has EDS and it was the first time i saw/heard someone talk about it. Im sorry its so bad for you and hope they can figure out more solutions to make your life easier and that more people can understand what its like to have this type of complex disability. Thanks for sharing!
I had no idea she had it!
Yeah, that moment was when I realized, yeah maybe being able to sublux my hip on purpose isn't normal... My dad can do it to, and his brother and his son all can do weird joint stuff too. It takes so long to get diagnosed in my province, so I'm not sure what type I have, but I meet most of the criteria for the hypermobile type. There are a lot of different things involved, including digestive/GI issues, allergies, heart issues, and many different things that make it hard to diagnose.
*hugs* I am with you here - using my wheelchair is my most profound act of self-care. I have degenerative disk disease in my cervical and lumbar spine and spinal instability from EDS, in addition to the knee/ankle/shoulder problems. I really thought that people would be rude to me when they saw me standing and getting my wheelchair out of my car on ramps, but honestly - people have mostly been really kind, and helpful to me, and for that I am grateful. I am glad that you are doing what you can to take care of yourself. It's always a balancing act with EDS - to balance working the muscles so that they don't get weaker, but also making sure to not increase the amount of damage to the joints that is going on. Its tough!
As an EDS zebra it's great to hear someone explain it all so well. Explaining is exhausting...where do you start. Thank you for sharing this x
As someone with EDS, thank you. I have memory problems and find it difficult to explain everything about EDS, so this video is helpful for times when everything is jumbled but people seem to /need/ an explanation of why I'm in an electric cart at stores. "I can't walk long distances." really just isn't enough for some people. I feel like I need to validate myself and it sucks.
I have EDS too, as well as POTS so I can't stand very long and need the elevator and such. I can't tell you how many glares, mumbles, and confrontations I have had over people being ignorant because I "look healthy". I've heard some countries are using pins (and special handicap parking tags) to identify yourself in public as having an invisible illness so people aren't absolute jerks to you. It's sad we are to this point, but people like you spreading awareness are what will help people to understand and be less likely to jump on people that "don't look sick" on the outside
I didn’t even get into POTS in this video for the sake of time and fearing losing the attention of my viewers/confusing them with the depth of my condition, but dear lord yes. Even adapted showers: “why do you need that?” .......because I literally pass out in the shower, idk what to tell you, there is literally no visual indication but it’s there
Thank you so much for this! I feel so seen and heard. I've also been an ambulatory wheelchair user on-and-off my entire life due to my extremely rare disability called Maffucci syndrome. I was diagnosed with hEDS just 5 months ago. Finding your channel makes me feel seen 💗
Perfect timing Aaron !! There are so many people being accused of "faking", being Disabled because someone doesn't think they fit their idea of being Disabled.
Some Children can be horrible to others. 😕
I'm so glad that you have put your body first & started using a wheelchair. ❤❤❤❤
No one should have to prove their need for a mobility aid.
Wow! Your analogies are on point! And you put it into perspectives that I can better understand about myself, thank you!! I have hEDS, Cranialcervical Instability, Mast Cell Activation Syndrome, PoTS AND I’m 26 weeks pregnant at 38 years old. Needless to say when I’m out and about using my mobility aids including my neck brace and/or my cane or walker with a pregnancy support belt on, along with a knee brace in my Crocs…. I get a lot of strange stares and hush whispering. It’s so bad here in Southern Orange County, California where imagine and perfection is everything to these people who live in their own narcissistic world.🙄
Having hEDS and being pregnant with the increased hormone Relaxin has only made my instability worse and the flare ups the most extreme I’ve ever experienced before. Thank you so much for spending the time to help spread awareness! You’re awesome!!
Thanks for sharing Aaron! I have hEDS and I have a hard time explaining why a wheelchair is better than other mobility aids. I really love the way you said it and I will be using that explanation in the future. I am also on the autism spectrum and have sensory processing issues, so not only do I have several out of place joints at any given time, but I am hyper aware of said misalignment. I have a crappy wheelchair but I am getting a new one soon. I hope you are finding things to keep yourself busy, distraction seems to be the most helpful tool in my coping tool box. I crochet and bead things for fun. I am also an herbalist but I've been too unwell to make medicine lately. Your blog and other blogs like it really help me cope on bad days and I just wanted to let you know how much I appreciate your existence out here in the interweb.
Thanks for this ! Your videos have made me understand a lot more about disability and deconstructed things I thought I knew. I find myself catching some of my thoughts sometimes and being like "no, that's not right, Aaron said .."
The thing with people ignoring you when you're in your wheelchair - I felt that. I do that sometimes, when I see someone that's disabled. I get in my head thinking that it's sad (I've now understood that it doesn't always have to be), then being scared that if I look at them they'll think I'm staring at them and be uncomfortable, so end up just trying to escape the situation all together and doing as if I haven't seen them, and then feeling really guilty about it. It's shitty and I think it's what goes on in a lot of people's heads. I don't know why there's this discomfort about disablity - maybe because it's not talked about a lot?
Just wanted you to know that your videos are important, inspires me to be a better human
i've been using a wheelchair for EDS and (rather severe) POTS for just over a year now. mostly for the POTS though, my sublux/dislocations aren't as bad as yours. going from using mobility aids like canes or my wheelchair when I absolutely need them to using my wheelchair all the time has made my life significantly better. love this video, i really wish more people were understanding. also the weight lifting metaphor is really good, i'm gonna use that
I actually got an ad for a travel wheelchair before this video 😅
"Not in its assigned seat". XD I love your way of wording things. Thanks for sharing your story with us. I think it's really helpful to people trying to work out and justify their own situation (I've recently gained a lot more of a life from getting a wheelchair and it's things like this that helped me gain the confidence to do it) and I hope it helps others think about the world beyond "normality" too.
PS... it may have taken me a while to work out the cushion to the left was actually a cat. You have a cool cat.
As a chronic pain sufferer . I get you! If people can't see your pain they don't believe it ... Don't have to explain yourself to anyone
I've been following your story for years and when you got diagnosed I was shortly after. It made me feel alot better. I didn't see this video I had surgery the day before and was out for a while. I hope your doing alright.
Love Lamb just hiding in the cushions at the back 😻
God, that's exactly how I feel about canes jfc. I have one for like emergencies where I HAVE to but the reality is nah. Pretty much goes the same for armpit crutches or forarm crutches.
I love my wheelchair so much (her name is Black Betty)
honestly thought that the little lam was a floofy pillow until I saw the buby move uwu
can you talk about how your EDS has affected your transition?
Eli Blodgett I do remember he said it made it hard for top surgery scars to heal.
Oh yes, please !
I'm non-binary and looking for some kind of chest binder or compression top that I can take on and off without subluxing a shoulder. Currently I just use stretchy sports bras, but even they're not too easy, but I'm saving up for a custom one from Rebirth Garments as they have a lot of clothing that's made to accommodate disabilities. I'm not going to get any surgeries as I take forever to heal and scars tend to get itchy or sore for me. Like even my wisdom teeth that had to come out, it's been a year and a half and I still feel soreness every now and then, and I have some stretch marks that are really itchy. But this is just me, and I'm not fully diagnosed yet and there are many types of EDS that affect people differently.
“Wear and tear” I fuckin feel this oh my god. I also feel the whole “everyone is in this much pain all the time too cool cool cool”. I’ve only realized that I have chronic pain after talking to my SO and him pointing it out. I love u pal ❤️
I didn't know what EDS was, thank you for your video! Also, I love your voice.
Gonna start sending people this video when they ask about why I’m in a chair. You explain it so well!
Lmao I thought caelum was a pillow
I want to personally thank you for creating and sharing this video, if I hadn't of come across it I would have continued not knowing about EDS, and connective tissue disorders as a whole, and thinking that I was unfit/ not eating right etc. It's a relief to know that what I've been suffering through, thankfully only chronic pain for the moment, isn't normal. I have been able to find a doctor who is now testing me for the possibility of a connective tissue disorder
I am getting close to a diagnosis of (some connective tissue disorder) as I am getting a specialist referral, thanks for this video it is so validating to see someone I can connect with on several levels ( I am also trans). Thanks for everything you do 🤗
Thank you for making this video, not just to explain what you’re going through but to spread awareness. It’s for social reasons that I struggle to use my cane on days that it’s painful to walk, because my knee caps decided to move out of place and now I just have bone grinding on bone. People think cause you’re young and can walk normally that you’re faking, and it’s difficult taking time to explain that I’m in pain when I walk when my kneecaps decide to go on an adventure on the side of my leg, and they don’t wish to go back. I don’t have EDS, and I couldn’t imagine it, considering my knee and knee joint pain is enough trouble on its own. Talking to doctors the surgery to replace my knees is long, painful and needs to be replaced after 10 years with horrible recovery, I opted to just do what I could to help what I’ve got, as mobility aids are a thing, and at the time I was 16, and 10 years later lands me at now at 26. But seeing the public’s reaction to that, scared me from using my cane for a long time and just going outside in general when it was too painful to walk (I will agree cane is more for balance, but is enough to get me around for a bit till i can sit down). I think these things need to be brought to peoples attention and to a wider audience, and I hope that message reaches people. Thank you really for sharing, and hopefully peoples mentality to these things will slowly change and be less judgmental
The elevator thing was so relatable, I had an elevator pass in high school because of visual impairment it used to drive everyone else insane.
I have hEDS and I'm going to Ikea tomorrow. I was told it was unfair for me to take my chair cause it takes up space in the car, and 'I could walk like 4km a couple weeks ago'. Why is it unfair, and why do I have to explain myself over and over that my pain isn't predictable. I also think its unfair that everybody else can walk without pain at the Ikea, like I'm not crying about that so why do you.
Love your video as it highlights that make the person who has the condition make the decision on what they need that day.
I have brittle bones and weak joints caused by medication I had to take growing up for other conditions, this means I'm in a splint (like a cast that I can take off to wash my skin) for my wrist and sometimes other joints on and off because of the pain from previous breaks and that im missing part of the scafoid due to an infection.
A lecturer (I've always had issues with this person) said to me the other week "why do you always have something wrong" and I don't think they were expecting the 20 min rant about how my health affects me even if it's not visible and how inappropriate it is to expect someone to have to explain their health conditions. From other things this person has said I think they believe I'm faking because there are some days if I'm sitting in class and don't have practical classes/don't think I will have to move around much I won't wear my splint or I'll take it off.
It seems that some people really just can't understand that some days are better than others and judging someone because of the splints, casts or mobility aids they are having to use that day can be harmful as that may be the only thing that allows them to leave their home.
(sorry for the long rant hahaha)
This video was super good! These slippy joints won't get u down
i wanna hug you so much I- skkekskfs;dg;fsdkgh
I have to pause this because I’m experiencing a major panic just because you’re describing your symptoms. I can’t imagine living them. I think I’d die. I have a weird joint and ligament phobia so any discussion on those topics really sets me off. I’m just going to take a breather, then finish the video because your story is important. But honestly, I’m in awe of your resilience. A mate once dislocated their finger in front of me and I started crying uncontrollably. Not sobbing or anything like that. I just felt so panicky that tears streamed down my face out of my control. That’s how severe my phobia is. What I’m trying to say is that I emphasize, but not just like “ah mate, that sucks” but more like “omg if that were me I’d actually die”. You’re fucking strong, that’s what you are!
I’m at the ankle point in the video and I had to pause again. Damn, Aaron, I feel light headed and sick. Why isn’t this syndrome not more known? If using a wheelchair helps you, go for it mate. I’m ready to crawl into myself by just hearing of this concept.
I couldnt have explained it better so thank you for explaining it for us.
This reminds me of my Aunt. She has a Disabled Parking Tag but a lot of people don't get why. She seems to get around really well so people (sometimes) assume she's "working the system". But in reality she has had several surgeries on her knees and occasional dizzy spells that make it hard for her to walk long distances. People need to quit judging people and try to understand that not every illness is blatantly obvious. Thank you for making this vid.
Aaron you're such soft and kind and gorgeous person... your videos have helped me so much and I (an autistic queer person with chronic illness and disability) really feel like we are so similar, just the way you speak about things is like eerily similar speech patterns/ways of explaining etc... I've had coffee so this might be a bit of a high-energy comment sorry but it's just so good to have found you
Thank you so much. I have EDS myself and I just came to the realization yesterday that a wheelchair is going to help me out a TON but I needed to find ways to explain that to my friends so when they ask (I’m sure they will) I can help them understand. This video is powerful. Thanks a bunch 🦓🦓🦓
first off, i'm gonna have to show this one to my mum, bc you just explained how frequent subluxations are better than i ever have.
and secondly, hey, weird ankle buds! mine go in the opposite direction when i'm sitting/lying down, but they collapse in like that when i stand! it's kind of neat (? in a cool but also lolsob way) to see other folks who have the joints that go wonky in the same way as mine. my wrists also do the rotation pop, which is... more obnoxious to me than the ankle collapse, tbh.
Thank you for educating us and giving us all a glimpse into your life, Aaron! While I don't use mobility devices, I have needed knee and occasionally wrist or elbow braces since my teen years. It's frustrating how folks want to question or even convince you to stop using medical assistance devices of any kind. Like, um, who made you the Disability Police?? Videos like this are super important for everyone, but especially in intersectional communities where disability is often neglected or completely forgotten. So thanks for raising awareness!
I too have EDS, and use a wheelchair for every step I do outside of my house. Usually I tell people that my body reacts to "walking 1 min" like theirs would do "marathonrunning for an hour" Have POTS too, so my heart rate skyrockets, my legs will start to give in, and if I wait to long I will have to lie down, no matter where I am... Just don't care, easier said I know, but believe me, they don't care about you and the chair, so why would you care about their reaction ;)
Great video! I feel so seen! ❤
Thank you for this. Kudos to you for educating others.
invisible illness squad! the faking it part, I feel you. when I was still in school my classmates accused me of faking my illness because I only joined some of the activities in gym class. well of course you'd rather choose to join ball games instead of the running laps for 10 minutes part of PE and then being unable to walk for the rest of the day. they had seen me using crutches and my wheelchair during bad episodes and knew I was often in the hospital but still thought it was for attention. people really can't wrap their minds around anything that differs from the stereotypical ill people that are portrayed in movies
You take care of YOUR self ❤️
Hey Aaron, I'm so thankful for this video! I recently (a couple of weeks ago) got diagnosed officially with hypermobile eds!!
People don't believe me when I tell them I dislocate all of my joints countless times every day and that I have permanent subluxations! My ankles, jaw, shoulders, and hips are all permanently subluxed.
It's incredibly painful and it's worse when people don't believe you about it!!
I can also walk some but not much, it's very dangerous for me. I cannot use canes for the exact same reasons! I will often take it out with me anyways and not "really" use it just to have it as a signifier that I am disabled.
I've never owned crutches but I don't know that they'd help because my shoulders are so bad.
Walkers are helpful for me but I do tend to use the seats more often than not. Thankfully I live with my grandma so she owns several walkers!
I do own a very very ill fitting, manual wheelchair I got at goodwill and I'm still scared of using it in public because I've been judged so harshly for it :(
This is definitely a video I will be sharing with anyone who doesn't believe me!
Love your videos as always, you are so good at explaining things in a way that I seem to be unable to. I very much relate to you because I am also an autistic trans man who has eds 💙 much love to you and Karina!
Small addition, thank you for adding that your ankles cannot be "corrected" with braces! I can't wear most braces because my joints will not go back in place so a brace just holds it in a subluxed state and causes far more pain! I also can't use compression stockings for the same reason /:
LAMB BALL IN THE BACK
Also, have you heard of #buildaladder? It was started by one of my favorite RUclips creators (Martina from Simon and Martina) who has EDS too and it's a great movement! Their content is super enjoyable over all!
I wanted to comment the same :) I've also known about EDS from Martina
never forget that you're a great person! Thank you for making videos and for talking so open about your life and your experiences
I have eds and use a wheelchair often. I have a lot of people ask me why. So I tell them that I have nothing wrong and just do it for attention. They sometimes go 'no, seriously, why?' so I just repeat 'yeah, seriously... Thanks for the attention.' knobs.
I have severe hypermobility (not sure if it's EDS yet) and it's been flaring up a lot recently. I'm honestly terrified of using a wheelchair because of people's reactions and not being 'disabled enough.' There's also a part of me that feels like I'm exaggerating or faking it even though I know for a fact that yep, my knees popped out of place and I'm about to collapse. Thanks for making this video, Aaron.
I relate to this so so much. I have muscular dystrophy and people always look at me up and down when I ask if there’s an elevator at the place I’m at, because I don’t “look disabled”. I’ve had someone literally laugh at me replying “an elevator? Haha no, we don’t” as if I was asking if they had flying goats. Or this time I asked to use the elevator at a restaurant because there was about 30 stairs to go to the second floor and the waiter asked me how badly I needed it cause he didn’t have time to reply to every single demand. People need to stop policing who’s disabled enough to have the privilege of listening to their body, because that’s really what it is.
I get so sick of explaining why I use mobility aids that I try to avoid using them around people who have seen me walk without them, and you did a very good job of explaining an invisible disability here. I didn't care in college, but now that I work a job that requires standing for long periods (no other options) my coworkers haven't seen me use it, and would probably be mad at me if I used my cane and tell me that I don't need it - I get enough crap about using straws with all of my drinks as it is.
Thanks for sharing! My friend has EDS, so this has been very informative.
It's really hard for Aaron to feel comfortable like a lot of ambulatory wheelchair users. People with chronic pain in their joints or have chronically tight muscles for example. It doesn't matter, though, how long you can go without it as much as being present in the moment or in terrible pain or physically unable to walk.
Thank you very much for all of this information and sharing your personal experiences.
It shouldn't be necessary to have to explain all of this, but hopefully this video will make it less necessary for others to have to explain.
You rock man, keep being the awesome dude you are.
Everytime I hear someone complaining that they think someone is faking something I always try to explain this to them. There are many reasons why people might need something and it's not up for discussion. I used to require a cane to get around and because I was young people always talked to me about it but doctors didn't really know what was going on. It turns out that I have one leg longer than the other and the doctors never noticed it so it was always exhausting getting consistent inquiries and having to give people an inconclusive answer and make people sad... all my joints were just in lots of pain and there was an easy fix after finding the right dr. The worst part was my own self gaslighting and the constant questions when I don't want to talk about it.
I thought that callum was a pillow until I saw him breath
sidenote...I totally get where you are coming from and I wish people could be more understanding of differences and disabilities. When I use the elevator at work to go up 1 flight of stairs coworkers will say things about it. I don't exactly love explaining my chronic illness every time or having to say yeah well my knees are swollen twice the size they should be soooo I'm not going to walk up the stairs. I've had so many instances like this because of my 'invisible' illness. I've learned it's not really invisible, I only show what I want and people only see what they want.
We as an eds community also acknowledge wheelchair privilege. Some of us have to fight insurance and doctors for years to get a wheelchair if we can't afford to buy or rent out of pocket.
I got so excited when I saw that you posted this that I signed "yes" so enthusiastically that my wrist popped out of place..... yay hypermobility
I would love to watch more vids of this pal!
I fell this so much. I have cerebral palsy but mine is different than most because I was born with it instead of getting injured so its almost invisible as well. Also I have had arthritis from birth which doesn't help. I look completely normal but my leg muscles never loosen properly and if I push them they cramp to the point I can't unbend my leg. And it can last for days. I know the struggle with pain as well. Where other people might sayit's a 10 mine is like 3 and I can ignore it cuz I've been through way worse for much longer and not all doctors even understand this. It's nice to hear from someone else who does. Thank you for sharing. 💙
I really enjoyed this video. I honestly wish I could share it with some of the people who live in my building. There's a lady we all know who everyone 'knows' can 'walk perfectly fine' who uses a motorized wheelchair. She has really bad foot pain and like you said, there isn't anything to gain by pretending to be disabled. And everyone talks shit about her and says they were raised to know better than to use a wheelchair when you don't need one and it's bad karma and making fun of disabled people. But they don't live in her body and they don't know what her experience is or what exactly her problem is. I wish I could share but they honestly probably wouldn't really care. 😔
This was a good informative video! Thanks for being vulnerable enough to make it, I learned a lot! But when what I thought was a pillow got up and walked off screen, I flipped my shit😂
I tend to have a lot of issues around my knees, which is quite inconvenient on my back because you're supposed to lift with your knees and not with your back but I can barely lift myself up let alone an added weight. Probably one of the main reasons I've been getting back pain. and I don't get why anyone would fake a disability coz just getting pity is enough to make someone feel guilty, even though no one's to blame for anything.
i want to go into the medical field when i'm older, and your videos are always amazing, and it helps me realize how i can help people with chronic illnesses better as a medical health professional. my younger brother has had multiple open heart surgeries, and cant play contact sports as a result, he also loves lacrosse, but his doctors have told him he can definitely NOT play, and I've grown up not really realizing that I've had the advantage of playing ice hockey until i fractured my ankle. i feel like that experience gave me a whole new view on things, because even though I've grown up with someone with a disability, i just threw it to the back, and only when it happened to me, though only for a short while, i looked at that again, and realized i took this thing that was so normal to me as a chance everyone is given, but since that experience, and furthering my knowledge by watching your videos, i know its really not. so thank you so much for everything you do, you're an absolutely astounding person, and thank you for taking the time to read this comment if you do. love you!! -tyler (why did i end this like a letter?? idk)
My cane subluxes my wrist, hurts my shoulder and elbow and causes SEVERAL muscle spasms in my neck, but my knees, hips and ankles sometimes hurt so much I have to use a cane. And I have noticed I doesn’t help much also, but honestly my mother doesn’t want people to see me as disabled. Even though I am disabled.
If anybody's watching this video and wants to understand EDS even better, the channels Amy's Life/Amy Lee Fisher has tooooons of in-depth information on EDS as she suffers from it too
When I was 13 I was diagnosed with idiopathic arthritis after months of complaining to my track coach that my knees and ankles were hurting and finally going to an orthopedic surgeon with 17 stress fractures in one of my shins. (I was also on a competitive gymnastics team at that time).i had been taking the maximum amount of both ibuprofen and Advil every single day just to be able to like function. My moms to this was getting me a single knee brace and calling it good.Recently I lost my health insurance so my friend that’s a nurse and also has EDS said that she is about 99% sure that that is also what I have I’ve dislocated my knees just getting out of bed more times then I can count. I can turn both of my arms a full 360 degrees with 0 effort. Right now as I’m holding my phone to type this I can feel the strain on my wrists. My second and third toes look longer then my big toe because they wont go back Into they’re sockets anymore. I feel your pain I love you so much ❤️❤️❤️❤️
Okay, I don't usually comment but I'm literally screaming right now. I used to watch him all the time and I had no idea he had EDS which I also have and I am actually very happy to see someone I looked up to a couple years ago talk about something so significant in my life.
My mom has a shit ton of back issues and can't have surgery because to correct all of her issues she would need a metal rod placed on her entire spine and it would cause her to be in more pain. Technically it would "correct" the issues, but it would make her pain so much worse. She also uses a wheel chair when there is a lot of walking because she needs to sit very often and chairs aren't always available. Every time she goes to a store she has to have someone come with her because she can barely lift two liters of soda without it causing severe pain, so she has a really hard time with lifting bags full of groceries. Reaching things from a high shelf is also hard for her so she needs help with that. Walking in the store is difficult and she needs to sit, BUT at the same time if she were to use an electric wheel chair (she can't use a normal one because it causes her extreme pain to use a manual one) having to get up and down from it to reach high shelves also is very hard on her so it's almost easier just to walk. She has a walker, but it's too heavy to lift on her own so she can only use it when someone is with her. People don't realize how many challenges people with "invisible" illnesses face. I don't have chronic pain, but because of my mom I am way more understanding than most people. People need to learn to not judge others and say they're faking. Another thing that pisses me off is when people say shit like "electric carts in stores are for people with disabilities, not fat people"... but what they don't realize, people may be heavy because they have a disability and can't get exercise. Wow that was a lot, but just know there are people who do understand and won't judge you. As sad as it is, sometimes it takes people to know someone with an "invisible" illness (I put that in quotation marks because a lot of times it's hardly invisible, but people don't realize that certain things someone does is because of their illness) to be understanding. Much love
My friend have EDS and she need to use knee braces, wrist braces when she sleep and she have metallic finger splints. She can't use bus anymore (she don't have car) and she don't get support for taxi or wheelchair so she just stays in home. I hate to see how badly our society and doctors treats her just because they don't have any idea what EDS is and don't realise that she have pains and she really needs all that support and help.
I have really bad knee problems and sciatic nerve issues and sometimes even walking fully through a store hurts me so much but due to stigma I am always hesitant to use the scooters they have because I look like an able bodied youth (age 26) and I don't like people staring at me and judging me so i'll usually just limp through the store instead.