Living with Hypermobile Ehlers Danlos Syndrome + Our Mobility Aids ft. Martina

I hope mobility aid companies take note. Even if you are "older" there is no reason why your cane, frame, walker, rollator or chair can't be pretty or fun. Also, a few more youthful and fun models for the ads would be nice too. 😊

One day a lady says to me "What did you do?!" In the pharmacy like just assuming that if I have a condition and I'm young that it must be my fault that I caused an injury. I was so tired and sad that day, I just screamed back at her "I HAVE A DISEASE!" And she just stood there with her mouth open (along with everyone else). I don't know, somedays I just can't deal with people.

Heck yes! It took us all summer and nearly all winter but we finally posted our videos up...IN UNION!!! :)

I'm 19 and I have early arthritis and it's always so fun to hear "your too young for that!" WHY THANK YOU YOU HAVE CURED ME MY BONES NO LONGER HATE ME

In case anyone was totally confused when she said “who has the spoons for that?”. She referencing the spoon theory. The spoon theory is a way to illustrate the reality of living with chronic fatigue. It’s more a thought experiment or an analogy. I suggest you google it cause I could never do it justice. I do recommend Jessica’s video where she further illustrates by playing the sims in conjunction.

I feel like as a person without any disabilities, watching these videos is good for me because now I see someone in a wheelchair or using some other aid, and I literally think nothing of it anymore. I mean, I notice it, of course, but I don't wonder what the reason is or anything at all.

That "build a ladder" thing is really great, and it's nice to see I'm not the only one to see it that way. Honestly, it's kind of the mindset I try to be in when I'm in the darkest days of my depression. Like, good job, you took a shower ! You got out of bed ! You went out, even for five minutes ! All the little accomplishements matter.

Thanks for talking about this ladies. Because of stigma, my partner was so resistant to getting a cane to help him with his balance, but we found him a lovely second hand brass goose-headed cane and it completely changed his life. We call it 'the goose' and that helps a lot to not draw attention to it out in public, but also mentally creates a positive relationship with the use of his mobility aid. Plus it's super heckin rad.

It infuriates me how people STILL doubt me when using a cane. They bump into me, get pissy that I walk too slowly, look at me all the time from wearing dresses and having a cane for some reasons, tell me it's ok I'm young, make shocked faces when I stand up from a wheelchair in the airport as if I was miraculously cured or just lying. People are so noisy and misinformed. And even if they were just ignorant, they don't have to make this harder for us. Before i became disabled I never cared about disabled ppl, I didn't bother them nor even stared. It was common sense to me to not act condescending.

As a fashion student with an invisible disability of my own, I have a serious interest in accessible design—I am so so excited you made this collaboration!

And now, I want you two to have a collab with Jessica Kellgren-Fozard.

I have to start using a cane again & some gossipy acquaintances started grilling me. I was patient with the empty smiles until they started asking for my medications & their spelling, like it was some test. I made it clear that they can freely educate themselves online but I'd like to talk about other things since my condition can be depressing. It took repeating, but they got the message.

"If you don't smile, you cry." Wordddd 👏👏👏

I wish the "Not all disabilities are visible" was a enamel pin! It really describes my fibromyalgia!

When I'm using a wheelchair, sometimes I feel like an object... People will push me without asking if I'm in their way in a supermarket for example. They don't get why it so rude! Would you pick me up to move me if I was standing up? Would you touch my legs? Would you shove me if I had my cane instead of my wheelchair? Now I always put a jacket over the handles, or a bag and if people touch I turn around and ask if they're trying to steal.

I totally smiled at the brain fog moment. I have them often enough that I don’t even try to explain them to people anymore. Thank you for the recap of “build a ladder”. This has been a great collab with you two! Thank you for doing it!

Me (disabled person) 2 seconds into build-a-ladder description: oh this is cheesy Me 2 more seconds in: sobbing like a baby (gets hit home so hard) ... def needed that reminder thanks!

Sickness behaviour is a real thing friends. If any of us had these issues acutely, our bodies would be begging us to stay in bed until we recovered. To me, it makes total sense that for a chronic condition, my body is still like “don’t get out of bed, don’t socialise, don’t shower”. Any day that I do any of those things is an achievement, and the days I don’t are totally justified.

As an able bodied human being, this is very informative and it makes me feel like i'm starting to grasp a better understanding of folks who are not like me

“If you don’t smile you cry” oooh my gosh you’re so right! I laugh and smile when it comes to talking with others about our symptoms, but then the others who don’t have these issues hear it get sad and are always about to cry thinking about what we deal with. But like. We handle it, and we can joke about it, so it’s okay :) Hooray for irregular poops!!