Ehlers-Danlos: Life on the sidelines

Insight into growing up undiagnosed, this was my response after diagnosis. Update: I think much differently several years later, but may of the basest feelings still hold true. I've since found karate to be a great endeavour, which gives meaning and freedom to my life.

[@ReineDeLaSeine14]

Thank you for making this...I have EDS as well.

[@blondee84]

I find so much strength in your videos. This one totally describes what I'm trying to overcome right now. My doctor said not to do anything where the risk outweighs the benefit: running, jumping, riding rollercoasters - pretty much anything physical but swimming. To see people who are able to do those things, especially when they don't realize what they have, brings on an array of emotions. You pretty much sum it up a lot of emotions in here.

[@scottgandersonmd]

Don't take this video down. I'm following in your footsteps and it helps to know that you can be here, then move on.

[@ufo8mykat]

Thank you so much for this message. You've given me lots and lots of encouragement. I had matcha last night and thought of you, too. I'm very glad you're coming forward about your own health. Sometimes it's hard to know whether to give your attention to the illness or the counter-wellness. There's a balance, I guess. :)

[@ufo8mykat]

Yup. We're lucky to know now that hypotonia is characteristic, so we can combat it as best we can.

[@ufo8mykat]

You're so right, swimming is great. This was my first EDS post, so I was pretty unhappy at the time. Now I'm much more well adjusted. I consider taking this video down from time to time because it's just so darn sad, and that's not how life has to be. Thank you for your comment!

[@ufo8mykat]

It's very important to stay active, it would have been good for me to suggest that.

[@drooooopy]

I never could do some of the things mentioned here, like riding a bike, soccer etc (just never had the coordination/depth perception etc) and I regularly worry, especially as I age, about being an accident waiting to happen here in my home when alone, etc, how many times have I nearly snapped my ankles, the times I've already tossed my leg muscles so they won't hold/heal and I can't even walk for weeks but at the same time I have trained in a martial art before and I might again some day

[@ufo8mykat]

I'm sorry, I lost someone's comment into the depths of the internet! But they said I had it all wrong and should stay active. They're absolutely right, but biking and forcing joints to do things that can push them beyond normal range or cause dislocations. We should definitely all stay active. This was my first video about EDS, I was a mess then. I hope this gives insight into how it feels without condoning inaction. :)

[@ufo8mykat]

How are you handling it?