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the way i keep hoping my hips will just fully dislocate or develop arthritis so i can finally get a wheelchair and have my pain and inflammation taken seriously by rheumatology ๐Ÿ’”๐Ÿ’” my hEDS is being so rude to me and i just want answers
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Anonymous 13w

I went for a run and my knees been wobling and popping it was a bad idea pookie

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Anonymous 12w

Same but with my knees, they be buckling and shaking so much

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Anonymous 12w

Neither of those things have to happen for you to get a wheelchair - someone with a wheelchair, eds, and no full dislocations

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Anonymous replying to -> #1 13w

my knees just do that on a normal day at work, and im usually standing relatively still for most the day

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Anonymous replying to -> OP 13w

Ah no I need chair

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Anonymous replying to -> #3 12w

i know, but my doctors and parents are very dismissive of the pain i'm in and they believe the wheelchair would be a hindrance to me. i don't need it all the time, but when i'm having a flare i lean on mobility aids like canes/crutches/walkers too much and it injures my shoulders. it feels like i need to prove to people that i need one

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Anonymous replying to -> OP 12w

To prove to my parents I needed a wheelchair, I went to a theme park (but a zoo or other activity where youโ€™d do a TON of walking and can rent wheelchairs) with them and rented a chair and laid it on thick about how much I wasnโ€™t in pain at the end of the day and how much better I felt and wow wouldnโ€™t it be amazing to have this option all the time.

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Anonymous replying to -> #3 12w

We also started by buying the cheap hospital style option from a local medical supply store (~$300) and I talked up its issues over time and how a custom one would be better. It kinda sucks, but in some ways you do have to โ€œproveโ€ it? Like very few people just 100% believe a person they only know as 100% ambulatory when they say โ€œI need a wheelchairโ€. They really just donโ€™t understand. But after *seeing* the difference my mom is a true believer and on team wheelchair!

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