(since this ended up being longer than i expected, tldr: how did you come to terms with the fact that you needed mobility aids? specifically your wheelchair, but other mobility aids too if you think that would be helpful to talk about)
hi max, ive been following your art blog for im pretty sure multiple years now, but i actually wanted to ask you about your hEDS. ive recently been doing a lot of research, and i think i probably have it. im currently waiting until monday so i can call my pcp and schedule an appointment to try and get a referral to someone who knows more about EDS. it definitely explains a lot of things that happen and have happened to me in my life. the most prevalent thing pain-wise for me is my feet. my whole life, i have had terrible pain in my feet if ive been walking for a while. so bad that when i was in high school i would get home and my feet would be throbbing just from the walking at school + the walk to and from the bus stop. and on outings with my family, my feet sometimes start hurting so bad that i want to cry and i start walking on the sides of my feet to try and alleviate the pain. today i made the realization that i could benefit from mobility aids. after a bit of thinking and research, i realized that the best option for me would be a wheelchair. this was a really upsetting realization for me for multiple reasons. coming to terms with the fact that i really am disabled, worrying about my family worrying about me if they see me in a wheelchair (even though they know about my foot pain), etc. i just wanted to ask, how did you come to terms with needing mobility aids? specifically your wheelchair? i know you don't use it all the time, i don't think i would either since walking short distances isn't much of a problem for me. if you think talking about your experience with coming to terms with needing crutches would be helpful as well, then by all means, go ahead.
Firstly, thank you so much for taking the time to write this message to me. Secondly, my apologies for replying so late (ironically the chronic pain and Brain fog makes it difficult to read and reply to long asks like these about disability so I do appreciate the provided tldr so I know your main concern!)
I sincerely hope you've/you'll be able to get appointments, assessments, diagnoses, and treatments from trained physicians!!! It's so awfully unfortunately common that doctors don't know much about hypermobility spectrum disorders or haven't even heard of EDS (i have witnessed multiple of my doctors goofing EDS in front of me or confidently telling me misinformation about my own conditions lol)
As for mobility aids, its i think its wonderful and commendable that you've realized that using one might help improve your mobility and quality of life. But i do also greatly understand the senses of 'grief' or 'denial' that come along with it, because somehow accepting that you need a mobility aid means accepting that 1) you'll be looked at & treated differently, and 2) with wheelchairs specifically (but can apply to other aids too like walkers and such) it means accepting that large parts of the world will now become inaccessible to you. And that sucks. It truly does. But for me at least, the benefit that using a wheelchair has brought me has made it worthwhile. I can stay outside on multiple hour long outings without feeling like im going to pass out from POTS or collapse from pain! I can go out on my own for longer and carry more things with me by putting the bags on my wheelchair handles! (Carring bags by hand almost always puts my wrists or elbows in subluxation)
But I understand the hesitation. I sometimes wonder what it would be like if fully able-bodied, non chronically ill/chronically pained people were put in an experimental situation in which they had to use a wheelchair for one day. I wonder what they'd notice that they'd never even been conscious of before. The small bumps on curbs and doorways and gaps between the traincar and the platform and all the STAIRCASES. when you use a wheelchair while also being chronically ill/chronically pained its essentially like being in a multi-player open world game, but you cant access half the map and you will never be able to, but all the other players can. And so they get to benefit from the experience and items in those locations that you'll never be able to enter. And you are constantly taking poison damage and even healing potions will never refill your healthbar to full. Something like that idk i got caught up in the hypothetical metaphor for a moment there but that is to say, I understand the grief that comes with accepting that you need a wheelchair. And I hope that everything will go smoothly for you. I hope that the benefits that mobility aids may be able to bring to you will improve your life and make it worthwhile. Good luck
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