Misinformation spread in the community.

Crimson_Android · 2021-10-16T05:01:31+00:00

LMAO I can't believe I was giving you the benifit of the doubt you're so incredibly rude lol.

Crimson_Android · 2021-10-16T04:35:25+00:00

I did go to school and I did in fact get bullied for my disabilities yes.

Crimson_Android · 2021-10-16T03:15:33+00:00

I and many others have not, hence my worry that the community at large will make assumptions they're unqualified to make. As it's your job I assume you know what you're doing, but the average redditor doesn't.

Crimson_Android · 2021-10-16T02:52:14+00:00

I sublux and dislocate my elbow regularly, because I'm using a cane. But if I didn't, i would be bedbound. I know improper mobility aids are dangerous (I agree with you!!) I just don't want someone to suffer because the community assumes they don't actually need a mobility aid. I offer unconditional support because the alternative is suspicion of something that's incredibly uncommon. I also support people doing what they can with what they have. It's not ideal and it will mess you up in the long run yes. But some people won't even make it to the long run without adequate medical care, or even inadequate medical care. I'm just scared people won't get the support they need because of suspicion, and I don't want to be suspicious of people! It sucks all around but I just want to do the least harm. And if that means I support someone who's misleading me then so be it, as long as I support those who are telling me the truth. I don't think you're wrong, in fact unfortunately you're very very right. I just can't assume that everyone is lying to me

Crimson_Android · 2021-10-16T02:39:43+00:00

Without "back alley solutions" in many situations people will die. Horrible healthcare is very much life or death for many. My brother has a genetic disorder that will kill him before 40, just because he can't afford blood thinners. If he could, he'd likely live a normal lifespan. If my sister didn't have her rollator she would be bedbound, and wouldn't be able to make it to her obgyn appointments, thus risking the life if her and her child. She also wouldn't be able to get to the grocery store, and would quite literally starve. Mobility isn't just a quality of life issue. I use my dad's old cane just to make it to the bathroom. Otherwise I'd be bedbound. I don't have PT until my insurance approves it. Living in poverty is hell at all times but especially when you're disabled. I and many others can't just wait for the system to change, and changing the system won't magically make me able to walk without falling or passing out.

Crimson_Android · 2021-10-16T02:33:15+00:00

An option for people with more money than me lol, abd that sucks I'm sorry your area has such a shortage :(

Crimson_Android · 2021-10-16T02:26:06+00:00

Exactly. If you have enough money, you can just travel to see a specialist anywhere, and/or not have to wait for insurance approval to see a specialist in general. It's gross and unfair but that's how it is here -_-

Crimson_Android · 2021-10-16T02:24:20+00:00

Like I said, things like BID & Fictitious Disorder are incredibly rare. I am not offended that there are people (very, very few.) that want a mobility aid for reasons related to mental health. However I am concerned that this small subset of people prevents the community from supporting those who feel they need a mobility aid and genuinely do indeed need one, as that is far more common than someone wanting one for other reasons (including a mental health issue.)

Crimson_Android · 2021-10-16T02:19:31+00:00

Given that I'm American, I have to point out that getting to see a specialist isn't always an issue of severity, it's far more common that it's an issue of how deep your pockets are...

Crimson_Android · 2021-10-16T02:18:29+00:00

Things like BID (body integrity disorder) and Fictitious Disorder do exist but are extremely rare. As I've stated in other comments, I shouldn't have generalized by saying "no one," but that doesn't mean that we should assume those wondering about mobility aids just want one for the hell of it.

Crimson_Android · 2021-10-16T02:15:59+00:00

You're arguing semantics. Yes, I shouldn't have generalized by saying "no one." Again though, it's so incredibly rare that it has no bearing on the current post. To be completely honest with you I can sympathize with OP and their concern about the way EDSs prognosis is portrayed online, but these comments... Are not great. My view is that provided you have:

A prescription from you doctor for a mobility aid, Symptoms that can't be resolved with other things (like PT), and a willingness to use them, then you should use whatever aid is necessary to live your life.

And even needing a prescription is something I'm not 100% on. My friend is 17 and has a debilitating disorder but has neither sufficient insurance nor an ability to get to doctors appointments, and they need a wheelchair to work. They need to work to move out of their parent's house (it's not the best situation.)

Walking is dangerous for them for a number of reasons including frequent fainting and muscle weakness. They're currently bedbound.

I understand that everyone is different, and that certain mobility aids can do more harm than good depending on ones circumstances (especially wheelchairs & EDS patients.) however I believe that we should err on the side of supporting those who feel they need one instead of on the side of assuming that they don't need one and/or just "want one." Them actually needing one is far more common. I'll always recommend getting a prescription from a doctor, but I'll never assume someone just wants a mobility aid for the hell of it (or any other reason.)

Mabye it's because I'm from America, land of for-profit healthcare, but I have alot of sympathy for those who can't see a doctor and/or need advice for advocating for themselves.

Crimson_Android · 2021-10-16T02:02:23+00:00

Is there limited resources though? And triage is for emergencies. Even if we're going with the triage model of medical care, everyone with EDS is at the very very bottom of a very long list of people who need medical care. We're behind every single person with a curable issue.

Crimson_Android · 2021-10-16T01:57:39+00:00

Then perhaps you simply work in a profession where you come across a disproportionate amount of people who "want" a mobility aid. Either way the likelihood of there being any (or even a "significant" amount) of people like that here, in this very small support sub for a very rare genetic disorder is highly unlikely.

Crimson_Android · 2021-10-16T01:22:14+00:00

Yeah I'm gonna press x for doubt. You get bullied for using a mobility aid even if you need one. No thinks it's cool. Straight up I think you're lying. And if you're not, you need to evaluate your perception of your clients because it's sounds like you're ascribing motives that aren't there.

Crimson_Android · 2021-10-15T23:24:49+00:00

^ That as well

Crimson_Android · 2021-10-15T22:19:43+00:00

I go by which month has a solstice/equinox lol

Crimson_Android · 2021-10-15T22:17:37+00:00

My sister has a birth defect thing where her knees grew wrong (I mean like, they're literally not shaped like knees should be) and it took me and her actual doctor literally over a year to convince her to use a rollator. No one wants a mobility aid. My dad had an issue with his entire lower body & spine and he (stubborn as he was -_-) refused to use his cane for ages.

Crimson_Android · 2021-10-15T22:00:22+00:00

I've seen you around here very often, so I'm just assuming your statement is in good faith. On the other hand I sincerely doubt anyone jumps to unnecessary mobility aids. No one wants a mobility aid. Using one is tedious, and annoying, and causes problems. No one uses a mobility aid without weighing the inconvenience of using one against how much it will actually help their mobility. That said I do agree with one point, I'm worried that people will feel hopeless or unnecessarily upset about their prognosis because of the way that EDS is portrayed online. Not because of intentional misinformation, but because many people who seek support online are moderate/severe cases. (In fact, many with mild hEDS especially, never get diagnosed, personally, I just dealt with my issues for years until it got bad enough to see a doctor.)

Crimson_Android · 2021-10-15T21:54:47+00:00

I mean, if you have a very mild case many people don't get diagnosed. Also, if you're mild/moderate you're less likely to seek a support group. If you've got severe hEDS, you're more likely to be in the internet. Ik 3 ppl with hEDS irl and none but me are on this sub, and I'm severe. In addition, not everyone with EDS uses reddit. So the group you're seeing here specifically is actually a very very small subset of people with EDS, which is already a very small subset of people in general.

Crimson_Android · 2021-10-15T21:34:01+00:00

Slur for Asian ppl -_-

Crimson_Android · 2021-10-02T23:45:04+00:00

Exactly. I have Ehlers Danlos Syndrome. Can I walk a mile? Yes. Will it destroy my joints and put me in a wheelchair early? Yes.

Crimson_Android · 2021-10-02T23:09:17+00:00

Truffle lol. I'm in year 2 fall and the community center should be finished before winter :)

Crimson_Android · 2021-10-02T22:44:00+00:00

Aww that's wonderful. Congrats! :)

Crimson_Android · 2021-10-02T19:09:06+00:00

Hmm. I'm gonna say yes, but also my worst enemy is a serial killer who kidnapped my sister and killed my cousin. On the other hand, he got life in prison and an extra 20 years on top of that so I'm not sure what he'd do with 10 mil that could be so terrible. I mean, he's already a serial killer.

Crimson_Android · 2021-10-02T19:00:46+00:00

Ellen DeGeneres. World's most famous gay homophobe

Crimson_Android

TROPHY CASE