gleditsia-triacanthos

[gleditsia-triacanthos]

Epigenetics are real, and EDS is not caused by:

- Mold

- Underexercising

- Stress

- Diet

You can totally improve your symptoms by addressing some of these, but none of these things hold the cause or cure for EDS. People took the concept of epigenetics and ran with it.

[gleditsia-triacanthos]

I am convinced those “signs you have EDS!” TikToks that list stuff like not liking to wait in lines, being clumsy, or ears ringing have set us back twenty years.

[gleditsia-triacanthos]

A little fed up with the hEDSification of everything. I told a new surgeon at a consultation that I had cEDS and asked how she thought it might affect the procedure (on my abdomen). She said that she’d actually operated on a few patients with EDS, and that it probably wouldn’t. I showed her the laxity of my skin (about 3 inches, not the craziest for cEDS but very much Not Normal Looking). She reacted audibly, admitted she didn’t know how that level of laxity would affect things, and was very glad I showed her.

This is what happens when subtypes aren’t specified. This is what happens when we use ‘hEDS’ and ‘EDS’ interchangeably. This is what happens when only the musculoskeletal stuff and chronic pain are talked about.

[gleditsia-triacanthos]

“It’s not about the amount of days in your life but the amount of life in your days.”

- A healthy person with a normal life expectancy

[gleditsia-triacanthos]

Disabled people who hate being disabled and wish they were born without their disabilities and/or never existed deserve a place at the table too btw

[gleditsia-triacanthos]

Literally. The level of infighting in the disabled community and the JEALOUSY I get from certain ambulatory people/people without SCI astounds me. There is no magical disability line that everyone takes you seriously for crossing. Paralyzed people get fake-claimed.

full disclosure when people are like “people would ABSOLUTELY take me seriously and treat me with sympathy and understanding if I had something serious like a spinal cord injury!” all it says to me is that they don’t know any person with a spinal cord injury that isn’t a character from a franchise

[gleditsia-triacanthos]

hate how being visibly disabled makes people talk to you like a dog, and not even in a fun way

[gleditsia-triacanthos]

Also, the assumption that chronically ill people haven’t done their research and tried as many fixes as possible is frankly insulting. “Have you tried xyz?” is such a stupid question because the answer is almost invariably a) yes or b) there’s a very good reason no.

Friendly reminder that not every chronically ill person can physically, mentally, or financially "try everything."

The "miracle cures" and the "well, have you tried this?" solutions are typically expensive and extreme. Most of us cannot afford to throw money around on something we have not even been advised to do by a medical professional. A lot of disabled people are in poverty and medical debt.

For a lot of us, if we try one of these extreme, experimental "miracle cures" it could end up with our health declining, to the degree that (for those of us who do this) we can no longer work, go to school, or even just take basic care of ourselves.

We are not as invincible as healthy people. Small things that might make someone feel a little unwell for a few days can impact us for our entire life.

So no, I have not "tried everything." Most people haven't. Most people cannot. Please stop doing the "have you tried xyz" thing at chronically ill people. Best case scenario it's a little silly, worse case scenario it's just salt in the wound.

[gleditsia-triacanthos]

As someone who used to be invisibly disabled and is now visibly disabled, I can assure you, pity is not acceptance and certainly not accommodation.

[gleditsia-triacanthos]

So true. This isn’t entirely what OP was talking about, but I also notice a lot of people with soft access problems saying they can’t do certain things when in fact they struggle to do certain things. There’s room for everyone at the table, and a task being made significantly difficult is disability, but failing to clarify the difference between “I can’t” and “it’s very hard for me” means that a lot of people are convinced that I (as someone who is completely non-ambulatory) can stand to reach something on a high shelf. Or walk down a single step. Or get into an Uber without help. Important distinction.

i think people don't know how to differentiate between hard access issues and soft access issues, or don't want to. a lot of access issues aren't clearly one or the other but having no ramps is a hard access issue for obligate wheelchair users. you've gotta stop comparing every accessibility issue to ramps.

because when you compare a soft access issue (an issue which makes accessing somewhere or something painful, difficult, insulting, frustrating, etc) with a hard access issue (an issue which makes accessing somewhere or something impossible) then you inadvertently imply that the persons who experience those hard access issues don't also experience soft access issues.

like say you have a disabled student in a wheelchair. education is famously inaccessible, so everyone says "not providing this is like not providing a ramp." but it's not, firstly because they don't even provide ramps much of the time. like they straight up aren't doing that and you're acting like it's this horrible impossibility that we should understand is super bad so you can compare your own thing to it. which is just incorrect when they're not doing it.

but let's say there's a ramp. so there's a ramp but it's a 5 minute detour to get to so the wheelchair user is always late. the desks are too high to see past, the lecture hall has automated doors but no dedicated wheelchair space so they have to sit off side. can they see properly? does someone catch them up with the missed introduction? where will they take notes?

and the accessible route can be even longer than a 5 minute detour. the route might be round back, next to all the trash/rubbish. that's not dignified but it's also not sanitary either, which is dangerous to disabled people. is it round back where everyone smokes? i sure hope that wheelchair user has no respiratory issues. are they getting penalised for being late all the time? will that affect their attendance? what if they're an international student on a visa and need high attendance to stay in the country? there's a million soft access issues that are present even if the bare minimum of basic access (can i get inside) is met. but yeah there's a ramp. so whatever i guess

[gleditsia-triacanthos]

To be clear, describing part-time wheelchair users as part-time is not an attack or form of shade.

Since I’ve heard people start using this term, I’ve heard a pretty much equal amount of backlash and indignation in response.

A lot of people are used to using the term “ambulatory,” and I think a lot of the negative response comes from the idea that “part time” is synonymous, and just holds a different connotation. The truth is that all part-time wheelchair users are ambulatory but not all ambulatory wheelchair users are part-time. Ability to walk or move without a wheelchair in ambulatory people is a huge spectrum, and the labels of part/full time just help to clarify level of reliance on one. People may be physically able to walk, but the safety and practicality of getting up out of one’s wheelchair ranges, and inaccessible environments can affect people with varying levels of wheelchair use greatly.

If you are part time and think that term may help you describe your situation, awesome! If you don’t think it’ll help, that’s also fine. If you are offended, though, by being described as a part time wheelchair user as someone who uses a wheelchair part time, it may be time for some self-examination.

[gleditsia-triacanthos]

Updates from ~month 3

1. I honestly can’t believe that’s how long it’s been. I feel simultaneously like I was walking around yesterday and like this is the only way I’ve ever lived.

2. Muscle wasting happens FAST. I’m in an MT program, and I had ballet legs when I developed CES. You wouldn’t guess it now. I think I quite literally have half the amount of leg I did in December.

3. It’s still taking a second to bond (?) with my wheelchair. I figured out wheelies and got my backrest lowered, which helped, but I still prefer the floor when I’m at home/my dorm/friends’ houses. I had to log off for a second and tackle my relationship with my wheels alone, because socials only really show extreme takes on wheelchairs (either “oh god I hate it” or “I love my wheelchair”) and I felt like I was going crazy.

4. Self-catheterization is still not for the weak.

because i’m a listmaker and this is still insane to process, considering making this a series.

wisdom (?) from day ~3 of paraplegia

1. don’t fuck with your back. if something’s wrong with your back (or neck), tell a doctor. do not thug it out. this sentiment 10x if you have an hctd.

2. those hospital wheelchairs? the folding kind? not good for shit if you can’t walk or stand. those are point a -> point b transport and that is it. kind of knew this from my previous hospitalizations, but it’s definitely more relevant when everything but your legs are healthy and functional enough for walking (translation: i’m in bed 90% of the time now even though i feel more or less okay, it’s maddening).

3. self catheterization is not for the weak. will not elaborate on this one purely for my own privacy, but i’m absolutely not going to pretend that incontinence isn’t something i (and many other people) am contending with. hug your incontinent friends.

4. the big things start to matter more, but so do the little things. did i cry when my best friend drove two states over when i called? most definitely. did i cry at the possibility of having to replace my jeans collection with adaptive pants (we’re fine on this front, i tested it this morning. it takes forever to put on pants independently, but it’s not impossible)? yup! i’m probably learning some kind of life lesson right now, but becoming (in my case more) disabled does not make you less human, even for the better.

[gleditsia-triacanthos]

Chronic illness/disability contradictions are so insane. You can’t do anything right.

If you talk openly/copiously about your health problems, you’re whining, you want attention, you have a bad attitude, or you’re a professional patient.

If you don’t tend to discuss them or you manage them well in public, there can’t actually be anything wrong with you and you’re totally fine.

Since my disability became visible, I wondered if people would lay off, but I’ve reached the conclusion at this point that some people will truly never give it a rest.

[gleditsia-triacanthos]

Really hope OP is okay with me going in this direction, I think this is a huge issue within the EDS community particularly. EDS is a diagnosis that ranges from non-disabling to fatal, including every in-between. Fourteen distinct conditions are grouped under the umbrella of EDS. I see so much of the sentiment above going in both directions, the “you’ll be fine, you just need to try harder in PT, I got back to running so you can too,” and the “You don’t need braces/a cane/a chair, you’ve never had a surgery, you can’t touch the back of your hand with your index finger, so you must not have EDS.” It affects your entire body. There are about as many different manifestations of EDS as there are people with it. Cut it out.

Disability is such a spectrum and I don't even know if you could truly say two people have the exact same ability level. That's why the whole "I can do this why can't you?" line that a lot of disabled ableists push is so frustrating. Babe, they can't do that because they don't have the exact same set of circumstances in their life and body that allows you to do the thing. There's a lot of varying ability and access within a diagnosis and just because you can do a thing with your diagnosis doesn't mean everyone else with that diagnosis can too.

[gleditsia-triacanthos]

i only just learned that there’s an ongoing debate about whether ocd is a form of neurodivergence, and i thought i’d put in my two cents.

yes.

on tumblr, i could be totally preaching to the choir, but ocd is no longer classified as an anxiety disorder per the dsm-5, and the continued misunderstanding of it as ‘worrying about silly things’ just hurts people with it. i feel like the culture has recently begun to drift away from the idea of ocd as perfectionism and toward a still-inaccurate interpretation of it as severe anxiety. this risks becoming a totally different post at this point, but i’ve noticed that leading to a lot of underinformed acquaintances (even sometimes therapists) recommending ‘mindfulness’ exercises that are literally. terrible for ocd. they are structured rumination. and people still don’t understand what ocd is.

your thoughts are organized in a fundamentally different way from people without it. it is a difference in cognition and processing. which is neurodivergent.

[gleditsia-triacanthos]

i hate being reminded that i’m not immune to getting Normal People Sick.

[gleditsia-triacanthos]

there can be more than one issue, and i think there is in this case. i think it’s an issue that able-bodied people view disability/wheelchair use as inherently tragic AND i think it’s an issue that disabled people for whom wheelchair use isn’t a happy/pleasant thing get pushback from their own community. my original post (and echo’s repost) was more concerned with the latter.

anyone else feel just ‘eh’ about their wheelchair?

i feel sometimes like the classic online phenomenon of “oh this incorrect idea is most dominant so we should spread an equally extreme opposite idea” has taken hold when it comes to wheelchair use.

i think the whole “oh, i’m so sorry you’re CONFINED to that wheelchair” routine, while almost always well-intended, is stupid and not particularly comforting. i also think that never acknowledging the DOWNSIDES of wheelchair use, and that it’s often shitty and frustrating, is unhelpful.

does my wheelchair make my life a lot easier? fuck yes. i don’t exactly have mobility alternatives, but it’s this or what can only be described as scooting. can it be uncomfortable and do i need breaks from it often? also very much yes. am i at a place yet where i’m 100% comfortable with the loss of function in my legs and the fact i even need one? no! i might get there someday, or i might not. that’s okay!

if you are reading this and feel like your wheelchair was the best thing to ever happen to you, i love that! this is just hopefully to add some balance to this conversation.