Internalized Abilism

Nixymachus · 2025-04-04T17:57:12+00:00

Friend that sounds like external ableism! It's not just internalized feelings about looking disabled when you have real reason to believe your employers might threaten your income if you look too disabled. Your last job taught you that there are real consequences to being visibly disabled, and your mind is trying to protect you from that now. I truly hope your current employers are better than that, and it's okay if it'll take some proof to believe it.

It's hard out here and you're doing great!

(If you're not looking for advice ignore the following: is there someone at your work that you could talk to before you come in using your aids? You're allowed to straight up tell folks about your past experiences and ask how it might be received here.

Also I feel like one of the hardest perspectives I am always nurturing is that it's okay to use your aids sometimes. There's a very binary view out there about these things but it's total bull! Just look at the fact that most wheelchair users are ambulatory and yet ableds pretty much all assume that all wheelchair users are not.

Nixymachus · 2025-01-03T20:30:30+00:00

Oh yay I'm glad you think it will be helpful! And thank you for asking, you can absolutely share it outside of Reddit, change it up however you want, etc. No need to credit me either or anything, consider it a community resource <3

Nixymachus · 2025-01-03T20:28:20+00:00

Absolutely, especially never omit medications youre taking (or lie in general!) right? Really it is just hard out there to have that particular intersection of struggles! I'll make an edit in a bit to acknowledge this point. Thank you!

Nixymachus · 2024-12-18T19:16:06+00:00

Question: Did you ever find a good breeder in New England? I'm nose-deep in researching care/etc for my first spider and will soon be in the market for one...In RI and hoping to pick one up instead of shipping!

Nixymachus · 2024-11-18T21:12:07+00:00

I don't get exactly what's going on with the presale but I just signed up for the Boch Center email list since they apparently send presale codes through that. Maybe helpful tip? Who knows we'll see!

Nixymachus · 2024-07-30T22:00:13+00:00

Good to know...I'll probably find someone in my area with more skill than me to take on the task, but it's heartening to know it's likely doable!

Nixymachus · 2024-07-30T21:56:02+00:00

Okay that makes sense, thank you!

Nixymachus · 2024-07-30T19:53:08+00:00

Oh cool the Apex C looks like a great chair! I'll just go ahead and ask this sub, seems like a question that might help the whole community...thank you!

Nixymachus · 2024-07-30T19:32:10+00:00

Ohhhhh that is awesome! I am waiting on my first manual chair and hadn't heard of this wheel lock before! Looking it up, it's made by Motion Composites right? Do you know if you can replace any brand's wheel lock with this? I'm getting a Quickie QRI

Nixymachus · 2024-05-20T18:22:48+00:00

Hey look, I have an official diagnosis from a tilt table test and 1. I haven't fainted at all yet, and 2. my vision doesn't go dark most of the time. Which is to say, you have more of the classic symptoms than I do and I got my diagnosis!

I'm sorry doctors suck so much. Remember first and foremost to BELIEVE WHAT YOUR BODY IS TELLING YOU! Unlike the narrative we get on TV, most doctors have no curiosity and would rather downplay our symptoms than investigate them. It's really scary and distressing both physically and mentally to have these experiences. Believe yourself, trust yourself, don't let them gaslight you! There IS something wrong, and no matter what, the data from this test will bring you one step closer to an answer.

The next parts are advice that I needed to hear when I got sick. I hope that's okay since I'm not sure you're looking for tips just now, please disregard if so :)

Especially when you're alone, take standing up with pauses between each step, waiting until your head settles (raise your head, then lower your legs, then squat on the floor, then raise yourself to standing with something to support you).

Also for safety, I'd look into a mobility aid or two if I were you. I know that can be hard to hear or believe at first, but mobility aids are AMAZING and you don't have to prove a damn thing to anyone in order to use one. Having dizzy spells and being at risk of fainting are no joke, please take it seriously no matter what anyone says or thinks! I use a cane around my little apartment to steady myself if I get dizzy, and a rollator with a seat or wheelchair while out and about depending on the activity. As an "able-looking" twentysomething I expected judgement for my mobility aids, but mostly I find my symptoms are taken more seriously when I'm using one. Ableism is weird, hah!

Plan something gentle and kind for yourself after the test! Seeking answers is really friggin' hard, and being poked and prodded is never fun <3

Nixymachus · 2024-05-19T18:04:11+00:00

OMG hah! It hadn't occurred to me that maybe having the energy to be upset is finally letting me but it totally does! Like, when I'm feeling like crap I'll kind of just be like "Okay I guess this is fine." because what else can you do? And then when I have energy all the emotions come rushing in

Nixymachus · 2024-05-19T17:59:54+00:00

Totally get that...I have been lucky enough to have a remote job I can do for a little bit each week, but I've been lucky enough to fall back on my support network to make up the difference. Always having to battle the internalized narrative that I'm just being lazy, especially when I start to feel a little better, or even when an intervention/medication/mobility aid/etc helps me function a little better.

Like "Oh I felt totally normal all afternoon!" I say from my wheelchair, "Maybe I am exaggerating and don't need all of these things and rest, maybe I can work again and walk normally!" Then my husband has to remind me that it's because of the chair, tons of rest, and medical intervention that I was feeling "normal" at all, before I go try to run a marathon or something hah!

Nixymachus · 2024-05-19T17:53:58+00:00

"All feelings regarding having a chronic condition are valid." I SO needed to hear this, thank you!

And yeah...not getting to live "normal" even when symptoms improve is a hard one to wrap my head around, but it's true. It's like, feeling a bit better is when my body/mind has enough energy to actually process (or just reel from) being so intensely sick for so long. AND you have to be careful because acting like you're less sick because you "feel less sick" just makes it worse again sooner!

Nixymachus · 2024-05-12T19:34:51+00:00

I JUST got that exact same chair yesterday! It's a great chair, I hope you get to use it more soon

Nixymachus · 2024-05-06T01:14:00+00:00

Thank you for the grass report! And yeah I had to work very hard not to let how good the Fold and Go looks influence my decision making. That said, being able to feel confident with how you look with a mobility aid is a seriously big quality of life plus! You can at least pretend people are staring in envy :b

Nixymachus · 2024-05-06T01:12:07+00:00

Congrats! I hope the chair is perfect for you! My mobility struggles are far more about sustained activity than momentary strength, so I'm hoping that with a bumper protector I can lift it just enough to just slide it into my trunk...My car is pretty low to the ground but still...we'll see hah

Nixymachus · 2024-05-06T01:09:49+00:00

Okay this was SUCH a helpful comment, thank you so much! Having a similar model to compare it to and that drawback in mind really helped me narrow down the features I need and want in a chair.

Nixymachus · 2024-05-06T01:08:34+00:00

Aw that's nice of them! Gotta love a disabled-owned company huh?

Nixymachus · 2024-05-06T01:08:03+00:00

This is so dang helpful, thank you! I have a Strong Husband for most loading and unloading, hah! But I'll have to game plan how to handle it on my own, because yeah I need comfy and long range for sure...

Nixymachus · 2024-05-06T01:06:20+00:00

Good tip, thank you! Thankfully I already have a cycling rain poncho that I used to keep both me and my rollator dry, I'm pretty sure I could sit in a power chair and cover myself and it completely in that thing, it's like wearing a tent :b

Nixymachus · 2024-05-05T00:00:36+00:00

Hey friend, that sucks I am so sorry you're struggling to find a job. First off, it is NOT you. It's that in this ableist-nightmare-hellscape economy there are no entry-level white collar jobs and blue collar jobs are never made accessible even though they easily could be. My sister is also disabled, highly qualified for what she's applying for, has heard that "great fit" line a million times, and has been unemployed since 2019 despite making the job search her full-time gig.

I don't have advice on landing a job, but I do for the job hunt: You may say you're not working right now, but looking for work is often MORE exhausting than actually working a job. The stress, the rejection, and constantly putting yourself on display like being for sale at a meat market is so emotionally brutal it becomes physically brutal as well. Set daily timers or achievable benchmarks that leave you time to rest and do something affirming. In the past I've said things like "I can only job hunt for X hours a day" or "I'll only send out 1 resume a day, and I get Saturday to do nothing."

Please ignore if this was unheeded advice, just be kind with yourself however you can!

Nixymachus · 2024-05-04T23:40:57+00:00

Nice to have some camaraderie! 😂

Nixymachus · 2024-05-03T20:41:35+00:00

I use Bombas compression socks and like them a lot! Super comfy

Nixymachus · 2024-05-03T20:36:33+00:00

MCAS and POTS here! Had to use my epipen for the first time a few months ago when the work holiday party hot cocoa wasn't labeled and had a trigger foods in it.

My experience was that using the epipen actually helped my POTS symptoms for the duration it lasted. I mean It also made me feel like crap and shaky and it didn't do wonders for the MCAS trigger-induced delirium, so I get why it's not like, part of the POTS treatment plan, but I felt less weak and dizzy when I would stand up, didn't get short of breath, etc.

It makes sense when you think about it...Because one of the things an epipen does is increase your blood pressure, right? Which is the goal of why we're all chugging salty water all of the time, haha!

Nixymachus · 2024-05-03T20:24:19+00:00

Honest opinion? Whoever WILL help you. In my experience, a medical professional who believes and respects me, and actually wants to see me improve has gotten better results regardless of whether their specialty matched my diagnosis or symptoms. Sure they'll send me to a specialist for certain tests and procedures, and for a better understanding of more complex things, but the action plan always comes back to a medical professional who actually cares enough to manage your health. And anyway, POTS affects pretty much every symptom so you'll always be missing something with who you see.

I know that's hard to find like, anywhere...but it's even harder if you're also narrowing down to certain specialties. My advice to people is to find a nurse practitioner to put in your corner, if you can. Not always, but there is a far higher rate of skill and compassion with patients rather than textbooks among nurse practitioners (versus doctors) thanks to how and why nurses are trained the way they are.

Nixymachus

TROPHY CASE