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#invisibledisability

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Kudos to I'm Autistic Now What on YouTube for highlighting this weird aspect to my disability but I have an extremely hard time navigating bureaucracy for my needs, particularly with getting medical assistance. There was a meme of someone having to jump through a ton of hoops in order to get assistance jumping through hoops, and holy smokes that is super relatable.

In order for me to get medical help I have to:
Actually successfully identify that there is a problem or maintenance need
Make sure my medical insurance information is all together
Make time during a work day, because they only are able to work with me during business hours, which is when I work, which itself involves blocking off time or discussing with my boss
Place a phone call with the medical office
Accurately describe my needs without sounding like a hypochondriac, translating my thought processes from autistic to non autistic
Receive an appointment or be told that I must fulfill some other requirement before I can get assistance
Loop the above until all requirements have been met
Stave off my anxiety and waiting mode until the appointment
Write down my experiences in a legible format because I will forget them if I don't do that and I will not be able to communicate my needs in the appointment setting ad hoc
Arrived to the appointment as a nervous wreck and check in
Sit in the waiting room and try to not look like an utter freaking weirdo to all of the non autistic people that are there, masking my activity so I can fit in
Continue to stave off my anxiety while I wait
Try to follow the medical professional to the right room, attempting to ignore the lights and noise around me that are bothering me
Present my written communication of my needs to the medical provider
Have to explain what I wrote, and go into detail
If I get pushback, fail to stick up for myself because I can't think straight in the moment
Fail to think of additional things I should have asked and then remember it 5 hours later and kick myself for it
Leave the appointment and have a meltdown in the car
Get charged through the roof even if the appointment was not productive

Note that this is not a cry for individual assistants, this is a cry for the system to change altogether

Sometimes I don't even take care of my needs because I end up having to do all of this and I don't want to, even if it's not beneficial or harmful to me

It's Disability Pride Month, but honestly—I'm angry.

I use the elevator due to Long Covid, and I still get comments like "Just one floor? Take the stairs." Mostly from older, white, male coworkers outside my team. My direct colleagues get it. Others? Not so much.

Invisible disabilities are real. I'm tired of justifying my needs.

If you've faced this or have tips on handling it, please share.

@longcovid
@chronicillness
@spoonies
@disability

Today I went for my first run in well over a year. I hope I will be able to keep it up. I used to do trail, mountain, and obstacle course races, but my health has made it very hard to pick that back up again. I have problematic feet. They are hypermobile with extremely flexible Achilles tendons. That means there is absolutely no bounce to my running, and every stride is strictly muscular. Tie that in with recurring Achilles tendonopathy, and it makes running almost impossible. But I'm gonna try to get my foot strength/endurance back. #running #hypermobility #AchillesTendonopathy #InvisibleDisability

*get into work*

*plan day, literally book entire day to do work with only a few short breaks*

*perform work*

*get exhausted, executive dysfunction starts to act up*

*coffee to shut executive dysfunction up*

*keep working hard through the whole day*

*leave work, caffeine wears off*

*huge bout of exec dys and possible shutdown*

"Why is this happening to me"