Thread by @AutSciPerson

A day in the life of a disabled person seeing a doctor.

Act 1.
I need to wear socks with my shoes because it's cold out and I might have to take my shoes off. This means my foot band isn't going to be as helpful and my venous malformation could hurt more. I'm worried.

1/12

I cut off part of a sock so that my feet don't feel smashed into my toe shoes (which are the only shoes I can walk in without substantial pain). Seems to fix things. I worry about finding parking close enough to the health center.

2/12

Act 2.

I drive there worried my foot will hurt from driving with the sock + shoe combo. I look for disability parking. I see a close-ish spot & go around the block, only to find it taken by another car. I park far away but a manageable distance (might suck on the way back).
3/12

I go into the health center, check in, wait for my appointment, things are fine, no one assumes I can't hear them with my headphones on.

Act 3.
Doctor going over questionnaire:
"So I see you put "No" for exercising? We recommend 180 minutes a week of exercise."

4/12

"You could go running just 5-10 minutes a day."

Me: I have a foot disability, I can't run. [it was in my chart.]

"Even just walking 20 minutes would be good."

Me: I literally cannot do that. I can do crunches but that's about it.

"We want to get your heart rate up."
5/12

Me: I go biking but I can't do that in the winter.

"Even lifting weights or upper arm strength would be helpful."

Me to myself: I have hypermobility and was told to only use elastic bands and not traditional weight lifting, which wouldn't raise heart rate.

6/12

At this point I can tell the doctor has a sort of tone of "Why can't you just agree with me and then we can move on" sort of thing but no, sorry, I'm not doing that today.

I start crying (controllably this time) and the doctor changes the subject.

7/12

The doctor notices I'm crying and asks me why, and says that they didn't "want to" upset me.

Me: It doesn't matter whether you wanted to upset me or not.

Doctor asks why again.

8/12

At this point, I know it's not worth explaining, and for some reason what comes out of my mouth is "You know I'm autistic, right? It's in my chart?"

Doctor: I didn't know that. But I don't understand how that's related.

My tears end, we move on, have the appointment.

9/12

I can't believe my autistic self a week ago decided to quickly put "No" on that exercise question without a thought. How dare I complicate things. ><

I even said "Well I thought exercise meant running specifically" but that didn't seem to get through to the doctor either.

10/12

I forgot how exhausting it is to be disabled, trans, -and- autistic. What a combination. The rest of the appointment was actually fine. It's not like this person was a bad doctor. They even didn't comment on my headphones.

But even the "good" doctor visits suck for me.

11/12

Epilogue

This same doctor at the very start reassured me that I shouldn't worry about accidentally making an appointment for "trans care" instead of "women's health" - which just made me feel worse.

Why not say "I'm sorry you have to misgender yourself to get proper care"
12/12

Oh, and I left out that the end of that conversation on exercise basically was the doctor saying "Well you know your body best." But then also suggesting things.

One was knee and hand exercises - and going from that position to standing is one of the Riskiest things I can do.

I'm realizing now - I think this person thought I was asking for exercises when I was just letting them know that I physically can't do the ones that were suggested.

I think it was another one of those autistic-allistic communication things. There were no lines to read between.

When someone tells me to exercise more as a physically disabled person,

I think of the 8-hour experiments I would do on concrete floors that involved nearly 4 straight hours of standing, and how much pain I was in just from doing that once every week or 2 weeks.

I think about how I sacrificed my own mental fortitude and well-being to obtain external validation and finish data collection, to be "successful." I think about how I told myself, this is just what I have to do to get this done. I think about how many resources went to my pain.

I think of the many times I waited for the shuttle because it took me so long to get a disability placard. I think about how people left me behind on short walks because I walk too slow. I think about how little I cared for myself and just did whatever I could to please others.

I think about how many days I spent in foot pain, went to bed with foot pain, woke up with foot pain, for no real reason other than to not feel like a burden to other people.

I think about how I walked for months with this permanent injury until touching my foot felt like nails

I think about the countless problem solving I had to do by myself, alone, because doctors gave me the completely wrong advice, which would've made my pain worse, not better.

I think about the fact that I need to make a new mold soon for my silicone foot arch as it's wearing down

I think about the amount of energy I devote to thinking, planning, stepping, walking, how vigilante I have to be to not wake up and have that stepping-on-a-nail pain.

And then I remember that no one around me has to do that, no one really understands, and no one really cares.

If that doctor wants the real answer to why I cried after being told to exercise more,

That's why I cried. Because I will have to explain this to every doctor, every human being, for the rest of my life, and they'll look at me and still say "I don't understand."

That's why.

Also I had to sit on a table that was (not surprisingly) not accessible, so my feet were dangling for a while. I have had a long ankle injury that I thought was like 95% recovered by now.

Me 7 hours later: My ankle hurts again. ><