Another backlog post from December 2023, because I forgot it was in my drafts. Oops.
Content note for medical/surgery things:
Once again, I recently had surgery to revise my sacral nerve stimulator. Turns out the battery somehow managed to flip sideways – which was not pleasant. Other than being allergic to an adhesive, the operation was a success! For the most part, everyone was very respectful and accepting of my communication needs which was wonderful.
However, there was one incident that I keep replaying in my head.
Lying in the pre-operation area, I was given antibiotics prior to the surgery through an IV – in my hand. I already go for infusions once a month; the placement is not something new for me. That said, it’s very much not sensory friendly and movement can be uncomfortable.
One of the nurses was tapping on my hand to fix an IV issue and naturally, I flinched. Perfectly normal and automatic response, right? I didn’t say a word – but the nurse did.
“Oh, that didn’t hurt! It just scared you a little. You’re fine.”
Of course, I insisted it hurt – because it did. It wasn’t enough for me to cry or complain about. I simply winced. I tried to explain that my connective tissue disorder just makes the skin a little more fragile.
“No, it definitely didn’t hurt. You’re fine.”
And I insisted again – only to met with the same response.
After that, I just sat there and cried.
It wasn’t because of pain, but because I felt unsafe.
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The nurse had ignored me earlier as well, when I tried to hand him my medication list. He insisted that my caregiver tell him what meds I was on.
His reasoning: “I want to make sure I actually get these right.”
The feeling of not being believed stayed with me for a while. It just felt so condescending – and as if anything I said could be dismissed.
What if the vein had blown? What if I was having a pre-seizure aura?
Would they have taken me seriously?
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This is the norm for many autistics. Our pain is minimized or ignored, because others don’t understand that sensory input can be so painful.
The clothing tags that feel like needles, the overlapping voices that give migraines, the hum of the florescent light that makes it too bright to see. A place that should feel healing and safe becomes the exact opposite.
And to be dismissed and underestimated?
That’s even more painful.
Just Keep Stimming 