About 3 months ago I noticed something odd: when I chewed something hard on the left, my preferred chewing side, it sometimes caused a piercing pain that went right down my backmost lower left molar. So I went to the dentist. I have a nice dentist. When I went to see him for the first time, I was wearing my sunflower lanyard, and he asked me what invisible disability I was wearing it for. When I said I was autistic, he asked me how he could accommodate me, and I said I was very light sensitive, so I'd be wearing my yellow protective glasses during our session. He didn’t raise an eyebrow, and he did make sure that the terrible light dentists usually blind me with was pointed at my mouth, not my eyes. I never realized that was an option! Mind = blown! And also, before each step, he told me what he was going to do and the kind of noises and tactile experience it would cause. The guy’s a total gem 😻 (is what I think about what should probably be just standard practice in an autistic-friendly world).
So when I went to him with the weird intermittent tooth-ache, he knocked on the tooth and blew some air on it, warning me in advance and then asking me what it felt like. I said it was nothing compared to eating a nut with that tooth. He took an X-ray, and showed me the image on his screen. There was nothing there. So he said he thought it might be a gum inflammation and sent me home with some specific mouth-wash. He said to come back if it was still going on in a month or two. I did the mouth wash routine he recommended, which my gums did appreciate, but to no avail, toothwise. So 6 weeks later I was back in his chair. He looked at the X-ray again, repeated the whole tapping, air-blowing, gum-checking routine, and told me that he couldn’t see anything, but would I please get a longer appointment at the desk, and come back for him to remove a filling I had on that tooth, so he could look under it. I did that, and two weeks later I went to that longer appointment, where he took the old filling out, and to his utter astonishment, found a massive cavity going straight down, on the next tooth over where the two teeth met. He told me he was shocked that such a large cavity hadn’t shown on X-Ray, and went on to perform the necessary two fillings.
I thanked him for not just sending me home because the cavity hadn’t shown on X-Ray. “Not every dentist would believe me something was actually wrong and start digging around in there,” I said. He then confessed that if it weren’t for that old filling indicating something had previously already been afoot over there, he would have in fact sent me home without treatment. Had he done that, the cavity would have no doubt turned into a root canal. I know, because I have two of those from when teeth just didn’t hurt that much until the damage was already too bad for a filling. I guess my interoception of tooth cavities just isn’t the same as other folks’. I’ve also been known to walk around for a month with bone fractures orthopedic doctors couldn’t see on X-Ray. And to be sent home by medical professionals who just didn’t seem to be able to figure out what was wrong with me. And this is what the 3rd episode of my podcast The Autistic Rant Hour is about: Medical Gaslighting. Or as I like calling it: We’ve Run All the Tests and there’s Nothing Wrong with You.
In this episode I’m joined by Simo_tier (pronouns: it/they), a multimedia artist and activist I got to know on a local queer autistic meetup it organizes. Together we share some anecdotes about all those times we went to the doctor only to be met with disbelief, ignorance, discrimination and sometimes plain incompetence. We discuss the notorious pain scale, misdiagnoses, missing tests and wrong prescriptions, compounded discrimination of multiply marginalized patients, and the real life and death outcomes of everything autistic people have to endure when seeking medical services, including that moment when you just can’t deal with it all anymore, and don’t even seek those services.
I’d love to hear from you about your experiences with medical care, and whether you have some autistic life-hacks that make things better.
You can find The Autistic Rant Hour wherever you get your podcasts, or see here for links, player and transcripts: https://prepped.to/podcasts/autistic-rant-hour
#ActuallyAutistc #MedicalGaslighting #misdiagnosis #DentalCare #Podcast #Podcasting