CW med trauma. please read if you've ever invalidated self-dxers who refuse to seek pro-dx. #ActuallyAutistic

by age 10, I was a frequent visitor to the hospital. from night terrors & hallucinations to being impacted, it was clear something was wrong. except no one knew what.

I hated the hospital with the exception of aquatic therapy sessions. it was always freezing, the lights were always bright, and the smell made my blood run cold. my mom knew this, but she also knew we needed answers.

the neurologist was an old, brusque man who didn’t really look at me or engage with me in any way. he acted like I wasn't there, not in a fully human capacity, at least. the pinpricks hurt, the light was blinding, and I was scared.

he ran his palm across my bony chest, clad in a blue cloud sweatshirt. I knew he was feeling for signs of early breast development, but I felt violated and nauseated by the act. he acted as though I didn’t have feelings, as though I was just an object. he could have asked first.

he ordered an EEG and an MRI. the EEG was supposed to be painless, but the bands kept tugging at my hair. it hurt. by then, I'd learned that most "painless" procedures aren't, in fact, painless at all. the adults around me never believed when I said I was in pain.

the MRI was another matter. I was strapped in and instructed to remain as still as possible. as the machine began whirring, I was gripped with horrible fear. I tried to calm myself, but the terror was overwhelming. I screamed for help, but no one came.

before the procedure, they assured me that they were watching from behind glass. they assured me that all I had to do was wiggle my toes and someone would come.

bullshit.

desperate and terrified, I wiggled out of the head stabilizing device, and I ran, barefoot, to my mother.

I refused to get another MRI, and seeing the state I was in, my mother agreed. whatever terrors were lurking inside my brain couldn’t possibly be worse than the procedure meant to find them.

due to my abnormal EEG, I was diagnosed epileptic & prescribed carbamazepine.

nevermind that I'd never had a seizure. nevermind that I had about a dozen symptoms the diagnosis didn't explain. I knew it was wrong. my parents knew it was wrong, but the doctor convinced them to give the medication a shot. so we did.

I HATED the medication, little orange pills with crumbly white insides. on a good day, they did absolutely nothing. on a bad day, they messed with my brain-bladder connection. I would go from not having to pee at all to “I’m about to pee my pants” in about 30 seconds.

what made it worse is that at that point, it was extremely difficult to pee. I would sit, bloated, in a warm sitz bath, crying in pain, until my body relaxed & I could finally pee. to my neuro, the pills seemed to be doing their job - I wasn't getting any worse, right?

since then and into adulthood, I bounced from doctor to doctor, receiving diagnoses of panic disorder, major depressive disorder, generalized anxiety and insomnia. they explained a facet of my experience, but not the entirety of it. not by far.

it wasn't until this year - I am in my THIRTIES - that a doctor saw the signs of me being #ActuallyAutistic . what did it take? oh, you know, just a complete collapse of my mental and physical functioning, including speech regression. that's what it took for them to finally SEE.

after they changed and then upped my of anti-depressants that did NOTHING, after I became nearly catatonic, that's when my professional diagnosis came. that's what it took. I am still trying to get back to my pre-burnout self, and I have a long way to go.

the whole point of this absolute Russian novel of a thread is simple: getting a pro dx is not easy, it's not cheap, and often the road to it is paved with trauma. many un-dxed autistics already grapple with medical trauma. to tell them they need pro-dx to be valid is BULLSHIT.

people don't need to have a pro-dx. people don't need to seek a pro-dx. people don't need to spend thousands of dollars out of pocket to be welcomed into the #ActuallyAutistic community, and to be valued, important voices among us.

THAT'S IT I'M DONE