Yesterday I met for the first time with a new primary care physician since I’m moving my whole life closer to my job and school. It’s not a big town. He shouldn’t see too many patients. He does get some from Decatur and Mattoon, but his office is a subset of those located in the small town where I work.
My medical records and the paperwork I filled out specified that I have 21-OH-LOCAH. My reason for appointment was pre-slotted as “hormonal health,” because I wanted some general up-keep on my CAH as well as I’m getting past the point of damn tired with the agony of what periods I am able to have and may have endometriosis, on top of which I developed very painful breast and armpit lymph nodes the size of grapes with a family history of breast cancer and predisposition to it from CAH. So to keep things sweet: Hormonal health.
He’s got results of several prior blood tests that were to help track my CAH. He must’ve seen them or at least skimmed them while I was going through my intake. But when he came in to ask me why I was here for hormonal health and was seeking help for irregular, short, and painful periods and possible endometriosis, I told him I have excessive hyperandrogenism.
“And what makes you think you have that?”
Bro, I have CAH. It is right there, in my documents. All of my blood test results are in your hands. You can read the T vals right there. I assumed he did know that, so I started to point out certain things about me: I have very oily skin and a blisteringly red face with cystic acne, very muscular body type, underdeveloped breasts, I am at least half a foot shorter than all of my family members, periods are very off-tune, short, and painful, I’m hirsute, etc.
“Sometimes we just assume things to try to make an understanding of what’s going on with ourselves,” he tells me. I get motioned up to the exam bed for the general stuff: looking in my ears, stethoscoping my lungs.
And he gets to feeling the lymph nodes under my jaw. And just. He takes on this look of encountering an issue and his hands stop. Then he puts his hands around my jaw and starts circling his thumbs over my lower facial skin.
“Has anyone ever told you you have very prominent rosacea, and it feels like you have a substantial amount of terminal hair growth budding in this area?”
“Yeah, I shaved this morning. I do every morning. The skin may look clear but feels rough by the end of the day.”
After the short general exam, I go back to the chair and he goes out of the room to look at my paperwork for a minute. He comes back in and sits down next to me looking like he’s about to diagnose me with cancer or some shit.
“Ma’am I don’t want you to be afraid but there are some anomalies in your recent blood tests.”
I give him this unamused “yeah” because it’s like, we should know what this is by now my man. The name of this disorder is written right there in all of the paperwork.
He goes on to explain that the gonads produce most of the body’s sex steroid, but the adrenal glands produce about 10-15%, and asks me, “Do you know what adrenal glands are?” Then starts telling me about the different layers.
I just flat out interrupted him. “21-hydroxylase deficiency. That’s what you’re leading up to.”
He says yes, then continues to describe cortisol and testosterone and low cortisol can blah blah blah.
“CAH. Adrenal hyperplasia.” I keep flatly fucking repeating this shit because at this point it’s just. You have a limited time with me. Don’t sit here and diagnose me with something that was diagnosed years ago. I am here seeking new answers for new problems.
He catches on at some point that I’m saying, yeah I know, I have that, and he turns tones. He goes on about how we can’t self-diagnose anything and we need actual solid numbers–despite having my blood tests and medical history with the diagnosis–and I will need to go see a specialist. I insisted I’ve already been diagnosed, it’s in the papers, the numbers are in the blood tests, I’m here for something entirely different, can we move on?
“Do you identify with something other than your ‘assigned’ sex, or whatever you would call it? It says in your intake that you were on testosterone for five years.”
I just. Fucking. It came out harshly like, I’m a biological female with 46, XX chromosomes, a female phenotype, a normal ass GNC homosexual woman who was transitioned at 13 to 18 because of what other people forced into my self-hatred over being homosexual, GNC, and having CAH.
And this dude’s world fucking changed. He looked like he was going to goddamn cry and profusely apologized about how sorry he was to have assumed and brought up the scars of that transition that was put on me.
This dude thought that because I look like a gender-trender I was some intersex-larping trans person and that mooted the diagnosis in my paperwork and the physical exam that he felt my facial stubble in because he’d seen so many time and time before that he was used to them trying to force CAH diagnoses and thought I may have actually managed to force a diagnosis for my own validation. This doctor who has only ever worked in this small area of central Illinois has somehow seen enough trans intersex fakers going off the damn wall trying to screech their way into validating a self-diagnosis that my real diagnosis was fucking ignored.
He says he’s never met a patient with CAH and has only ever read about it in infants while in medical school, and is so sorry for having made this first interaction with one based around other people’s lies about my disability.
Thanks to the sheer number of intersex fakers and how asswild you pieces of shit get in your larping, it’s hard as hell for us actual intersex people to find doctors. I’m trying to set down roots for my life in a new place and immediately my relationship with a new doctor caused us both to go home feeling horrible and having a depressing first interaction because he’d seen so many of you fakers before that he just expected more and more to come. I had to put down a copay for an appointment that didn’t even turn out to accomplish what I wanted to be seen for because the entire time was spent on this shit and he’d run far past the time for the next person to be seen.
This guy is genuinely caring, I know it. He’s not the bad guy here. I just want you people to fucking think about it before you go claiming to be intersex for fucking Valid Cool Freak Points on the internet or in your school groups or at the doctor’s office because your lies make it harder for me to find answers and safety for my truth.