I.Y.A would like to thank Kiran for sharing their story with us all today, in honour of International Intersex Awareness Day 2016...
10 ways doctors have told me I matter less because I’m intersex
This article contains mentions of cancer, miscarriage, parental abuse and major child sexual assault; read on with care...
1. “It’s not really something that needs to be talked about with the child.”
To this day, I’m not sure if my parents were told at birth that I was intersex. Looking back, I know that my genitals didn’t look quite normal, that my puberty was ridiculously early and pretty dysfunctional, and that my parents were absolutely obsessed with making sure I was “developing correctly”. I was measured, touched, examined and told never to let anybody else see me, ever; when I finally had my first period long after the rest of my puberty, my dad threw a party because he was so relieved I’d become a “real woman”. Those are my only clues; they didn’t talk about it, and even now, they’re still refusing to give me my infant medical records.
I don’t blame them for much, really. Asian new parents in a taboo relationship who had turned to Christianity to help process their own abusive families, they had internalized shame on several different levels even before having an intersex kid, and had no idea how to parent me in general. Sometimes, though, I think about how different it would be if doctors communicated clearly with my parents since my birth: your child is okay, here’s what you need to know. The huge shame they projected onto me about how weird and broken I was meant that I was particularly vulnerable to pedophiles, since I had already learnt that I was never to talk about my body. If I’d been told I was intersex and raised in an environment that was open and honest, I don’t think that would have been the case. When mentioning this to a doctor years later, she shrugged. Standard practice is not to let the child know, she said. It’s an unnecessarily difficult conversation to have.
2. “You can’t be intersex, you don’t look it.”
I found out I had congenital adrenal hyperplasia when I was in my teens and considering transitioning. Upon visiting an endocrinologist, he took one look at my blood tests and put his glasses down. “Your testosterone levels are really high,” he told me. “You don’t look like someone who’s been androgenized at all, so something weird’s going on.” He was more willing to believe that the labs had somehow made a mistake than that I was intersex – even when he acknowledged the results were accurate, he refused to do anything other than send me for testing for PCOS, which I very clearly didn’t have any other symptoms of. What he did however do was change my files in the national health database: I was now marked as both a fertile woman who needed pap smears, and as a man who had sex with men.
3. “I don’t want to know what’s going on with you down there.”
After becoming a sex worker, I became much better at understanding my body and my sexual health. One time, I went to a GP about a skin infection around my groin; he took one look at my medical records, and decided he didn’t want to know. “I’ll just give you some general antibiotics for three months, and we’ll see if whatever it is goes away. I don’t need to look at it or test it or anything. We’re done here.” And he sent me away, with a script for a drug that actually interfered hugely with medication I was already on. Yikes.
4. “Nobody really knows how this condition affects anything.”
It took me years to find a doctor who had ever worked with anybody else with CAH before, and even so she didn’t really have any insight to offer me. Congenital adrenal hyperplasia, she told me, affected a lot of things – because hormone levels influence pretty much everything from metabolism right through to bone density, she couldn’t ever be sure that any given issue I had was because of my intersex condition, or whether any of my medications would make things worse. “We’ll just wing it,” she said. “There’s no research about people like you living everyday lives.”
5. “Huh. The chances of that were pretty much zero. How weird.”
One year ago, I had a miscarriage. It was a messy, bloody affair that had me laid up in bed for over a week; instead of showing me the compassion that I can only hope they would have shown a non-intersex cis woman, doctors expressed amazement that an XX-chromosome person with CAH had at all managed to conceive with a trans woman with an extremely low sperm count, focusing in on how bizarre it was that I was miscarrying. I felt like a case study more than anything else.
6. “A hermaphrodite? Unlikely. Besides, it won’t affect this at all.”
The specialist who diagnosed me with ADHD is super Christian. The kinda Christian where he told me that the best support for ADHD was a personal relationship with Jesus Christ, after he already knew I’d been forced to run away from home when I was outed to my parents as queer. As you can imagine, he didn’t think much of my being intersex, or a sex worker. He wrote away all my identities and life choices as being due to “bad impulse control”, and prescribed me Ritalin without ever considering whether my adrenal condition would complicate things. To be fair, as my regular doctor told me, there’s absolutely zero information on whether it would – but he wrote it off without even looking it up as implausible and unnecessary. With most other conditions that are lifelong and affect hormones, doctors tend to be at least a little more careful.
7. “I’m not going any further until you can explain why your medical records look like this.”
If I had a dollar for every time I’ve heard something like this, I’d be a lot better off. Thanks to a name change and the choices of every doctor I’ve seen along the way, my records are a total mess, to the point where I’ve often had pharmacists refuse to fill my prescriptions because I don’t “look like a Mr and that’s what it says here”, or because “this can’t be supplied to non-females”. I’ve been quizzed about how and when and how often I have sex when going to a new GP to get a medical certificate for a cold. I’ve had doctors misread my records as suggesting I’ve had a hysterectomy, rather than that my uterus is pretty fucking weird. I’ve had specialists tell me they can’t see me because I would “make a mess of our database”.
8. “You just need a strong parental hand.”
One doctor, particularly unimpressed with my mental health records and the fact I was presenting with severe chronic pain (turns out I’ve got a nerve injury), decided that my claiming to be intersex was clearly a symptom of mental illness, and that I was also faking the pain I was in. The rest of that visit was a lecture about how I shouldn’t have run away from home, how girls like me always act up because we want to be special and don’t want to accept that women are meant to be submissive, how being a crazy bitch wouldn’t work for me in the long term. “Maybe your parents should have disciplined you more,” she muttered. “They beat me and sometimes starved me if I didn’t live up to their standards,” I responded. “Clearly you needed more guidance than that. I have no idea what this disease is you’re claiming to have. What bullshit.”
9. “I’ve never seen anyone like you outside of a textbook. How will you ever get a job?”
People as “different” as me, one specialist put down his glasses to say, need to blend in. I shouldn’t have dyed my hair, or gotten my nose pierced, or studied anything that wasn’t a traditional field like law or medicine where I would be respected for my skills. “You can’t just do whatever you want. You won’t get a job, and you’ll be a burden not just on the public health system but on the welfare system as well. You have to try to be normal. You’re way too open about your issues.”
When he found out I had a job, as a sex worker, he snorted. “Trust someone with a sex disorder to be sexually disordered”, he said.
10. “It’s precancerous, and that’s probably why.”
I’ve very recently been diagnosed with a precancerous genital condition. I went to get a regular sexual health test, and mentioned some prolonged pain and itching; the sharp-eyed nurse spotted a tell-tale patch of abnormal skin and referred me on for tests and a biopsy, which came back positive. Usually this condition only really happens to people my age if they’ve got HPV, and tests suggest that that’s not the case for me. “We have no idea what caused this,” the doctor breaking the news told me. When looking through my records, we worked out that the not-quite-a-tumor was located on an area of skin where my genitals are somewhat different from “the usual”, and which had been getting irritated from doing sex work as if I wasn’t intersex. Constant irritation and inflammation, as it turns out, can lead to this sort of cancer, but none of the medical professionals I’d seen up to that point had put two and two together.
I’m pretty mad about all of this. Every time a medical professional has written off something I’ve said or needed because I’m “too hard a case”, or “clearly faking”, or “there’s no research to suggest that’ affects anything”, I’ve been worse off because of it. This summer, I’m unable to work and faced with potential cancer and massive medical bills because I’ve been medically neglected for so long, and it’s not okay.
I have a Givealittle up to help with my medical expenses. If you’d like to donate or share, please do!