Monday, March 19, 2012

Coming Clean to Clinicians: An Update

Hey, ya'll. I had recently decided that I'm sick of not being forthcoming with my intersex to health professionals, and am not going to do it anymore, as I detailed in a recent post. My previous experiences were pretty uneventful, with me explaining that I don't get my period to nurses or doctors, or literally writing, "I don't get my period," on the "When was your last cycle?" part of the medical forms. No big deal. It was even kind of easier than I had thought it might be!

So, I was feeling all confident, until I went searching for a new general practitioner (GP). Upon doing so, I've unfortunately had a few uncomfortable experiences.

The first part of my visit was the same. Sit down, fill out the forms. Draw some arrows and cross stuff out where appropriate to state that I don't menstruate. Fill out more forms, wait, wait, wait. Get called in, get your blood pressure taken. Wait, wait. Answer some questions from the nurse, as she fills out some forms. Wait, wait. Finally see the doctor. Answer some questions, suspiciously in the same order that the nurse asked them in. (Doesn't anyone read the forms you initially filled out?!)

At some point in reviewing my medical history, my prospective doctor kind of stopped. "So, it says here that you don't get your period. What is that?" I stopped for a minute, since the question was awkwardly phrased. Um, what did she mean? She must have met people that didn't get their periods before. This happens. "Um, yes, I don't." Pause. "Can you explain why that is?" "Umm, I don't have a uterus." Pause. "I was born without one." I felt that that was more than necessary to satisfy my writing I don't get my period on the form. No uterus = no menstruation. Easy, done!

The doctor had more questions, though. "You were BORN without one?" "Yes." "Why is that?" "Well, um, I'm intersex." Okay, I'd said it. I'd said the word. I waited to see what would happen. "So, uh, you were born, uh...what were you?" "I"m sorry?" "What were you when you were born?" Ohhhhhhhh, the doctor wanted to know if I was REALLY a boy or a girl when I was born. If the doctors had assigned me male or female. My heart sunk. "So, were you ambiguous? Do you have normal female genitalia?" I wish I had been in a mental place to think, "That question's obviously absurd! That's not medically relevant at all! I'm not answering that!" Instead, my mouth blurted out, "No. Yes, I do." And then the rest of the exam I just felt weird and zoned out, and I was terrified that she was going to want to do a check on my genitals to see them for some reason, even though she thankfully didn't.

The reason that I stated that I didn't have a uterus was so that I could explain why I would need prescriptions for hormones that I take daily. I could have never said anything referencing my intersex, could have made up some reason why I took estrogen that would have been entirely plausible, and went on my way.

But I think I deserve to be truthful in my medical history, like everyone else may be. The fact that I'm intersex shouldn't be something I should feel I must hide from my doctor. But it also shouldn't be something that I'm asked about when it's not medically relevant, which just serves to make me uncomfortable, when I've chosen to be honest about this (needlessly) sensitive subject. I very much understand why people just don't say anything about it at all.

It will be okay. I am glad that it wasn't worse, but I recognize that this still isn't acceptable. I want to talk to this doctor again, to let her know that those kind of questions aren't appropriate, that she should not ask inappropriate questions to other patients who happen to be intersex. Me, now? This isn't so terrible. I was upset and angry about it for several days afterward, but I know myself enough and understand enough how intersex is miscontrued in a medical context (= my body is fine, it's not disordered, any messages to the contrary aren't true) that I can bounce back. Me, a decade ago? I would have been deeply upset and felt awful about myself and wondered why I wasn't like everyone else. That I deserved the questions and whatever crappy feelings I had because, after all, who would really ever be aware of what this intersex thing was, anyway? I was not as resilient then, and am only more resilient now because I sought access to accurate information and other views of intersex besides the wow-you're-a-big-freak-BUT-IT'S-OKAY-YOU'RE-NORMAL-as-long-as-you-let-these-doctors-fix-you perspective. If I hadn't found this information, I am not sure what I would think of myself now. I'd probably just pray I'd somehow be convinced I was a "normal" girl after all, but feel awful inside.

And now I know that's not true. But that middle school kid in the doctor's office? Might be much more hurt and upset by a doctor's curiosities. That middle-aged adult that is still hurting so much they can't have conversations about their past? Might have yet another scar to tend to. This isn't fair. No one should be made to feel like this.

I don't know when or how or even if I will talk to this doctor again. It is much easier to talk about intersex in front of a room of people that are there to learn about, explore, and discuss intersex, than it is to directly engage someone who said something stigmatizing about intersex. Even now, it's hard to say, "Hey, that's actually not accurate," or "Actually, intersex people/bodies aren't necessarily like that." It is a process that, like everyone, I'm still working on, and it's not always easy to do, although I'm becoming much braver at it with regards to intersex. All I know is that as more experiences occur such as this one, the more I am reminded how important it is to have conversations about intersex, to acknowledge it exists.

I want to go to a doctor's office someday and know that I can disclose all the parts of my medical history and not feel strange about it, not feel like I need to choose between honesty and hiding. It is ironic to me that since intersex has been misconstrued as a medical issue, that more doctors are not aware that intersex exists, and they are not adequately trained or prepared to talk with intersex individuals who come into their practices, looking for basic medical care like anyone else. Maybe it won't happen soon, but I hope to fill out my medical history someday without wondering if I'll get asked shitty questions, if I'm going to have a uncommonly bad rest of the day simply because I had the absolutely common experience of going to the doctor. When that day comes, it's going to be a good day.


  1. Since my body isn't just like yours I've never had any experiences that might allow me to say I "for sure" understand. Yet, you are a good writer. You describe things well and in any case, all I can do is try my best to understand. I am much older than you which I think means that my greater experience on the planet gives me some useful insight even for you. So here it is. You can control these encounters by writing to doctors first. If you don't like ANYTHING about the replies you get - don't go to them. That's what I do. Doctors speech patterns are built upon an idea that YOUR body and health actually BELONG to them. So it can be hard to communicate with them. That's a problem with doctors, not with you. I face the same problem. Next point: If you ever have to disclose your AIS to anyone, do it, and assess the level of their knowledge/ignorance. Use that to understand their reaction and to assess their behavior. People can't always help their ignorance. They must always choose their behavior. Doctors have heightened responsibility in this area. You are the expert on living your own uniqueness. Don't hesitate to let them know that fact. How they deal with that lets you know whether you can work with them.

    You do a lot of wondering what others will think of you (of course). Try to let that go, a little bit. Truly, I can only imagine what the implications might be for someone to live in a community where letting the genie out of the bottle might cause long-term effects. So, if I'm wrong on that basis, sorry, I just don't know.

    But because you work so hard to "smash this shit down", it seems to me that you should control their reality with your words. Something like, "Hi, before we begin, let me ask YOU a question. What do you know about AIS? If the answer is "Nothing" or "Not much" or "What is that". Then give them a handful of pamphlets and tell them you will re-schedule your appointment when they are up to speed". Thank them for their time, get up, and leave. Be sure to include one that makes it clear it is not a "medical condition".

    My feeling, again as an older friend, is protective. You shouldn't have to have these feelings and you wouldn't if I were the doctor. There's no excuse for a doctor to not be informed. But, so many people are uniformed, right? So, the most positive thing to do is be the teacher you already are with this blog. As always, I hope I don't go too far with "advice". Just my opinions. Thanks for the blog.

  2. Hi, jisbell! Yes, certainly not caring as much what people think would help, but it's not always easy to be assertive and talk about intersex with clinicians when you're used to interacting with clinicians about intersex predominantly (or even exclusively) negative ways. Being in a situation when you're with a clinician who is not aware of what intersex is and asks invasive questions can take you right back to a place when you were scared with doctors before, and it's not easy to talk.

    Learning to be honest and assertive about intersex with other individuals is a process, because it has been ingrained for so long that nothing you are is okay, and it's weird, and no one will understand you, so don't even try. Even though I know logically that I am okay, and I'm not weird (or rather, I am, but not because of my intersex!), and others will understand me doesn't mean that in a sitution where messed up stuff happens or I'm uncomfortable for any reason, I freeze and don't want to talk about it. I will get better as I get more comfortable doing this.

    Thanks for your concern. I hope you are doing well!