Tuesday, July 6, 2010

Will Patient Disclosure Fuck Me Over?

Ever since I discussed the Hypospadias conference, I’ve been thinking a lot about doctors in general. One thing I’ve realized is that I have a peculiar relationship to all doctors – not just the ones who “treated” me for my intersex. I just want to throw these ideas out there to see if other intersex individuals feel similarly, because to my memory, I’ve never heard it discussed before.

I remember once in 11th grade, toward the end of the school day, I began experiencing really severe abdominal pains. I thought, “No, no, I’ll be fine. I just have to tough it out,” but I was worried. I knew it couldn’t be menstrual cramps, since I biologically can’t do it due to my specific form of intersex, complete androgen insensitivity, or CAIS. (I don’t a uterus, ovaries, Fallopian tubes – the works. It just never developed. See one of my earlier posts if you’re curious how this works.) I also knew I still had my appendix, and I had been worrying whether I would have to get operated on, since I saw several classmates make the trip to the hospital in the last few years. When the pain persisted for over a half-hour, I thought, “Ah, shit,” and called my mom to come pick me up. She arrived frighteningly promptly and broke the speed limit pretty much the entire way to the hospital. My troubles didn’t really begin, though, until I was already inside, in my gown, on the examining table, with a doctor present.

He did the normal poking and prodding and asking me if this hurts or that, and asking if I was pregnant (Doc: “Are you absolutely positive you couldn’t be pregnant?” Me: “Yes. Yes, doctor, I am.”). Then he said, “You know, you might have a problem with your ovaries. I think, to be conservative, we should do a pelvic exam.” I think my face probably turned white because I suddenly felt weak and slumped down a little onto the table. “Uhh…are you sure that’s necessary? Aren’t there other things it could be?” “Yes, it’s possible, but see, your appendix isn’t the problem. If it isn’t appendicitis, the most usual thing we see in young ladies (Me: *chortle*gag*chortle*) your age is something in the reproductive system.” I paused for a moment. I couldn’t think of any easy way out of this. It made sense, if what he said was accurate. “Um, uh, oh yeah. I guess.” The doctor smiled. “Well, okay then, just change into this dressing gown,” – he reproduced some itchy thing with no ass covering – “and then we can get started.” Get started…ugh. I needed to get OUT of there. Instead of changing, I called my mother in the room and frantically relayed to her what was going to happen. “Oh, no,” she said, eyebrows furrowed, “he is NOT going to do that. He can try other procedures, but we both know that’s clearly not the problem. He can do something else.” And then my mother talked to the doctor, and he reluctantly let me just sit on the examining table until I exhibited any other changes that might help him make a diagnosis. (There weren’t any – except one serious fart-attack. Yep, I had too much gas in my intestines, and it was making me feel like I was going to die. Also, yes, I AM extremely classy – thank you for noticing!)

All right, so what does all this have to do with intersex? He couldn’t examine my internal pelvic organs because I didn’t have them. So what?

My point is that I am terrified of new doctors learning about my intersex, because I’m afraid that if they find out, something bad will happen.

Part of this is how intersex individuals are conditioned to think and behave by the medical community themselves. I was always told that my intersex was private, secret, something I might be made fun of for. That people wouldn’t understand, and that it wasn’t something I should share with others. (What the majority of intersex individuals hear? Something like, “Your condition is shameful, so you should be ashamed of your condition and you should be ashamed of yourself. You are shameful. Keep your mouth shut and spare everyone the messy details of the freak show you are.”) We become so used to the idea that our intersex must be concealed at all costs that we withhold this information from other medical professionals. Almost every time I have had an appointment, I have always lied and said my last period “around the first of the month,” and that I menstruate regularly. When medics ask if I have been taking any medicines regularly, I have always shaken my head and said “Nope!” as brightly as I could, hoping they wouldn’t see through my lie. If asked if there are any medical conditions or extenuating circumstances they should be aware of, I never answered affirmatively. I am always afraid that if I disclose my intersex status, the doctors will demand a battery of tests be performed, or that they’ll decide to alter my genitalia after all, or that they’ll force me to see a gazillion specialists who will forever poke and prod me and erode my dignity away. In these situations, my mind conjures worst-case scenarios. I wonder, what if I don’t tell them I’m taking [pill]? What if they give me something that reacts badly with it and I die? I could’ve saved my life by speaking up. Or, alternatively, if I speak up, will a Bad Thing happen? I wonder, what if I don’t tell them I don’t have internal sex organs before surgery for something totally unrelated to my intersex? Would they simply question me about it when I came to, or would I wake up with an artificially elongated vaginal canal without my consent?

These scenarios are really extreme, and would likely never happen. I’m informed enough now to know that I have rights as a patient, and I’ve developed a pretty brazen personality that wouldn’t stand for such bullshit now anyway. But I’m still afraid, and I’m not convinced that variations on these scenarios – even if not as extreme – have not happened to other intersex individuals. Part of my fear, then, is also due to my mistreatment by the medical community. It’s been proven to me countless times before that not all the medics I’ve encountered are concerned with either my best interests or my consent. I’m reluctant to give medics any reason to suspect that I’ve got something they might think needs “fixing.” Alternatively, I’m afraid that if I don’t come clean, I might be leaving out information that will maybe negatively affect my health. In the vast majority of situations I don't think this would ever be the case, but it's still something I think about. On top of it all, I'm also just sad that some professionals we're supposed to be able to trust with our lives are undeserving of our trust, and so it's necessary to be vigilant to advocate for ourselves.

Do any of you feel similarly?


  1. I'm not sure how I feel. I need an ultrasound eventually to find out what's left of me under my scar. I mean, how do I ask for that? "Hello, it's possible I still have a vagina and maybe other things. Can you peek inside me and let me know?"

    Hopefully by the time I get ready for that I'll have found a good local physician and not have to go on another "vacation" for health care.

  2. Yes, this is definitely a difficult issue. Is is possible to seek out a trusted medic you feel comfortable with that might be more sensitive to you speaking plainly about your needs?

    I hope that your ultrasound experience is respectful and positive, and that your future vacations days are for REAL vacations only! (Like, the kind that involve lazing on the beach! Ahhh...)

    Thank you so much for commenting! :)