“hi, how do you handle being intersex when you go to the doctor? my primary care doctor knows that I’m intersex, but I never know if I should talk about it if I have to go to the school nurse, the ER, or see a specialist. do I have to tell them? does it matter if I don’t? thx”
-Question submitted by Anonymous
Claudia Astorino Says:
Awww, booooo, Anonymous—having to go to the doctor’s is never fun, but having additional needs on top of your medical needs isn’t always intuitive to navigate. When I’ve chosen to disclose aspects of my body that aren’t normative for women—or even to say that I’m intersex—I’ve had results that range from really positive to really awful (like, eat the whole pint of Ben & Jerry’s awful #chubbyhubbyforevs). Based on these various experiences, I’ve created a few rules for myself that tend to end up making my visits a bit more pleasant.
1) I only disclose information about my body that is (I think is likely to be) medically necessary. So like, if I have a sore throat and go to the doctor’s, it’s probbbbbbably highly unlikely that my XY chromosomes are the reason I’m hacking up a lung. If the reason I’m getting medical care CLEARLY has nothing to do with my being intersex, I don’t mention it.
Now, I’ve put “I think is likely to be” in this rule as a reminder that if I think that my being intersex might be relevant to my medical care, then it may be worth bringing up to my doctor. For instance, if my doctor may say something to the effect of, “Well, [health concern] is highly uncommon in women,” I may say, “Well, that may still be worth exploring since I’m not a biologically typical female. I’m an intersex person, and my form of intersex is complete androgen insensitivity. Is [health concern] likely to impact me?”
2) If doctors ask questions about my body that are medically relevant, I answer them (although I don’t have to give them all the details). I had an appendicitis scare, and the doctors performed an MRI of my lower abdomen to see if my appendix was inflamed. After doing this, one of the ER nurses said that she’d observed that I didn’t have a uterus, and asked me why. I said, “I was born without a uterus.” In similar instances, I might follow up with, “I didn’t have a hysterectomy or other procedure you might want to be aware of.” These medical professionals are likely making sure that they’re ruling out any possible reasons why I may be having a set of symptoms, and answering these questions helps them to do that. However, I’m not obligated to provide further details. Read on, intrepid Anonymous!
3) If doctors ask questions about my body that are NOT medically relevant, I’m not obligated to answer. So. The thing is, doctors are people. And we people are living at a time in history where intersex people aren’t highly visible or well-understood. Many people don’t know what it means to be an intersex person, and sometimes these people wear white coats and stethoscopes and hold medical degrees. Sometimes, it is clear that medical professionals are asking questions about your body that aren’t medically relevant, and you might feel really uncomfortable with this. Well, Anonymous, I’m here to say it loud and clear: YOU DON’T HAVE TO ANSWER THOSE QUESTIONS, AT ALL, EVER
Let’s go back to that appendicitis scare I had. After I stated that I was born without a uterus the attending nurse asked me, “Um, why is that?” Hopefully, this nurse was trying to ask me if there was other medically relevant information she should know about. In response to situations like this, it’s perfectly acceptable to say, “That isn’t medically relevant in this case,” and state that I haven’t had a hysterectomy or other procedure they might want to know about, as suggested above. Another way to respond to questions like this is by asking another question: “Is that medically relevant?” or “Can you tell me how that’s medically relevant?” and wait for a response.
What doctors need to know is information that is medically relevant. That I’m intersex and my form of intersex is complete androgen insensitivity and I have XY chromosomes and I was born with testes and blah blah blurgh blah is usually not medically relevant information. Under those circumstances, I don’t need to report this info. If I feel comfortable providing this information, I can choose to do so, but I’m not required to.
Occasionally, you may have an encounter that makes it clear that doctors are asking questions about your body out of curiosity, and that’s not appropriate or okay. You are visiting them to stop hacking up your lungs or prevent appendageddon—not to teach them about intersex people.
Let me tell you a story. Several years ago, after I moved to NYC, I went to try and find a doctor to serve as my primary care physician. During my first appointment with a physician we shall refer to only as Dr. Doodoopoobutt, I was asked why I took a daily estrogen pill. Since Dr. DDPB was going to be my GP, I came out to them as intersex, and told them my form of intersex. Dr. DDPB responded by asking a series of inappropriate questions, including, “So, um, do you have a penis? Oh. *pause* So you have a vagina, then? Uh, what do you and don’t you have?” Later, when I was lying on the exam table, I was terrified that Dr. DDPB was going to try to insist I should pull down my pants so they could inspect my genitals.
Today, if this situation had happened, I would have the confidence to say, “Those questions aren’t medically relevant. Can we move on?” or perhaps to say, “Those questions are medically irrelevant and they’re insensitive. I’m going to leave now,” and walk out the door and buy a hot chocolate and sit on a bench in Central Park and watch the squirrels stealing soft pretzels right out of the garbage cans, because eff that noise you know? But at the time, I didn’t know these options were open to me. Dear Anonymous, know that if any medical professional acts in a manner that’s inappropriate or disrespectful, you don’t have to sit in that plastic patient’s chair and try to deal. You are fully within your right to let them know it’s not okay, to leave, to go get that hot chocolate.
4) If doctors ask questions about my body that are NOT medically relevant, I reserve the right to lie about it.
Yep, you read that correctly, Anonymous. Real talk: I may choose not to be truthful in answering questions about my body related to my intersex if I know it’s not medically relevant—and especially if I don’t feel comfortable with a particular healthcare provider. I have mixed feelings about this—I want to be clear about the fact that, in general, I don’t advocate lying to health care providers, and that coming out to medical professionals can be a positive experience. That being said, you are not required to come out. It can be painful when clinicians are less-than-sensitive about my body after coming out to them as intersex. I’ve dealt with a lot of damaging words and procedures from various doctors at multiple medical facilities during my childhood and adolescence—I value myself and my emotional health too much to put myself in a similar position again as an adult.
In what situations might one lie? There are often standard questions you’re asked to fill out on medical forms or asked by clinicians that you can’t answer truthfully without coming out and having a conversation about it afterward. For example, I’ve never gotten my period, but I’ve never had a medical appointment where I didn’t have to report when my last period was. Although I tell doctors now, “I don’t get my period,” or “I have amenorrhea,” and go from there, I used to simply lie about it when I was younger because I didn’t know that, “I don’t get my period,” was actually an acceptable answer. My go-to was, “The first of the month,” and then sit there white-knuckling it because I was nervous they knew somehow I wasn’t fessing up.
Finally, I am fortunate that I have never felt truly unsafe when visiting medical facilities as an LGBTQIA individual. However, this is not always the case for LGBTQIA patients. If I felt that my safety was at issue by disclosing my intersex, I would not hesitate to lie to protect myself, and leave the facility if I was able to. Remember, you can always find a new doctor. Keeping yourself safe—even if you have to lie—is okay. #safetyfirst #always
Well, Anonymous, I hope that this helps you out! Before appointments, I’d recommend spending a few minutes thinking about what information you’re comfortable disclosing and how much—it will make you feel more comfortable during the appointment and feel empowered that you’re taking control of the conversation about your body (which is not what most of us have experienced being medicalized as kids).
Fingers and toes crossed that your next appointment goes great! <3
Claudia Astorino is an intersex activist living in NYC. Claudia serves as Associate Director of Organization Intersex International’s USA chapter (OII-USA), coordinates the Annual Intersex Awareness Day (IAD) events in NYC, and writes for Full-Frontal Activism: Intersex and Awesome (her personal blog) and Autostraddle. Help support our contributors here on Patreon!