Standing Up

A 10–year old and her mother walk into a male gynecologist’s office. That sounds like the beginning of a sick joke, right? Imagine how it must have felt to actually be that 10–year–old. I walked into the Salt Lake City ob–gyn office, terrified out of my mind. It was the year 1999 and due to the recent accessibility of the Internet, there was a surprising amount of information about complete androgen insensitivity syndrome (CAIS) available. There was also an active and prominent support group for women with CAIS and other similar conditions. Despite all of this, I was standing in the office of a doctor who knew nothing about my body. He did not direct me to any actual support, and for the next twelve years I went from doctor to doctor, none of them really knowing what to do with me. For as much as I was in and out of the doctor’s office, I never seemed to receive any “care.”

It was really difficult to have doctors who knew nothing about my condition. It was scary to be a kid with hundreds of questions but without an adult who had the answers. So many doctors were excited to look at me, to talk to me, to get the chance to meet me. As a child it made me feel like a freak. I felt alone, and scared, like I was on parade for all of these people who didn’t know anything about me except that I was “special.”

I was savvy enough to turn to the Internet for help, but searching for “sex disorders” online was a terrifying thing to do back then. Even now, it’s not a safe space for a pre–teen looking for answers. I was so scared and ashamed of my body, and I desperately wanted someone to talk to about it. I found articles about celebrities who were rumored to be like me, and I saw the word “hermaphrodite” thrown around as carelessly as it had been used in my doctor’s office. I wished desperately that one of those celebrities would admit to having a body like mine. Because if any of them were like me, maybe I wouldn’t be the freak that the adults made me feel like I was. Maybe then I wouldn’t be so alone.

As hard as all of this was, in a way my doctor’s lack of knowledge turned out to be both a blessing and a curse. I felt cursed and ashamed of this different, “broken” body that couldn’t be “fixed.” I felt like a problem that nobody had the solution to. I was told so many lies—that I would definitely get cancer, that I could never have sex, that I needed surgery immediately. Not once was I ever told the truth—that there were hundreds of others out there I could talk to, that I didn’t do anything wrong, that I was going to be okay. My doctors didn’t point me in the direction of a support group or a therapist who could help me work through what it all meant. In Utah, the most important thing a woman can do is to have children, and it was devastating to learn I would not to be able to conceive. I wish any of my doctors had pointed me in the direction of a professional I could talk to about it.

It wasn’t until I was older that I discovered the blessing amongst all of this pain. As it turns out, my doctors were so entirely ignorant about my condition that they didn’t know how to remove or even find my internal testes. I’ve managed to make it 25 years without surgery. Now, when I speak to medical students, many of them balk at this idea that surgery is something I’ve “escaped.” But I know how many affected individuals see it as I do. It’s incredibly lucky that somebody with CAIS is surgically untouched, and I fully believe that rarity to be the saddest thing. It shouldn’t be the norm to...