Guest Editorial nr 2, September 2011

By Katie Baratz

I found out that I had complete Androgen Insensitivity Syndrome (AIS) when I was in my junior year of high school. I had always known that there was something different about the way my body was put together—my mom had told me from the time I was a little kid that I didn’t have a uterus and would never get my period or become pregnant like other girls did—but this was the first time that anyone had put a name to what made my body the way it was. In one way, it was a huge relief, because I realized that if my condition were common enough to have a name, then there had to be other people out there experiencing the same feelings I was. That feeling of closure, however, was soon replaced by more confusion: what does it mean to be a girl with AIS? Does it matter that I have XY chromosomes and testes that need to be removed? In what way does having this condition change me and my life?

The hugeness of these questions terrified me, and I tried to push them down and go about the business of applying to college, singing in the choir, and going to the prom. But they continued to resurface, interrupting my life like an annoying little brother as I wrote college papers, hung out with friends, took medical school exams, and fell in love. I often felt like a fraud and worried that someone would realize that the put-together, happy face that I wore was concealing a confused, messy person living inside, like quilt concealing the overflowing pile of dirty clothing shoved under the bed.

Fortunately for me, every so often a stinky pair of socks or stained t-shirt would roll out, and I found people to help me clean and sort the mess. The women and teens in our support group showed me that the feelings I had were a normal part of the experience of having a condition like AIS. Therapy helped me realize that I was strong enough to handle those feelings and that the struggle to understand myself is something everyone goes through at some point in their lives. My family and friends reassured me that I was loved no matter how big my mess was.

It’s now been ten years since I found out about AIS. A lot has changed in my life—I’m married, a doctor, and an advocate for other people and families with DSDs. I’ve learned that having a DSD means something different to everyone—for some it’s inspiration for the music they write and play, for others it’s an excuse to adopt children of every color of the rainbow, and for many it’s a reminder to be open to difference in other people. But what does being a girl with XY chromosomes mean to me? It means that I’ve the chance to be in a room with 100 other girls with XY chromosomes and the opportunity to tell Oprah my story. It means that I want to spend my life working to improve medical care for other people with DSDs. It means that through adoption, I’ll be a mom to kids who need a home. And yes, it also means that I still have a few pieces of dirty laundry left under my bed. But I know that they’ll soon enough get cleaned and put away.