I began to get nervous, and had that sick feeling you get in the pit of your stomach. I had to find out if they knew. Maybe they had lied to me too. Later that night I called them collect. I phrased questions hoping to figure out what they had known after my surgery. They did not know anything more than what I had been told. What a relief. But now, I realized, I had to explain the whole thing to my parents. Crap.
Of course, they were shocked and overwhelmed. We became enraged that doctors would withhold such important information from us. Surely this was illegal. Separately we contacted lawyers to see if there was some legal standing for a lawsuit. In a nutshell, we were told that unless I had tried to commit suicide, I didn’t have a case. It didn’t seem right, but we let it go.
A few months later I flew back to New York and confronted the doctor who had lied to me. He seemed apologetic, but maintained he thought he was doing me a favor by not telling me the truth about my condition.
I was fascinated by my new diagnosis. On the one hand I felt unique, but on the other hand I felt freakish. Would any man want to be with a woman with male chromosomes? I wondered how this would affect my feelings of femininity, my sexuality, and my gender identity?
Surprisingly, my new chromosomal identity didn’t change my core beliefs. I am a strong woman who has always persevered and I had healthy relationships. So, I was okay with it. “Take me as I am” had always been my philosophy, and now I just needed to kick that line of thinking up a notch.
I spent the next two years pondering this revelation. I moved to California, started graduate school, quit graduate school, and moved in and out of a few relationships. When I entered relationships, I disclosed the fact that I had male chromosomes. It hadn’t seemed to matter to my partners. But still, it was on my mind 24/7.
Then, at age 27 I met someone special. We were working at a Juvenile Detention Center in Northern California. About a month into the relationship, we were hiking and I told him about my surgery, the male chromosomes, and that I couldn’t have kids.
He swallowed hard and said, “Well, if we are together forever, I want to have two kids.” We would adopt or do surrogacy. Our cards were laid out on the table. We fell in love and married 4 years later.
Again I returned to college to complete a master’s in Psychology. I finished all my master’s coursework, got good grades and was working on my thesis. I decided to write it on Swyer’s Syndrome. I wrote about all the studies done on girls and women, and intended to discuss the emotional components that were lacking in the studies.
Halfway through writing my thesis, I got stuck. I had no support, I didn’t know anyone like me, or how many people like me even existed. As I read the medical journal articles I realized that there must be a lot of people out there like me.
I began to feel depressed. I abandoned my thesis and never graduated. I felt like a huge failure. I wanted to start a support group for people like me, but did not follow through on that either. I felt like an even bigger failure.
I focused on a career in Probation, enjoyed my marriage, and adopted the boy and girl my husband and I had promised each other. However, this genetic disorder continued to permeate my thoughts. Every time I had to fill out an application and check male or female it would remind me that my chromosomes were male. Watching television commercials about feminine products and pregnancy made me feel different from the women in my life.
At the age of 45, I finally found an online support group for women with my genetic disorder as well as a variety of other Disorders of Sex Development. I learned that many of these people called themselves intersex.
The pieces of the puzzle finally came together and I wasn’t alone anymore. The group has become like a second family to me, and today I am president of this national support group, called the AIS-DSD Support Group for Women and Families.
Buoyed by the support of my newfound friends, I contacted my doctor at the University of Arizona and asked what her recollections were when she disclosed my medical diagnosis to me. Surprisingly, she admitted to being unsure if she should tell me and conferred with a colleague on the matter.
I am thankful he urged her to tell me.
I went on to tell my story in episodes of the television shows Mystery Diagnosis and Strange Sex. I retired from Probation work in the spring of 2012, and now spend my time educating doctors, nurses, social workers, students, members of the criminal justice system and organizations about intersex/disorders of sex development. Additionally, I work with families at local hospitals when their children are born with ambiguous genitalia.
Finding out I was intersex has changed my life. I’ve accepted that my journey into womanhood was different than most everyone I know. Sometimes I wish my life had been a little easier, but I know now I wouldn’t trade it for anything.