Walking across the University of Arizona campus, the warm heat soaked through me in the Tucson desert. I was a 25-year-old woman about to graduate and had just ended a long-term relationship. My family was located on the east coast and I was alone, about to face a far greater challenge than either my college studies or relationships could have prepared me for.
That day, I had an appointment with my doctor at the university health center. I would find out what was in my medical records from testing and surgery dating back to when I had been 18 years old. I had flown to New York the previous summer to hand deliver a written request for my medical records to the hospital where the testing had been performed.
I had to go in person because months earlier, my doctor had made a written request for the records to Albany Medical Center in New York, and they responded that there was no record of me ever having been there. I was puzzled.
When I arrived at the hospital I told them about the letter we received saying they could not locate my records and that I’d never been there. I challenged the receptionist, detailing the study requirements, which included nude medical photography, and discussion of a rare genetic disorder.
I demanded she find my records. I waited impatiently while the hospital employee miraculously located my records, and informed me they would be sent to my doctor in Arizona. Having worked out the first step in the process, I headed back to Tucson.
Finally, a few months later, my doctor called me to let me know the records had arrived. I really had no clue what was coming, but with all the difficulty involved in obtaining them, I felt apprehension.
My doctor seemed nervous, watching me carefully as if to assess my ability to deal with a discussion of the medical summary notes she was pulling out of an envelope. My heart rate sped up as she named my medical condition. In fact she said, “There are two names!”
One was Swyer’s Syndrome, and the other was called Pure Gonadal Dysgenesis. Neither set off any bells in my head. Then she dropped the bomb that would forever change my life.
“The records say that you have XY chromosomes. Do you understand what that means?” Her question ran over and over again in my mind.
After a minute, I blurted out, “Wait, are you saying that I have male chromosomes”?
“Yes,” she said.
All thoughts and emotions came to a halt in my mind, and then exploded. This was not something I had ever heard of, and seemed so beyond anything I was expecting. I could barely comprehend it. Yet, there it was in black and white, all the answers to questions I didn’t even know I had. I reeled as I realized the doctors had known this information, yet chosen to withhold it from me when I was 18.
All they had told me then was I wouldn’t get a period and my ovaries weren’t normal. Now I was learning that I never had ovaries or testicles to begin with! The records confirmed I had a complete hysterectomy (removal of uterus, fallopian tubes and cervix) at 18, and that my streak ovaries would become cancerous if they hadn’t removed them.
A few years earlier at a community college in Florida, it first occurred to me that I was different from other women. My biology teacher and I looked to a textbook and guessed what my medical condition might be. I called the doctor in Albany and asked if I had a variation of Turner’s Syndrome. He said, “yes.” I was surprised by his answer and had no follow up questions. The phone call ended there.
Now, as I sat and read over the records four years later, I read his notes on that phone conversation. The medical notes said, “Patient did not specifically ask about her chromosomal status, and I did not tell her.” Any idiot could have seen I was fishing for answers, for the truth.
I began to see red. How could a doctor fail to give me such vital information, and basically lie to me? I had tried to figure out why I was different for the last 5 years.
I wondered how it was possible that I had fallopian tubes, cervix, clitoris, and a small uterus and male chromosomes? My doctor asked if I was okay and how I felt about what she told me. I think I surprised her when I told her that mostly I was relieved.
It’s a very strange thing to know you are different, and then to receive overwhelming validation. I told the doctor that the information did not affect my identity, but created more questions and confusion. She said she would help me in any way she could. I left the medical center, the copy of my records in hand, screaming to the universe, “what the hell am I?”
I walked home, reviewing 25 years of my life through the filter of what I had just learned. I didn’t have to think too hard to remember the first entry in my baby book. It said, “Everyone thinks Jeanne is a boy. Lovely.” I had been mistaken for a boy occasionally since I was 12. Thinking about it made me a little uncomfortable now.
I’d always felt out of place in my family because I am significantly taller than everyone. I remembered the doctors telling me at 18 that I needed to take high dosages of estrogen to stop me from growing too much taller and to help me develop breasts and hips. My body had never produced estrogen or testosterone and I had a very boyish shape, so I complied. I was relieved when my body started to change. Going through puberty as an adult was a unique experience.
I had never felt like a boy in my life. I loved dolls and girly clothes as a child. I liked make-up, styling my hair, and wearing heels. Yet, I was extremely athletic, muscular and competitive. Over and over again I tried to figure out what having male chromosomes meant. I wondered if I had any parts inside of me that were male. My mind was racing.
Then I wondered, “Did the doctors tell my parents about my diagnosis?”