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 our 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 to 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 every 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?”  

I began to get nervous, and had that sick feeling you get in the pit of my 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 an 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. (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.

Jeanne Nollman

President-AIS-DSD Support Group for Women and Families

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