Guest Post: Invisible Intersex
Editor’s Note: Today’s guest post, by Amy, is about her experience with growing up as an intersexed individual.
Do you know someone who is intersexed? Would you be able to notice a person is intersexed by looking at them? The answer to that question is no. According to the Intersex Society of North America or ISNA It is estimated that 1 out 1,500 to 2,000 babies are born with a difference of sexual development (DSD), so it’s more common than most people would think. So where are all of the intersexed people? We are here and slowly gaining the courage to open up about it.
My name is Amy and I was born with an intersexed condition called Complete Androgen Insensitivity Syndrome (CAIS). I have male (XY) chromosomes, but during prenatal development did not respond to androgens (male hormones) and instead developed female genitalia. I look like a typical woman but do not have a uterus or ovaries. My parents found out I was intersexed because I had a hernia when I was about a month old from underdeveloped testicular tissue or gonads. The doctor repaired my hernia and left the gonads in place until my teen years.
My parents were as supportive as they could be under the circumstances. They tried to prepare me for what was to come, and told me before my friends were going into puberty that I was not going to get my period or be able to have children of my own, and that I would also have to have a surgery. I had the surgery to remove my gonads when I was 12 years old and started to take estrogen hormone replacement therapy to ensure development as a woman would successful. There was no education or counseling session with professionals to tell me what was going on or why the surgery needed to take place. I remember someone telling me in high school I had XY chromosomes, but that did not make sense to me at that time. After the surgery was over, I spent several years knowing I was different than the other girls but not understanding why or questioning it.
Fear and anxiety about my difference built up over the years because no one talked openly to me about it. I continued to see an endocrinologist on a regular basis for check-ups and hormone replacement therapy, but it wasn’t until my mid-twenties when my curiosity got the best of me. I went online and searched for the diagnosis I saw in my medical charts, “Complete Androgen Insensitivity Syndrome.” I saw terms like “male chromosomes,” “testicular feminization,” “hermaphrodite,” and rumors about celebrities who were also born that way. It was a huge shock to say the least! A positive thing about searching the internet for CAIS was coming across a support group, where I learned I wasn’t alone and eventually met other people born intersexed. I also started to have open conversations with my parents about being born intersexed and how it has affected my life.
Around my 30th birthday, I was reaching more than one milestone. I had a feeling I was coasting through life not being my whole self. I wanted to be more open and honest with my family and friends about who I was as a person. This secret also kept me from having a fulfilling dating and sex life. I started to open up to my closest friends, educating them about how I was born. I disclosed to my best friend over email, because I was too anxious to do it over the phone. All of my friends responded positively, and wished they would have known earlier so they could have been there for me.
With this confidence, I decided to put myself out there in the dating world with the help of online dating. I met this younger, athletic, smart guy who then became my boyfriend. We spent several months getting to know each other and I confided to him I wasn’t able to have children, and he accepted that. Then one spectacular day, while on vacation in LA, he proposed! After happily accepting his proposal, there was a dread that crept up. I hadn’t disclosed to him about being intersexed yet! A month went by before I told him the truth. He ingested the information and stuck around to say “I do,” and we decided that one day we will build our family together through adoption.
Instead of feeling guilty about not telling my husband I am intersexed before he proposed, I later realized I wasn’t ready to tell him and am glad he accepted me for who I was after I did. Most people who are intersexed have a fear of being rejected for telling the truth about who we really are. The fear stems from the secrecy of our diagnosis, surgeries, and sometimes even gender assignments! We are told that you can continue to live your life as a “woman” with this condition if you have this surgery and take these hormones, but you just won’t have your period or be able to have your own babies. Like life will just play out that way and be fine?
But life is not that simple. As we have seen with the gay rights movement, we cannot hide who we are because it will eventually come to the surface. But our society wants to categorize gender into “male” or “female” and not deal with the “other” category that already exists. Intersex is a paradox some people have attempted to hide under the rug and that has worked so far. As human beings, we deserve the right to live life as we are—without being ashamed if we do not fit into the typical roles of society. The real truth is if we have truth, compassion, support, and love in our lives we can feel pretty damn good about ourselves.
My story is similar to many others who were born with Complete Androgen Insensitive Syndrome. There also are several other diagnoses besides CAIS that qualify as Intersex. And we have not always been treated well in the past, especially from the medical community. I have heard personal testimonies of people who were photographed nude, coaxed into surgeries, and assigned a gender that did not fit who they were. Years past, the medical community wanted to provide a quick fix and keep our lives under wraps, which is where our invisibility began. Although it is progressively getting better, some of these injustices are still occurring.
The future of the intersexed community is gaining strength, and with that strength the confidence to be open with the world around us. I have been blessed to join a network of support who is working on education, advocacy, research, and awareness to the general public and medical community. The AIS-DSD support group is focused on being a positive resource for intersexed people, their families, and a broker with those who want to work with us on research studies. We have made positive strides, but we still need to work on prejudices such as people who are afraid of our differences, unconformity, and even religious discussions about human evolution and how we fit into religion.
Amy Buzalsky is a social worker who works with cancer patients in Iowa. She enjoys gardening, spending time with her dogs Tyson and Bailey, and tandem bicycling with her husband, Leo.