I was born in 1965 in Madison, Wisconsin. When I was diagnosed with Complete Androgen Insensitivity Syndrome (then referred to as Testicular Feminization Syndrome) at about the age of 10, I was told that I had a “family condition” and could not have children. That was all the doctor told me. When I was about 37 years old, I came across my medical records in a box at home. Ten years before, I requested my medical records from my doctor in Madison when I moved to Minneapolis and sought out a new doctor. For some reason, I felt compelled to read the medical records. That was when I discovered the truth about the “family condition.” I read that I am genetically male, and the surgery I had in 1977 was a gonadectomy. Oh, yes, I had a surgery in 1977 at the age of 12. Absolutely no information was given to me about it. Basically, I was led to believe that the surgery was due to (again) the “family condition” and that was it. The surgery left me with a lovely abdominal scar that I have hated for years.
I was really confused and shocked reading the medical records, because my first thought was “why didn’t anyone tell me?!” After I read my medical records, I talked to my husband and told him what I found. He knew what I knew at that point, which was that I couldn’t have children. He had known that before we got married. In the back of my mind I always knew there was “more to the story” of the “family condition,” but I had no idea how deep it went. The genetics part of it freaked me out, being genetically male. I couldn’t comprehend that. And to top it off, the details of my surgery. They removed my gonads? I had gonads? Again, very difficult to comprehend this fact.
I immediately got online and did some research. I started with “Testicular Feminization Syndrome” as a search term and found some amazing information. The most amazing discovery was an Androgen Insensitivity Syndrome support group. I read some of the support group members’ stories, and was amazed that my story was so similar to theirs! I got in touch with a support group member and joined the group’s e-mail circle and hosted a support group meeting soon thereafter. I forged some very important friendships, which has helped me deal with many issues that arose after I discovered the truth about AIS.
There has been a lot of secrecy and shame surrounding AIS in my family. I don’t want to get into details about who has AIS in my family. It goes back generations. They are on their own journeys and I have to respect that. My journey is one of having my own voice and telling my own AIS story. I will not be intimidated by family secrecy and shame any more.
Telling my story is also helping me work through the experience of being picked on in school. After I had my surgery in 1977, I told a friend that I had an operation and couldn’t have children. She then told other girls in my class, and I was treated very differently. Some girls didn’t want to use the same toilet as me, and girls that I had thought were good friends before were distancing themselves from me. I felt very alone and sad, and a feeling of being different from everyone else has stuck with me ever since grade school. It’s very difficult for me to fully trust others which I know has prevented certain friendships from developing. EMDR therapy helped me work through my issues in dealing with AIS, especially as it pertains to the family history of secrecy and shame and being picked on and shunned in school.
Intersex issues are coming to light today, and people are discussing it more and more on social media. Very exciting times! For the foreseeable future, I am the only representative of my family who will openly discuss Androgen Insensitivity Syndrome. I don’t know if future generations in my family will be diagnosed with Androgen Insensitivity Syndrome. Time will tell, but hopefully they will be living in a world that is more knowledgeable and more accepting of intersex conditions. Education is very important. Telling our stories is important as well.