Friday, January 30, 2009

My AIS Story - Part 7

Before telling my husband, I resolved first I would need to learn everything I could about AIS. I needed to be fully informed about what it is and what it isn't, to answer any questions he had, and to just of course deal with this myself.

I also decided to do something I had not been in the habit of doing before. I told a friend. One of my best friends. His positive reaction and support were invaluable those first few days dealing with my discovery.

A medical education about AIS, along with reading about other women (and men) with this condition, also helped me a lot. I finally found stories -- many of them -- about women like me, who had the same feelings and fears, some of whom had also been deceived by doctors and parents who perhaps wanted to protect them from the "awful" truth.

Over a few days I started to feel better.

I was always a woman. I AM a woman. Maybe once, long ago, when an egg was fertilized and chromosomes met, God or the Universe, or just plain biology had planned a boy. But then I think my Mom's will and desire for a girl was stronger. I pictured her, hoping and praying for a daughter. It was what she wanted more than anything. Scientific explanations aside, I like to think it was her hopes, and all the dreams she envisioned for a little girl, that turned an X,Y fetus into a daughter and not a son.

I read about other likely AIS women throughout history, from actresses and models to political figures. Though we can never know for certain whether Joan of Arc or Queen Elizabeth I had AIS, I did like the theme that emerged. Tall, striking women, desired by men, but with much more than men on their minds. They were powerful women. Influential women. Images of guns and petticoats came to mind, and it somehow worked for me. It made me feel less a freak, and more... special.

AIS women have lived and died for thousands of years, and none were the wiser. Before DNA testing, before ultrasounds, before all of the discoveries of recent medical history, we were just women. Supposedly tall, curvy women with good looks :) But real women all the same.

Was it a single chromosome, or a diagnosis, or a part of my anatomy removed long ago that was going to make me feel different?


  1. I am 19 and have known about my CAIS since I was 15. After reading multiple articles like you did, I also started to feel less of a freak and more special..We truly have a unique and interesting quality, and it makes us more beautiful because of it!

  2. Agreed with you! We are definitely not freaks. No intersex folks are. Society's just got to catch up with us, and I guess that takes time.

    It's awesome that you are only 19 and already coming to terms so well with this. All the best to you.


  3. Was the surgery you had when a teenager necessary then?

  4. Miriam, Interesting question. In my mind, and also many in the medical community's, the surgery was NOT necessary at that stage. I have read statistics that say that our risk of developing testicular cancer is in reality not very high. Personally speaking, I think that removal of the testes has more to do with doctors wanting our bodies to conform to expected norms.

    That said, I do NOT have those statistics in front of me, nor do I know of a statistically valid and comprehensive study of women with AIS done that fully analyzes objectively our risk of testicular cancer. So perhaps there is a greater risk of keeping them in.

    I wish they had left mine so that I could have had my body produce its own estrogens longer on and just had them monitored. But that is in the past so I don't dwell on this thought.

  5. By the way -- Zoe and Lily are the same person. I use both pseudonyms in my writing.