The Realization

My light bulb moment about what it meant for me to be born intersexed came when I was 24.  I was working with young adults in HIV/AIDS prevention, and I was in my office and decided to do an Internet search for the term "Complete Androgen Insensitivity Syndrome", which is what I have seen listed in my medical charts.  And BOY was I in for a surprise.  This was the first time I was presented with the terms "intersexed" and was educated that although I developed as a woman, my chromosomes were male.

Up until that point, I had learned bits and pieces about my body and reproductive abilities along the way.  My parents told me before I was 12 I was not going to be able to have children and get my period like the other girls, and I would have to have a surgery in the next couple of years...but it wasn't too clear as to why.  But then came my cancer diagnosis and that took the spot light away from my reproductive health concerns.  I started taking hormone replacement therapy (hrt) and thyroid medication (due to having radiation to my head/neck) and didn't really think much of it because I was really good at following the orders of my doctors.  Because heck...I just wanted to get through my cancer.

I have a memory of going to a doctor appointment as a teenager with my endocrinologist and the resident told me I was born with male chromosomes.  I think that was their big moment of educating me about my condition, but it didn't register with me at all.  Maybe because I came close to failing biology in high school?  In all fairness, it was a quick mention about having male chromosomes and no follow up education or offer of mental health services for emotional support.

Things have gotten a little better over the years for intersexed people to learn about their conditions, but there needs to be some solid guidelines health professionals to follow for educating families and their patients.  Most intersexed people would agree the best way to do this is open and honest education from the diagnosis and continued emotional counseling and support.  There had been too many intersexed people who learned about their diagnoses by doing their own research because they were never told directly by health professionals what was going on with their bodies, and their families were also told by these same doctors to not talk about it.  We are starting to move past this and that is a good thing!

This realization and Internet search at the age of 24 led me to a special place.  An online support group of other women just like me!  I touched base with the group and was quickly accepted.  I knew I wasn't alone and learned many other women out there had stories like mine.   But for many upcoming years I held onto this information like a secret.  Afraid of the unknown of what would happen if other people knew that about me?  My friends would like me for who I am, but what about love?