My AIS Story - Part 8

When I had come to terms with my discovered diagnosis and learned all I could about Androgen Insensitivity Syndrome, I had the talk with my husband. When I began with the discovery of my records, he had a worried, nervous look on his face. It probably didn't help that I was crying.

When I finished my "speech" about how I may have been "meant" to be a boy originally, but developed as a girl, a girl with internal, useless testes, and a Y-chromosome, he asked if this would affect my health in any way in the future. When I replied no, he breathed a sigh of relief.

He had thought I was going to tell him I would have to undergo yet another surgery, or would get cancer or something just as bad. This XY discovery, even the undescended testes. These things didn't matter. To him, I was a woman, and had always been a woman. I had always been honest with him. I was the same person he het met several years before. What a relief.

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After "coming out" to my husband, I talked to my mother on the phone about my discovery. I think she sensed what it was about immediately, when I told her I had found something disturbing in my old medical records.

I still don't think she knew the full extent of my condition. I think it was one part the doctors explaining things in terms she didn't quite understand. And one part denial, and worry more for my overall health and well-being to get caught up in asking the doctors lots of questions or for clarification of words like "gonads".

I will never know for certain what was said and wasn't said in that doctor's office or in the hospital that day, and though it still does bother me - to learn I'd been deceived, to learn that something was taken from me (whether I wanted it or not) without my knowing the real truth about what it was - I've come to peace with it to a large extent.

Ethics in medicine, ethics in the world, are always changing - and hopefully for the best interest of the patient. Back in the early 90s and before, the world was different. To be born intersexed in some way, to fall in between, was horrible and shameful. In a way many can't imagine now, I think that the doctors at that time thought they were doing what was best. It may have not always been the "right" thing but I think there are few times in life when things are so clearly black and white, right or wrong. This doesn't keep me from feeling hurt or angry, but it does help me to understand.

I think often about people with varying degrees of AIS. I feel extremely lucky in a way to have been born with the complete version, CAIS, because it meant I was born completely and unambiguously female on the outside. I think it would have been harder to fall much more in between. There would have been many more questions, and quite possibly then in the 1970s, a decision made for me about my gender which I would later not have been able to come to terms with.

I guess I feel lucky to have AIS overall, because it made me who I am today. It made me a woman. Social equity issues aside, I have never desired to be a man. Being a woman has afforded me a greater range of freedom to express myself than I think a lot of men feel they have. I can be as tough as nails in one situation, and cry like crazy over another, and it's still ok. Though the same should apply for everyone of course, man or woman.

Besides - my Mom had three healthy boys after me. I think that's more than enough men in the family. :)