Kata's Story

[Received July 2001]

Hello! This letter may get published in the website if you want to.

I am a 23-year-old Finnish woman with AIS. My English language is not perfect, but I hope you´ll understand it.

I have the very same experiences as Elisabeth [on the website]. I am quite good-looking, smart girl, successful and attractive. My only problem is that I have never had sex or a real relationship with men. All my merry friends would be shocked by this fact. I try to avoid lying to them, I just don't talk about sex with my friends. As all the culture is so sex-centered, I feel that my virginity would be too humiliating to reveal. I'm not even sure if I want to have sex at all or if I even am homo- or heterosexual. The only thing I know for sure is, I'm still scared to death of having sex.

That naturally affects my social life. Just think about it, how often sex or relationships are concerned in everyday life? Conversations, parties, movies, family meetings etc? All the time, that's the answer. Some of you have propably experienced the same. Even my mother, who knows about my AIS, asks regularly about boyfriends etc. I have never had the guts to answer: "No mother, I don't have a boyfriend because I am not sure of my gender or my sexuality and because I'm afraid of failing in intercourse. I hope you are not too disappointed?"

For much of this dilemma, (knowing myself this is a bit stupid) I blame the doctors who made my diagnosis. I was thirteen, and there had been infertility - propably exactly AIS - in my mother's side of the family, so there were some doubts there might be something wrong in me too. My periods did not start in time so my mother took me to the central hospital.

I went through a routine check, and finally I was diagnosed to have "testicular feminization". The young male doctor displayed a figure of my chromosomes, told I had a genotype of a male but appearence of a female. "The patient has a short, blind wagina and there's some risk of a tumor if it's not operated", I heared during the process. "It's OK", he eventually said to me smiling the doctor smile, "otherwise a healthy youngster". It came clear I cannot have children, but simply not a single word of sex. Nobody offered me any counselling, nobody explained to me what this peculiar condition might be. On our way home mother shortly apologized to me that she ever gave me birth. My otherwise so intelligent and tolerant mother. That's a pretty nice start to adulthood, I´d say.

It's been ten years now since the first diagnosis. I haven´t been at gynecologist's even once. I haven´t had sex or relationships or talked to anyone about it. I did not want to face the problem ever again, not think nor talk.

Now it has finally struck me, on this tenth anniversary, that I have to decide if I want to live normal life or not. I can live and die proud and emotionally isolated without ever telling anyone or I can at least try to do something. It's only now I have found out that there actually IS reasonable information about this and there are other names to it than this "testicular feminization", which I feel somehow inappropriate. And what's most importat, I have found out there is a lot of other people with AIS too.

I have recently started the medical process again and this time I want to know just everything. I want to know what this syndrome means and what it doesn't. I want a good psychiatrist who knows something of these things. I finally want to get rid of this ten-year-old circle of silent shame I have been living in most of my adult life.

I know the doctors are not the big bad devil in this trauma, nor is my AIS. It is a complicated mix of many things. Now I'm strong enough to talk about my problems and do something to them, and that's the only thing that matters.

Still, I think that it would have been easier to grow up if the doctors would have treated me as a real living and feeling person, not as a medical freak, and if somebody would have talked to me seriously about me, genders and sex. Now they really made me feel like sexual outcast. They made me think that, for example, school lessons of sex issues were not meant to me: teachers speaked about sex of another species, the species of the normal. Anyway, the problem was not that I was told about my AIS. It is good to know that. I had always known there was something special in my body or my gender, and the diagnosis makes many things clear which was a true relief. The problem was the way it was told. Myself I have always liked my body and myself in general, I still like it (!). I just was hinted I was a monster to other people, and that's what I think is unforgivable cruel.

Now reading this text I wonder myself how stupid and weak I have been closing my eyes and ears of everything what comes to this subject. I'm trying to make a big change in that. I wish everybody else the same!

Kata, 23 years, Finland