Sallie's Story

This account was written in March 1996 by Sallie, a 55 year-old Canadian AIS woman who had just made contact with our N. American representatives. It was published in ALIAS No. 9, Autumn 1997, under the title 'Learning by the Book'.

I had my gonadectomy in 1964. At that time, I was living in the United States and had no health insurance. So, when my doctor suggested that by signing a release form my surgery could be done for free in the university medical research unit, I didn't hesitate. After all, I thought I had cancer. Two months later, after innumerable pelvic exams, nude photographs and surgery, I was told that I should tell my future doctors that I’d had a ‘radical hysterectomy.’ To my questions about what was wrong with me, I only received silence or some version of “it’s too complicated for you to understand.” The following are some of the demons that I wrestled with after doing my own research and trying, in my isolation, to understand what it all meant:

How easily words fall from lips. “Oh, you women are all alike”, “It must be a female thing!”, “You're thinking just like a woman”, “What's that, female intuition?” Such trite, overworked comments (often said with derision or sarcasm); and yet, since that day when I finally uncovered my diagnosis and knew, really knew, that I was neither male or female (‘male pseudo-hermaphrodite’ the literature called me), these words, spoken so thoughtlessly, have cut into my heart like a knife threatening to expose my sexual dichotomy, threatening to expose me as the fraud I now felt myself to be.

I'm tall, taller than my sisters, taller than my father was. In fact, I am almost as tall as most of my male cousins. How many little ladies have come up beside me and, without even looking up, said “Sir, can you help me get that item off the top shelf.” Or how many times have store clerks, who can't be bothered to look at me directly, said “Can I help you, sir?”. When my XX sister introduces me to her friends, I always get the response “How did you ever end up being so much taller than your sister?” Do you really want to know, lady, I think to myself, and the anger – smothered – tears at me until I turn it inward and just feel depressed at being what I am; at not being a ’real woman.’ I hear young boys singing in the choir at Mass and I think of how the literature refers to AIS patients having ‘eunuchoid extremities’ and wonder if my singing voice (which has often been described as clear and youthful) is really just like a castrato's voice! Am I really just Nature's own eunuch?

Why, oh why, couldn't I have been told the truth when I was diagnosed (I was 23 years old after all) by caring people who could have helped me come to terms with my uniqueness – people who could have helped me explore and de-mystify the medical literature? Instead I've spent all these years searching for answers and hating the answers I found, with no one to help me ease the pain of self-hate that comes from being treated like something too terrible to be spoken of openly, a dark secret that only you and your doctors may know. Even now, I cry over the injustice – not of having AIS, but of being lied to, cut open, torn apart, with no answers except for the dark ones I found in the medical libraries. I even found my picture in one of them (I mean, the black bar was across my eyes, but I recognized myself, all of us, in the rigid posture of that totally humiliated object of medical interest).

Years later, I have finally begun to recover from the wounds of puberty, surgery and the lack of disclosure; through the caring acceptance of loving sisters (one of them AIS like me); through the gentle guidance of a wonderful therapist; and now through the experience of meeting and talking with other AIS people who, it turns out, are just as refreshingly and uniquely human as I am.