Ann's Story

[Received Feb 2000]

I am 25 and I have known I have AIS since I was about twelve, when my mother told me rather than let me go on expecting to start menstruating like my best friend. I was so angry then, feeling that I had been cheated. The worst thing was thinking that my parents, who I had always absolutely trusted, had lied to me and concealed the truth. I still find their lack of openness and affirmative support very hard to deal with. I hated going to the hospital when I knew why I was being taken there: previously I had believed it was proof of my parents' love that they made sure I had regular check ups. Once I knew the truth I felt that they were dragging me to the slaughter - my mother is very angry about the way we were treated at the hospital now, but I wish she had spoken up for me all those years ago. I hated being poked at and peered at, lots of strange eyes. Once my sister and I were photographed for medical purposes and once I found "Interesting case" written in block capitals on my medical records folder and I felt completely objectified.

The hardest thing for me was not knowing the whole truth. Like a lot of girls with AIS, I thought it would make me more masculine. At the age of twelve I started wearing full makeup with foundation and powder whenever I could get away with it. I only wore skirts and I wore lots of pink!I also shaved off all my body hair, including that on my face, because I thought I was hideously hairy. I found it hard to go to the loo at school because I even thought my wee might sound like a man urinating and that I would be found out. My parents had impressed on me that at all costs this must be kept a secret, and I went through life terrified that anyone might know this disgusting and shameful secret.

I don't think anyone knew the whole truth. My parents were so shocked that they don't seem to have asked and when I started finding things out for myself I was educating them - well, my mother; my father cannot bring himself to talk about AIS and my mother once told me in an unguarded moment that when he knew we weren't normal he couldn't relate to us anymore. I have one sister with AIS also, and a younger sister without it. I am so jealous of her, not because she is normal, but because my parents seem so different with her, close and natural, and she can fulfil their expectations of grandchildren so I suppose she is extra precious. There is none of the baggage of guilt and blame in their relationship with her, I mean, and so it is easier to love her.

I think the hard thing with AIS is that it gives you two burdens - not being able to have children and not being "A real woman". In my teenage years I so very much wanted to be normal, and used to have a rich fantasy life of being normal like my best friend. But her life wasn't really normal - she had been sexually abused in the midst of her perfect and normal life, so perhaps I was the lucky one. Recently, not being able to have babies has been a big problem for me. I feel a failure and inadequate and this affects every aspect of my life, changing my personality into that of someone clingy and weak. Our local adoption people have been awful to us, and we are now trying to adjust to living without the hope of having children. This seems so hard as we both love children and would I think be good parents.

I say we because I am married. I got married in 1995 and have been very happy, although our sex life can be difficult at times because of my emotional difficulties. I used to think I would die if I had sex and it wasn't until I was sixteen that a doctor examined me to assess my suitability for sex, as he put it. By that time I had already ascertained this for myself, but it really broke my heart that the first man to touch me so intimately should be a doctor.

I think because I wanted to prove that I was desirable when I couldn't really accept that I was, I had a period of promiscuity and slept with several men. I had to be completely drunk when I lost my virginity and I regret that now. I never had a complaint though: not one man ever said to me that I seemed abnormal or asked about me not having pubic hair. I was complimented and admired and this gave me confidence. I think we can spend too much time agonising over our imperfections and not enough reminding ourselves that we are pretty with lovely soft skin and nice figures.

The night before I got married I had an AIS newsletter which told me that I have male chromosomes, something noone had bothered to tell me before. I was hysterical and thought I would be arrested for trying to get married - I imagined "they" would somehow know and drag me off to an asylum. You see, it is very difficult to shake off the old fears and shame. But, of course, I was married and we have been very happy. Being loved and appreciated and desired has a wonderful affect. I try to be true to myself without worrying about being womanly or feminine. It is hard to know whether I want to bake cakes and arrange flowers because that's me or because that's what ladies do. But I think I know and I am fairly well adjusted now to being the person I am. I still get upset when I read articles by Germaine Greer insulting women with AIS, and I have bad days when I feel like a horrible freak that ought to be dead. But I can recognize that as unrealistic and irrational, and work on feeling better tomorrow.

I think the most vital thing a parent can do for a child with AIS is to be open and not to pass on their terror of discovery. Children deserve the truth because it is their truth and it can be revealed in sensible and caring ways. Parents ought to defend their children against the doctors, too, and be assertive. It is very hard to forget being let down by your parents.

I would say to anyone who has just found that they have AIS: you are still you, the person you have always felt yourself to be, and you can be yourself no matter what that means.

This is all probably rather incoherent but I hope it makes sense to someone.