Madge's Story

[Received March 2003]

I am a 21-year-old and I'm not sure if I have CAIS or PAIS, but I know I have AIS of some sort. Based on what I've read on others' personal stories, I probably have CAIS but I would need a doctor to know for certain - which I'm TERRIFIED to go see. I do feel blessed that I've had much support from my mother, and although my dad and sister know about my "condition" they haven't mentioned it and have always treated me like a normal human being. You know, my heart goes out to all those who have had extremely painful experiences with this condition because as far as I know, probably no one outside my family is even aware that I have it. In fact I'm willing to bet that if I told people about my having AIS today they would be surprised. There is no outward evidence to counter the fact that I am no doubt a female (other than perhaps my flat chest).

But in spite of all that, there have been many times where I've been very secretive, repressed, embarrassed, uncomfortable, etc.- especially teen years. I'm still not very comfortable talking about all this. I have never been on a date in my life (and quite frankly, few guys have ever really expressed interest in me, it seems). Whenever the topic of dating, kissing, sex, etc. come up, I can imagine what other women are feeling, but cannot identify with them directly. I usually get uncomfortable talking about sex. And whenever someone asks me if I have a boyfriend or anything I always get real nervous and weird about it just like a child would. As a teen in gym I got real nervous to change clothes because other girls were developing properly and I wasn't. but being the creative person I am, I devised ways to change without anyone noticing me (like changing underneath a shirt, or waiting until everyone else was gone). Indeed, sex in general has always seemed like foreign territory to me. or perhaps like fine art in a musuem - to be observed, looked at, admired, but not touched - I know I will never have sex, let alone children the natural way. But I know without a doubt that I am female and I feel like a female. I am attracted to guys, not other women, and I wear makeup and somewhat feminine clothing. But there are some areas in which I feel more androgynous than other women.

My "condition" has never been completely hush hush in my immediate family. True, there is still a lot that I don't know about my early records as a small child and everything, but I've never felt like my family has been deliberately keeping anything from me. Supposedly I was constantly in the hospital between ages 2-3 for various reasons and the doctors thought I wouldn't live much longer (which could account for some fear of hospitals to this day). When I was about 13 years old, I went to see an endocrinologist (who was actually a pediatrician even though I could've seen one for adults at that age). He was very nice compared to horror stories I've read in this support group. I was EXTREMELY scared to get checked by some stranger, but it was over soon enough. I was taking estrogen for some time, but since I was involved in school and everything as a teenager, I neglected to take them (which is not a good idea folks!). One day I will eventually need to see another doctor and I will want to continue taking estrogen. But college and fear have gotten in the way. I wish I hadn't stopped taking the pills!! I've never had counseling or anything either.

In short, I guess I can say that my life has been rather normal. My faith in God, loving family, and many talents (particularly in the arts) have pretty much rendered most of my "AIS problems" negligible. Or perhaps I always try to see my condition as something special or unique. Angels are supposedly androgynous, you know! People have always commented on my "smooth skin" since I was little (I guess due to lack of hormones). As much as I love children, the idea of monthly disruptive periods, cramps, and hours of labor don't exactly appeal to me. I don't have to worry about those things. There's always adoption. But I'd be lying if I said that I didn't dream of one day meeting Prince Charming and being able to have sex (I think about it all the time) but I try to see my condition as a blessing rather than a stigma.

"Madge"