Carolyn's Story

[Received June 2000]

My name is Carolyn. I am 53 and have Complete AIS. And this is my story of AIS experience, of that aspect of my life, more and less... :)

Because I guess I had no hernias in early childhood, I had no advance clue (nor did anyone) that puberty was going to be a non event and an atypical loneliness-making experience for me. The years from, say, 13 to 17 were deeply troubling in some inner life that I kept totally to myself as I struggled with the trauma of, for example, no period to announce in swimming class roll call -- and wondering WHEN friends (or worse, gossipy non-friends) would finally figure out that I was never saying "regular" (boy, is that word a curiously loaded indexing of normalcy!) -- and inner dialogues with myself as to whether I dared to lie (but, no, I'd surely be found out somehow -- someone would suspect and inspect me and I'd be shamed even worse)... so I just bore the indignities of the 'lineup' and of communal showering--spending energies on learning to wrap in skimpy towels and slink into corners of the shower where I could face a wall...

At age 14, in the first medical probing to determine why I hadn't menstruated or 'developed', a basal metabolism test showed I was at minus 36 on a scale from minus 50 to plus 50, and I was given thyroid pills, and I prayed that would be the solution. Plus my mom remembered starting to menstruate at only 16 or so (she had been 38 when I was born), and so I waited--and endured....

In senior year of h.s., at age 17, already 2 years after the indignities of sophomore year required swimming class, I was sent to the coldest-fish gynecologist imagineable and scheduled for 'exploratory surgery' 3 days after I graduated from high school. You know the findings. But neither my parents nor I did. We were only told that I'd have no children, would never have a period, would have a 'normal' sex life, but they were sending off "tissue" of what they then said was ovary for testing. My parents' first and almost only words to me after we left the doctor's office with the new "knowledge" were: "Don't worry, we won't tell anyone, we won't even tell your brother, no one needs to know." Yowsa. Emblazened in my soul and spirit from that day til age 41 was a to-be-compounded/worsened-later message that I was 'not okay', that I had something to hide. I didn't and don't blame my parents for that, but rather the doctors who didn't help them as well as me to have a more healthful spirit and perspective on it all. Not to mention that none of us had 'the truth.'

But something in me was already defiant of the silencing that authority-figures would impose if they had their way, and even before surgery #2 (on the eve of departing for college, results came back that I needed a second surgery to remove the nonfunctioning "ovaries" to avoid cancer risk, and it was scheduled for Christmas of my college freshman year), I told my new best friend in college (and the future mother of my first goddaughter) about the surgery I was going home to. She wrote two long banners she hung across my dorm room saying "STRENGTH" and "COURAGE" in huge letters. I think I still have them buried away somewhere. But of course, I could only tell her what I knew, which wasn't much and some of it untrue.

In later years, female friends who I told would sometimes respond with "wow! you could have had a 'free sex' life with impunity, no worries" (in a pre-AIDS era) but what they couldn't appreciate was the terror that made me keep anyone from discovering how different my body was from what they expected. That alone was enough to make any and every date a distinctive kind of anxiety as to how and when to draw a line that would keep me from embarrassing questions...

It was the year following my BA that I met the man I would marry. I had gone to ________ for an MA and had two new roommates there to cope with being open with (about such things as why I didn't have a tampon to loan them), plus in the same apt building a medical student who I knew first and foremost as an avocational painter, and that artist side of him made me find him to be someone I thought was 'sensitive' which I think I unconsciously interpreted further to mean he would be understanding--a 'leap' of extrapolation that would prove to be erroneous indeed...

We were each other's first sexual experiences and, feeling the stigma blazened like a scarlet whatever on my body, I felt I had to immediately tell him my 'situation'--again to the extent I knew it. He said he was fine with that, that there were too many children in the world anyway, that he believed in ZPG (zero population growth, then a burgeoning movement at ________ and elsewhere).... and jump ahead a year: we married.

What a disaster. From nearly day one, not for physical reasons (I have only recently realized that I was a 'lucky' one in that I must have the maximal 2/3 vaginal length for AIS and had little such complication in my life from that particular aspect) but for psychoemotional ones, he proved himself to be VERY traumatized by my 'disorder'--from the night we married, I became his 'exotic property', it seemed, and also someone he felt he had to 'keep silent'... In 6 years that we were married, he refused to ever tell his parents why we weren't having children, while I was totally willing to tell them, and almost told them once on my own but deferred to realizing they were HIS parents and I wouldn't usurp his rights to tell (I knew all too well what that felt like).

When a friend, married and with one child, had to have a hysterectomy in about year 5 of our marriage, I went to see her in the hospital and it was unthinkable to me that I wouldn't share with her that I had had what I still thought was the same basic surgery she'd just had and to empathize with her. When I went home and told my MD husband (by that point, he'd become an ER physician), he blew up (as he often did about almost everything) and was furious that I'd told and if I ever dared tell our other closest friends/couple, where the husband happened to be his ER-room partner, he would never forgive me. Gosh. It was disconcerting to say the least.

Then came the night at some point, nearly 6 years down an ugly road of a marriage that I had struggled to keep afloat even when he refused to seek counseling (mostly threatened by the idea that any fellow doctor would ever know about his or our problems--what is this thing that gets socialized about doctors and control over 'knowledge'!!?!?!), when he was in one of his typical rages that often included name-calling, but this time his rage included: "We don't even know if you're a woman!" ... WHAT? and then came like a dagger -- and worst is that it was said in a context that was INTENDED to be like a dagger, to hurt me, to 'lord knowledge of me over me', a knowledge that someone else had of me that I didn't have myself, came the word that felt to me like the AIS equivalent of 'nigger': "testicular feminization." I think I was numb more than anything else, hearing this for the first time in my life and of course the context meant that I had marital problems to deal with that even made this nail-spitting castigation of me with this unheard-of label kind of get buried in the shuffle.

The broader picture of the marriage was such that this was one of many final nails in the coffin and within months after that night I had left him after having been sole-struggler to make the marriage work for 6 years. In the aftermath, I think I even partially repressed the label as maybe not even being true, maybe even invented by a hateful husband seeking to hurt... What I had learned from him was that MY doctor back in ____ ____, where we no longer lived, had confided in HIM as to my diagnosis, knowing that my husband was a medical student (adding that ole-boy-network syndrome into the mix of deciding that HE being a doctor-in-the-making was entitled to know and 'could deal with it' but I couldn't). It took me a few years before I even wrote back to that doctor--in 1982, about 5 years after I divorced.

In the interim, divorce served like something of a rocket-launcher for me, and I had traveled the world on a shoestring with makeshift ways of earning my way, made a living in all the adventurous ways that I think my psyche cried out for to rebel and cast off the world that had lied to me in so many ways, and notably made a lot of loving as well, in an era pre-AIDS-constraints. But back in ___ ______in 1982, I wrote that doctor and sought confirmation of the diagnosis and also boldly challenged him for the outrage I felt at his lousy decision on disclosure--and how wrongheaded he'd been to think my husband was the one who could deal with it, clearly he couldn't and hadn't. He wrote back semi-apologetically and also confirming the diagnosis.

Again years went by as I undertook a PhD program and coincidentally or not entered a near-celibate phase, both of which together meant no time or reason to think much on this aspect of my life. Only in 1988 did a barrage of new health problems of sudden onset around the age of turning 40 lead me to study health issues in depth and put probing questions to doctors which led to finding a geneticist who ran blood tests to confirm what had previously been done back in 1964 at the time of surgery only by buccal smear, and sure enough: AIS.

Then I was directed to the med library and I read everything I could get my hands on. And it was only then, on 8/8/88, the day of harmonic convergence when new-agers were holding hands in far off Macchu Piccu, etc. (which I found to have a certain symbolic value as 'coincidental' timing), I had the epiphany of a lifetime while standing in the doorway of my _ _ _-student-health-center MD's office, during my graduate work toward phd., and I suddenly had processed all that I'd been learning of my diagnosis in a way that made me think "WOW, I always thought I was a failure to be a woman (the notion my husband notably had convinced me of, both in covert zillion micro ways--e.g., constantly monitoring my weight, wanting me to look like Cher and undertake sex like a porno queen--as well as the overt word-for-word indictment of that one night's attack on my spirit) but in fact it was that I failed to become a man! and THANK GOODNESS! I wouldn't want to be anything but a woman, and if I hadn't been androgen insensitive, that wouldn't have been my fate!"

Now 12 years later, I don't particularly like the word "failed" in that epiphany as I think it's better not to think of differences as 'failures' but otherwise I still connect to that epiphany I had 12 years ago that I then rather jubilantly shared with my closest friends. Still at that point, I'd never even met anyone (even an MD) who even KNEW another AIS-er, who'd ever SEEN another AIS-er. But (fortunately) I had just enough newfound extra defiance of the secrecy that I had even discussed my epiphany while standing in an open doorway with that student-health-center MD, not even feeling anymore that I had to speak behind closed doors, AND most important I could share with my closest friends everything I knew, which now finally was truly the bulk of the truth to be known, no longer cloaked in half-truths or bald lies and shameful castigation.

I then set out to track down MDs who dealt with AIS, delighted too that I finally had a new term to use for it -- AI rather than TF-- and I phoned and wrote until my discouragement took new root: NO ONE would lead me to any other AIS-ers. Here I had active health concerns that seemed logically to me (and to some of my MDs) to potentially have something to do with lack of androgen, and yet the doors were closed in my face that might lead me to share experiences with anyone else. I was referred to a pediatric endo at ucla who was alleged to be the most knowing doctor in the area, but she had no help to offer. She said that she herself tells her patients once they reach 18 "Good luck, have a good life, I have no more I can do for you - no one knows anything about adult life effects and I don't think there are any" (implicitly endorsing a non-holistic, oh-androgen-doesn't-affect-anything-else position which simply didn't and doesn't stand to reason, imho, above and beyond my own desire to know if it could account for or contribute to any of the health factors I've been dealing with).

Furthermore, she not only knew of no way to contact any other AIS-ers but she wouldn't even take my name in case someone would even contact her seeking to find others. A brick wall. Compassionate enough (maybe like 'compassionate conservatism' ?? :) but a dead end. Well, except that she gave me the name of a 'leading expert' at U of Texas who I immediately wrote to (pre-internet era still) and wrote 2 or 3 times between 1988 and 1991. She answered taking the same non-holistic view of androgen and seeing no light to shed on my health issues, but also took issue with my additional comment to her in which I urged doctors to see the importance of telling patients their 'real story.' She cited fears of suicide-risk if patients knew the truth, indicating that I was the rare among the rare, that other AIS-ers wouldn't be likely to even know their diagnosis, but she did -- interesting in retrospect -- name Garry Warne in far-off Australia as being the one person in the medical world who was sympathetic to my view of disclosure and patients' right to know. But he was so far away and, again, pre-internet or e-mail, her letter was SO discouraging that I would ever find either answers or fellow AIS-ers.

Once again, I backburnered the whole issue as I finished my PhD and took off to take a tenure-track position in ________, where my health problems reflared and after years of numerous diagnoses and treatments to no real avail, all the while still wondering about the role of androgen, finding no doctor who knew or saw any connection, I wound up at least temporarily abandoning academia, moving back to ___ ______ to care for my mom with Alzheimer's. As my own health deteriorated this year, seeming to become 'victimized' (hate that word) by stress, and now with time to do such a thing as websearching, I finally one day did the thing I'd always thought I'd try oneday, since first going internet in 1993, but had both never had the sense of time and perhaps more significantly had never thought would yield anything anyway, so convinced I'd become that this was the ultimate 'closet' issue that no one would even know about themselves, much less divulge to others, that it was virtually hopeless to think I'd find anything. The operative word being 'virtually' :)).

It was lucky in one way that this hopelessness made me so sure that "androgen insensitivity syndrome" would yield nothing, that I only typed in 'androgen'. The next lucky thing was that among the 9,000-plus hits it got, that lo and behold right there before my eyes, among the very first set of 10 items, was first Garry Warne's booklet, and then just a few items further down was none other than the AISSG. That these two entries were tucked in at the top rather than the bottom or middle of these 9000 plus items was serendipity indeed. For, knowing me, I would have marched through dozens of sets of 10 findings but eventually that total discouragement which doctors had given me, as recently as 1991, that I'd ever find others, that would surely have seen confirmation amid dozens of 'androgen' entries that had to do with things like prostate problems and whatever, I would have given up. I became more appreciative of the serendipity when, having forgotten to bookmark the entries, I tried to re-access them the next time I logged on by now searching for the full name (AIS) and I came up blank. My 10 search engines picked out only the prostate-type entries as relevant, and I had to go back to just typing 'androgen' to retrieve this treasure chest I had stumbled upon.

Looking back from the perspective of age 53, it seems it was only after that epiphany/true knowledge era, at age 41, that I began to escape from certain lifelong plagues on my sense of self, of free spirit... in tiny but pervasive everyday events like no longer concerned in the women's showers after swimming as to who would see me... able to close my eyes thinking about not getting shampoo in them and not even thinking to monitor for who might be paying attention to my 'different' body... could anyone else understand how such a mundane thing might represent 'liberation'? ... a wonderful Rolfer had helped me somewhat earlier, in 1982, to face the issue of realizing that I am not my scar... that may have been one of the hardest issues for me, having received a horrendously ugly 6" long vertical scar not once but twice in 1964, visible in any bikini, but also jagged and carrying the look of having been the result of some kind of butchery, as if that gynecologist had also been misogynist or had treated me as if unhuman...

But I'm not my scar, nor am I definable by any one attribute including AIS, and in the last 12 years, there's been peace about all the AIS elements of my life to the point that if it weren't for zero-energy health problems which seem to be connected to lack of androgen in my system, I probably wouldn't even think about it much, and might not have even done the websurfing that led me to the AISSG, but what a delightful discovery that was, almost unreal given how convinced I'd been made (by doctors) that a support group for AIS would never happen. And the website has already been a wealth of knowledge that has taught me more than even that extensive med-library-search had taught me back in '88. Plus best of all, the 'reality' of fellow AIS-ers who I know I can gain additional perspective from and not just on medical/health issues--already having read personal stories that have brought empathetic tears. I look forward to also doing my part of reaching out and offering perspective to new discoverers of their 'truth' who might be in still-floundering stages of coping.

Like so many other things in life, I think it's the hiding and secrecy and lack of respect to be given knowledge of oneself that is the real trauma in AIS, not the specifics of being distinctive sexually speaking. On the latter count, I would wish to live long enough to see a day when little girls are no longer mindlessly taught that if they are a girl they are automatically xx and will automatically have periods and children and everything else that contribute to setting up false expectations for more people than just those with AIS. But most of all, that the story of AIS might add light to someday convincing people that hiding the thing that makes you different (whatever it is) does much more damage than the difference itself.