|I cannot remember a time when I didn't know I was different.
I believe I am intuitive most of the time. One of my earliest recollections regarding my syndrome is sitting in the bathtub, weeping. I was weeping there, waist-high in water, at the age of 6 or 7, because I felt betrayed. I was positive that I was "supposed" to be a boy and my mother wouldn't tell me. The only reason I felt this way was because a testis had descended into my labia majora. There it was, this half walnut, making me feel like a freak. I didn't know what it was; all I knew was that my sister didn't have it and it looked more like a boy's testicle than a girl's vagina. I didn't like it. I cried about it a lot when I was alone.
I was born with double hernias, one being repaired at 2 months of age and the other at 10 months. My mother was told by doctors to be as honest with me as she could while I grew up. My older sister was told she would have babies "here" (as her tummy was being rubbed) and I was told I would adopt. At a very young age, I had no trouble accepting this fact. My mother claims she knew that I was sterile but that she did not know I was CAIS. I did not and do not believe her. She knew. My mother is a registered nurse. She knew. This entire topic was never discussed in my home, shrouding it with shame and secrecy, in my mind. My parents did nothing to prepare me for any of what I might encounter in AIS life. Part of that is due to, I believe, the fact that I am their daughter, plain and simple. I believe they saw me as "whole". What difficulty could there be?
At the age of 9, my mother told me that we would have to visit Johns Hopkins University (JHU) so that the doctors could check on me. I felt the grip of panic start to grab hold of the back of my neck. I was so embarrassed of my difference that the idea of anyone looking at me was enough to start an overwhelming emotional response. I wept and wept but had no choice - I had to go.
My mother, father and I went to Baltimore and my genitals were examined by Dr. Blizzard, other endocrinologists, other surgeons/doctors, more residents and medical students than I can count, etc. Then I had to be examined by Dr. Howard Jones. I was lying on the table, spread-legged, with my feet in stirrups. The nurse came over to me and insisted upon holding my hand. I thought this was a nice gesture but I didn't know her and thought it unnecessary - unnecessary until the moment arrived when Dr. Jones broke my hymen, that is. The pain shot through my body like a bullet searing my flesh. I was utterly shocked. No one had warned me of what was about to happen. As tissue was ripped from my body, my hand went into a reflexive contraction and I am sure that the nurse is trying to get blood into that hand still, 30 years later. This procedure was performed to assess the length of my vaginal canal and the likelihood of future vaginoplasty, as I later found out.
I didn't stop crying for hours. It was not a loud cry - it was a soft, mournful, visceral cry. My father is not the most patient of men and I remember him looking at his crying daughter on the sidewalk outside Johns Hopkins and saying to her, "What are you crying about? Don't you know they are trying to help you?" I'll never forget those words or the tone with which he used them. My father never came along on any future trips to Baltimore, even when I had my surgery.
I bled the entire trip home. I was losing so much blood that I thought I was going to bleed to death. My mother tried to reassure me but in the light of what seemed like pints of blood, words are not very powerful. I would never be the same after this first trip to Baltimore.
Part of me died.
Trips to Johns Hopkins occurred roughly 18 months apart. Each trip evoked the same response in me. It was hell. I hated everyone there although I knew that no one was trying to hurt me. The most humiliating part, I think, were the photographs. I am sure many people reading this have seen the medical photographs of people in which their eyes are blocked out, in an attempt to hide their identity. Well, one of those pictures might be me. I was nine years old when I had to have medical photos taken at JHU. My mother tried to joke with me that I was posing for Playboy. I failed to see the humor. I had to stand naked in front of a white wall with height markings etched on it. "Please turn to the left". "Face forward". "Please turn to the right". "Face the wall".
Then I had to lie down on a table while the photographer zoomed in on my spread legs and exposed genitalia. My mother had to assist in spreading apart the lips of my vagina so they could get an even more graphic view. I was so embarrassed. I was so ashamed.
My meetings with John Money, MD were, apparently, not very memorable ones. I remember him but I don't recall anything he said when I was a child. I do remember him giving me a very long questionnaire to fill out at home and send back to him. I never did it; I thought all my answers were foolish. I had my IQ tested on my first trip to JHU, which highly entertained me. I genuinely liked the woman (Mrs. Clark) who administered the test. Most of the questions were math problems or puzzles. I had fun with it.
Dr. Money, I remember, treated my family well on these visits. He never once charged us for the visits prior to my surgery and never billed the insurance. I understand that some people have had difficulty with him but I am not one of those people.
My JHU visits continued until finally, at age 15, my surgery was scheduled. The testis was removed and the vaginoplasty was not needed. I was actually happy to have the surgery as I felt much more "normal" without the testis.
I remember being sad all my life.
You would never have known that if you knew me. I seemed like a fun, outgoing, well-adjusted little girl who was popular, athletic and smart. But I was sad. When I was 14, I developed an eating disorder. It started out as anorexia nervosa but developed into a full-blown case of bulimia. This coincided with the fact that I had my first boyfriend and started a sexual life. Perhaps the eating disorder was a subconscious attempt at putting off my sexual development. Perhaps it was the result of unconscious struggle with my suspicions concerning my syndrome. I still don't know. The eating disorder grabbed hold of me and has never really let go. It will be something I struggle with for the rest of my life, I am sure.
When I was 15, I began my preoccupation with suicide. I would think about how lovely it would be not to have to struggle with any of this anymore - my feeling like a freak, my eating disorder which was uncontrollable at that time, extensive family problems, etc. Then I went to a movie, which dealt with death and life after death. I have never been a particularly religious person but this movie made me dispel all thoughts of suicide. It depicted the experiences of those who had near-death experiences and when I saw what the suicide victim experienced, I knew I would never attempt it. It wasn't worth the risk or I wasn't depressed enough. At any rate, I wasn't going to take the chance. If I hadn't seen that movie, I think there is a good chance that I would not be here today.
As I said, I was 14 when my romantic life began. I couldn't believe it when Bob, a good-looking 17 year old, fell in love with me. Me! I was not in love with him but was in love with the idea that someone could care for me so much. I have never thought of myself as physically attractive and was shocked that someone else did. I knew that I couldn't get pregnant and was very sexually curious, so I relented and stopped thwarting Bob's advances. The idea of anyone seeing me naked prior to that was abhorrent to me. Bob didn't care that there was a lump in my vaginal fold (Bob is the only one to behold that sight) or that I had sparse pubic hair. Bob thought I was beautiful, God bless him. Since that time, I have always had an initial hesitation to be naked in front of lovers but it is quickly overcome after that "first time". No lover has ever shrieked in horror at the sight of me, much to my surprise.
I will say this: although I was sexually curious at a young age (who isn't?) and I gave in to that curiosity, I don't think I was truly ready for an adult sexual relationship until I was in my twenties. Suddenly, at that age, my sex life took on a whole new and wonderful meaning. Perhaps it was that inhibition was lost, I don't know. Perhaps it simply came with a degree of maturation. Maybe not. I still can't undress comfortably in front of people who are not lovers, family included (so much for maturation?). I have never married. I don't think the right man exists for me.
When I was in college, I still had many of the problems that existed as an early teen. I was confused and angry. My roommates were not treating me fairly in the room and would not listen to reason. I became angry and lashed out at them by stealing money. The crime was discovered; I confessed, suffered the consequences, left the room for another and went back to Johns Hopkins University. It had been 6 years since I had been there and I went to see Dr. Money. It was at this time that Dr. Money told me I was CAIS. I was 21. I only remember him telling me of my syndrome, nothing else. I was with him for one and a half hours and I remember absolutely nothing else of what he said. I heard "Androgen Insensitivity Syndrome" and that I was genotypically a male. From that point on, my mind was reeling, hearing nothing else. I thought about that 6 year old crying in the tub because she knew she was supposed to be male and I was amazed. Wasn't this science fiction? Dr. Money told me this now because it was his belief that I might subconsciously be struggling with this, which is what caused me to steal the money and behave inappropriately. Maybe he was right; I have never done anything like that again.
I find it very interesting that I am a scientist and that I did very little research to discover more about my syndrome. For years I just avoided the words and thoughts. Denial was my middle name. When I was 25 and in medical school, Johns Hopkins sent me my medical file. It was considered a dead file as it had been over a decade since I was there for medical treatment. I went to my gynecologist (a new one) soon thereafter, having discovered a lump in my breast. I brought her the file. I had not read it, gave it to her so she could become familiar with my case and asked her to hold it for me. I was not ready to look at it. The lump, it turns out, was fibrocystic disease, probably as a result of estrogen therapy. Two years later, I was interested in reading my JHU medical file. I called my gynecologist to tell her I was coming to the office for the file. It was at this time that I was told they lost the file. They had no idea what happened to it. I was mortified. Now, I would never know exactly what the medical professionals noted during all of those visits. To this day, I am still very disappointed.
* Sometimes, I feel like an unfinished person *
I've done a fine job of ignoring my syndrome. I think this has been a very big mistake. I am now over 40 years old and think that I have never really been happy. I have had happy moments in my life, to be sure, but I think that I have never generally been a happy person. Maybe it is because I have not confronted this part of me. I hope to start my journey and either put it to rest or happily incorporate it into my life. I think it's time I learn to embrace myself.
I am new to this despite my years. I have no strength or real wisdom to offer others, unfortunately. I do say this, though, to those who are young and, perhaps, new to discovering this part of themselves: Do not ignore it. Do not play "ostrich" as I have. Learn vicariously from my mistake. Learn about your syndrome and deal with it the best way possible. Ask for help, if you need it. Don't let shame and embarrassment guide your decisions, as I believe they have guided me.
It's later than you think.
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Last update: 22 January, 2014
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