Please note: All stories shared here are the opinions expressed of the individual writers and they may or may not reflect the views of the AIS-DSD Support Group board and membership. We hope to publish stories that are useful to others in a supportive manner.
I started growing up when I turned 33 and learned my diagnosis – Complete AIS. I learned it by reading my medical records which said I was a “male pseudohermaphrodite” with “testicular feminization”. What a way to characterize a person – and how far from the mark they were! I always knew I was a woman, and I can never be a pseudo anything.
Growing up, all I got from my parents and doctors were lies or evasions. “You just won’t be able to have kids, but you can adopt. It’s no big thing, but don’t talk about it with anyone. No, it doesn’t have a name. No, there aren’t any other girls with this; it was a random genetic thing. Why do you want pubic hair, you don’t need it for anything.” I knew I was being lied to, and concluded that it must be so horrible/shameful that neither my parents nor my doctors would talk to me about it. Without their candid support, and in the absence of the companionship of other AIS girls, there wasn’t a way to understand and cope.
Fast forward to today. It’s not a bad secret in my life anymore. I do mourn the loss of fertility, as well as the years I lived in fearful and depressed darkness. AIS caused the infertility, but misguided parents and doctors fostered the rest. I now know that the worst thing about DSDs is what people FEAR others will think about it. So many of us boxed ourselves in with those fears, and often experienced life less fully, less joyously, and more cautiously. But I don’t do that anymore. Confiding my story to friends and family has only deepened and improved my relationships with them. And as for my Y chromosome, so what? As Temple Grandin put it, “I am different, not less”.
Coming to grips with AIS has made me more tolerant and empathetic, and has forced me to confront and eradicate my worst prejudices about myself and others. It has taught me acceptance, and strengthened my general sense of who I am. A day doesn’t go by without my thinking about AIS, and being childless. The critical difference is this: I used to wallow in AIS, whereas now it’s just one facet of me.
I am committed to ending the stigma, and the often poor medical treatment of individuals with DSDs. Working with the AIS-DSD Support Group For Women and Families, I am helping to spread the word that meeting others with DSDs is essential, and that getting good psychological counseling is important. I’m also working with doctors now to promote positive changes in the standards of care for DSD individuals, and in disseminating more accurate information about the DSD syndromes.
Nearly 30 years ago at age 15 I had surgery to remove my gonads and avoid “cancer,” and was told I was probably the only one in the world with a rare condition, and I’d never be able to have children. I didn’t question it then, just did what the doctors and my parents told me to do. What I did question was whether I’d ever get married and have a family – a common dream for a young girl.
Happily, I have been married for nearly 20 years and have beautiful adopted twin daughters!
We all have our own stories, and mine is not that uncommon …I did not discover my Androgen Insensitivity Syndrome (AIS) diagnosis until age 42. Although shocking and scary at first, finally seeing my medical records and understanding my true condition answered a lot of questions for me, and helped me for the first time to really know who I am. I am a wife, a mother, a daughter, an aunt, a lawyer and photographer… and yes I am a real woman.
Now I also understand that my path to becoming a woman was special, and one shared by hundreds of other woman. Finding the AIS Support Group was one of the best things to ever happen to me. Through the website, email circle and annual conferences I have learned so much about myself, my condition, and best of all I am meeting amazing women from all over the world with Disorders of Sex Development (DSDs) similar to mine. I am not alone. And neither are you.
If you are reading this and hesitating about contacting the group, please take my advice and just do it. You will be so glad you did. It will change your life. And you will have hundreds of supportive “sisters” ready and willing to support you at your own pace and discretion. It’s a personal journey, but one that is so much easier and fulfilling when shared with others who “get it”.
If someone offered me a magic wand to wish away my AIS, I would absolutely NOT do it. Without my AIS, I may not have met my wonderful caring husband; I may not have my two beautiful loving daughters, and I definitely would not have met all the amazing women in this amazing group.
The only thing I wish, is that I had learned my true AIS diagnosis sooner and joined this group years ago. Hope to meet YOU soon.
Wishing you peace and acceptance,
My name is Joyce, and I was born in 1965. I first learned about my AIS status after I was genetically tested at about the age of 12, as there is a history of AIS in my family. However, at that time, the term was testicular feminization syndrome. I had my surgery (orchiectomy) when I was 12 years old. At no point did my parents or physician tell me why I was having the surgery, and it was at the age of 37 that I learned the full truth about AIS after reading through some medical records I had in storage. Having never gone through a normal puberty as my friends, I felt isolated, confused and ashamed. I wish my parents had learned more about AIS, and sat down with me and my physician to explain the details of AIS. By far, the worst part of AIS for me was growing up feeling different, and not understanding why I wasn’t able to have children. The only explanation I received was you have a family condition, you cannot have children, and here’s a bottle of premarin that you will have to get refilled for the rest of your life. The best part of my AIS journey is being able to talk to my sister about AIS, and sharing common experiences. It was amazing to talk with her after I learned the truth, and finally have a family member that understands and speak so openly about the “family secret.” Also, finding the e-mail support group has been a HUGE benefit to me. I’ve learned so much about HRT (and how amazing it was to learn about other options besides premarin!), and worked up the courage to speak to my physician about AIS. My original physician retired to Florida a few years ago, and I was fortunate to find a new physician that has been sensitive to my needs and willing to share any information she has. In turn, I’ve been able to provide her with information that I’ve attained through the e-mail circle and the support group. I have been happily married for 13 (lucky 13!) years, and I’m very lucky to have found a husband who loves me and is very understanding about my AIS “status.”
As a “glass half-full” kind of person, I’ve created a list of things I am extremely thankful for as a woman living with CAIS.
- I live in an age where women are not considered useless if they cannot bear children.
- I don’t have to spend money every month on any napkins unfit to wipe one’s mouth or wads of cotton with strings.
- I can always have sex!
- I am blessed with the unconditional love of an amazing man with whom I am going to marry in two months.
- I do not cramp or fluctuate hormones levels with the phases of the moon.
- I am a rare, beautiful, and blessed.
I recall at about twelve years old, painfully inserting one of my sister’s tampons into my tight undeveloped vagina as practice for my “moment” which I assumed would occur any day (as all of my friends had already experienced theirs). By fourteen, I was mortified that I hadn’t had my momentous occasion yet and decided to fake it before anyone questioned my normalcy. I chose just the right moment… after school, to notice blood on my underwear. I came out of the bathroom and told my mother that I’d gotten my period. A sadness came over me that I did not quite understand at the time as those words came out of my mouth. It would take two more years before I was ready to admit I had never experienced a period.
At sixteen, my mother wanted me to see a gynecologist for the first time. Panicked with the idea that my lie would be discovered, I begged her to put it off. I came up with every excuse I could think of, but in the end, I ended up fessing up to my mom while in the car with her one Saturday. I remember vividly the worried look on my mother’s face and she informed me that my aunt was born without a uterus and perhaps I had the same disorder. She about ran off the road while frantically poking at my abdomen to feel if I had a uterus. Nothing was felt. I finally agreed to submit to a gynecological exam and blood tests where it was discovered that I had CAIS. I was really fairly okay with the idea, mostly because as I understood it, I was simply born without a uterus. I was not told that I had testes inside me and was genetically male. I was actually told that my ovaries didn’t form correctly and had to be removed due to a higher risk of cancer…a half-truth at best. My parents also told me at the time that I shouldn’t tell people, as they may not understand. I took this to mean that I should be ashamed of the abomination that I was. I suppose it just confirmed my already shameful feelings about my situation. I was so lucky to have had the friends I’d made as a teenager, because on the eve of my surgery (Gonadectomy), I was scared to death and confided in them about my shameful situation. They cried with me, reminded me of how beautiful, talented, fun, and feminine I was, and how nobody worth my time would let it bother them. To this day, fifteen years later, I haven’t forgotten one iota of that night.
Since then, I’ve enjoyed a full, normal, rewarding sex life and now, at 31, I’m going to be married to the love of my life. I’m so glad I am the woman I’ve become. Successful in my career, tons of friends, a happy and healthy family (including a six year-old niece with CAIS who already knows she can’t have children, but likes the idea of adopting), and an inner-peace with myself, I couldn’t ask for more. While growing up and dealing with this wasn’t easy, it wasn’t awful. We as CAIS women are members of the human race, not freaks. We don’t have to feel like outsiders for how we were born.
I am in my middle years, a mother, a wife, a journalist, a lover of the arts, a city girl, an avid hiker/skier/swimmer, a Canadian. And, yes, I happen to be completely insensitive to androgens. When I look back on my life and my struggles with this condition–yes, there were significant struggles when I was younger–I see much of my internal “work” as a process of beating AIS down to its appropriate size in my life. AIS was huge and monstrous to me when I was first diagnosed (incomplete truth at 19, full disclosure at 24 after I’d spent a year struggling to find out the truth). I feared it would deny me love and intimacy, not just with men but with other, “normal” women. I blamed it for my emotional problems: sometimes paralyzing insecurity and lack of confidence, anxiety, mild depression, intractable loneliness. When I was in my 30s, psychotherapy helped me realize that while AIS had done nothing to bolster my confidence, it wasn’t the root of my issues, and I examined the impact of my very troubled family on the person I had become. I realized that the pain and insecurity engendered by my often tortured childhood coloured the way I dealt with my diagnosis: already believing myself to be unlovable, I regarded my condition as the decisive factor in my being some sort of untouchable.
I had already told my boyfriend the truth about me, and he was completely unfazed by it. I began to tell my female friends, and our relationships deepened as a result. In relationships with other men, I found the build-up to disclosure to be absolutely terrifying, yet none of these men reacted in a negative way.
I’ve never had any gender confusion and regard myself as someone who came to be a woman by a somewhat different route. Although I’m a strong feminist, I also feel undeniably “female” and definitely have more of an affinity for my women friends, with whom I share similar interests and sensibilities. But I also recognize that gender identity is a very complex and amorphous thing, and I’m friends with several CAISers and normal women who aren’t as “femme-y” as I am.
Since I was very young, I wanted to be a mother, and the crowning glory of my life has been my relationship with my adopted daughter.
I absolutely believe that the life of someone with AIS can be rich and meaningful. But many of us have to struggle a bit harder than most XX women to get the lives we want.
I am 23 years old and at 15 was diagnosed with CAIS. It all started when I was and had a stomach parasite. I was scheduled to have a CT Scan taken of my abdomen. The doctor found a mass, and was concerned. She asked me if I had started menstruating yet and I simply told her no. She was concerned so she set up an appointment for me with a gynecologist. This doctor was terrible and had no understanding of what was really happening. He inserted his hand inside me and pressed firmly down on my abdomen saying, it all seems to be there.
To this day I have to be put under to be examined. He told me I dressed like a boy and I should buy some shirts with flowers and try to identify myself as a girl. He saw the delayed menses as an emotional problem and prescribed me with Zoloft. I threw them away and my mother made an appointment with a specialist at a children’s hospital. I was properly diagnosed and underwent a “gonadectomy” at 15. I’ve always identified as female, and I know that’s what I am. XY means nothing to me.
I am a little nervous about what should happen when I meet the right man, but I know that he will accept me as I am. I am a beautiful, vibrant, young woman, and I know that my inability to bear children means nothing more than a small hurdle to overcome.
The most important thing I could say to someone just finding out about their AIS is that they are not a freak. You are a woman, God made you that way. He just made up his mind a little late!
The Kotex booklet described a “wonderful experience” of becoming a woman; when it didn’t happen for me, the subject wasn’t discussed at home, even among my older sisters-and one of them hadn’t experienced “wonderful” either. If necessary I faked it with my girl friends.
Almost by happenstance I had my first gynecological exam at about 17. I was told that I had no uterus and would never bear children. No name was given to the condition and no tests were done or even contemplated but I doubt that was unusual in the 50’s.
In my mid-thirties I finally was ready to marry. The GYN I consulted could hardly wait to get his hands on me. He was a talented surgeon and the physical part of my three-week hospitalization was painful but tolerable (in hindsight) and successful. The doctor had a large ego, however, and bristled if I questioned anything at all. Almost nonchalantly, he told me that my “ovaries” weren’t ovaries, I wasn’t really a woman, my breasts weren’t breasts and that I only felt female because I’d been raised female-but “don’t tell your fiancé!” Surprised that I was upset, he maintained I should be the “happiest person in the world” now that I had a normal vagina. . I meekly accepted it all-even being on display when he brought others in to view his “beautiful work.”
My age saved me. Had I been a younger woman, his approach would have destroyed me. Instinctively I felt he wasn’t completely accurate: I KNEW I was female and the doctor wasn’t God. I did tell my fiancé (but no one else) all the facts as I knew them; we’ll celebrate our 30th anniversary this March. It was only upon the doctor’s death when I retrieved my medical records that I saw the term testicular feminization applied to me. I wasn’t surprised, having previously encountered the term in a college textbook and made a self-diagnosis.
As usual I discussed this with no one. Life was easier if I pretended to be normal and could avoid having to explain things I couldn’t explain. I think being different has made me more sensitive to others who might not meet society’s norm. With family and friends I’m most often upbeat and jokingly self-deprecating but I’ve learned to live with a little sadness inside. I know others do, as well, and for a variety of reasons.
As a niece with CAIS matured, she was the one who educated me. The first in our family not to shy away from the facts, she introduced me to the new AIS terminology and directed me to the web site. Thank goodness; maybe it’s happy time.
I have Complete Androgen Insensitivity Syndrome. I had a hernia at the age of four. Even after surgery, I got another hernia on the other side of my upper pelvic region at age six. At the same time I had the surgery to close my intestinal wall and prevent the intestine from slipping out, I had what is referred to as a “gonadectomy.”
My mother explained this to me at age twelve by stating that my ovaries never fully developed, that they had been taken out during the surgery, and that I wouldn’t get a period, couldn’t bear children, and would have to take estrogen to grow breasts. I began seeing an elderly male doctor who prescribed estrogen, explored my vagina to make sure it was suitable for sex, and did a bone growth, which revealed that I had the bone maturity of a small child. Junior high was excruciatingly painful for me, as my friends grew pubic hair, got acne, grew breasts, and talked incessantly about their periods. I endured much teasing from my “best” friends until I finally lied that I had gotten my period in the eighth grade. I lied about it all through high school.
My senior year, I read an article in “Mademoiselle” magazine about a very brave woman with PAIS. I got about a quarter of the way through the article before realizing that she sounded a lot like myself. I woke up my parents, who became scared out of their minds that I had brought this topic up. I mean, you could literally see the fear in their eyes! Finally, after my mother had lied and told me I did not have XY chromosomes, my dad told me the truth. I honestly wanted to die. I looked it up in the medical dictionary: “Testicular Feminization Syndrome.” That word, testicular, made me so upset. I felt like I was merely masquerading as a girl, that I didn’t qualify as a girl OR a boy. To make matters worse, I entered my favorite class one day only to find a nasty girl telling everyone about the story in the magazine, and saw their disgusted expressions. I just wanted to shout: “I can’t help being the way I am!” I had no idea that I would ever meet anyone like myself. I was severely depressed, and had to start therapy. My therapist likened me to a transvestite, which made me retreat further into depression. The combination of a great pediatric endocrinologist who thoroughly explained my CAIS condition without attaching any “stigma” to it, and the fact that I disclosed my CAIS status to the girl who remains my very best friend while we were in college helped me to come to terms with who I am.
I have told several female friends, my sister, and have even discussed it with a favorite aunt and my grandmother, who both knew bits and pieces of the family “problem,” if you will, but needed particulars. The odds are quite good that one of my cousins will have a child with AIS, and if that time comes, I look forward to helping her and her child through it. The New Rare Orchids e-mail circle really feels like coming home. Sometimes I am struck all over again at the thought of being in contact with! women who are like me! It feels so good to have proof that I’m not the only one. As much as I have come to accept my CAIS, I still have intimacy issues, and am rather afraid of men. I have not had sex yet, which is something I am incredibly scared of. I am afraid of how a man would react to me not having pubic hair, I worry that my vagina is not big enough, and I just am not comfortable with my body. I hope to overcome these hurdles soon! In the end, AIS is a large part of who I am, but it certainly doesn’t define me. I am also a teacher, a feminist, a lover of books, a caring person, an animal lover, a great friend, a funny chick, and a proud bleeding-heart liberal. My advice to a woman just learning about her AIS is to seek out knowledge, and the internet is a great tool. If you are reading this, and are sad and confused, and just want someone to talk to, please, please, please join our e-mail circle. I, and everyone else in the group, will welcome you with open arms
Perhaps it was at age 14, when other girls were menstruating and developing as women, I knew I was far behind them and had an inkling somewhere in my psyche, that I would not be joining them in this rite of passage – but also with some doubt that maybe I was just lagging in this passage and would begin my journey soon. By 16, I still had not had a period. I was taken to a doctor by my mother. The doctor did a pelvic exam – not with my permission but my mother’s and I ended up crying hysterically through the whole episode; knowing nothing more than it was doubtful that I would be able to have children.
At 18, I underwent another pelvic exam but this time I was anesthetized and in a hospital. I couldn’t face another exam while I was awake. It was too traumatic for me. I found out I did not have a uterus and definitely could not have kids. Not long after, I visited my father, a physician, and on the sly, read his medical book on gynecology. I found a name for my condition – testicular feminization. What I didn’t realize at the time was that my gonads were not ovaries. I had been sheltered from this information.
At 26, I had to have a gonadectomy after learning from another doctor, that there was a threat the gonads could become cancerous if left inside me. So I had it done. The outcome of my surgery was that my body changed somewhat in that I lost elasticity in my vagina and my libido disappeared.
I don’t believe that this condition restricts one from having a happy life. I’m married 31 years to a wonderful man and have an adopted son. The realization of our genetic makeup is difficult to accept but doesn’t define who we are as women. I feel completely feminine. The most joyous thing is that I discovered there are many women who share my condition – that I’m not alone and I have many sisters in this world.
I underwent hernia surgery as a toddler. Fortunately, no tissue was removed. In my teens, I asked my doctor for birth control even though I had not started menstruating. During my gynecological examination, the doctor mumbled “This isn’t right at all” in response to my short blind-ended vagina. Following a laparoscopy, I was told that I didn’t have a uterus and that my ‘ovaries’ did not appear to be normal. The fact that I had testicular tissue inside my abdomen was concealed from me. Sensing that I was being lied to, I went away frightened and abandoned the issue for five years.
I married a wonderful man in 1976. Under the guidance of a sympathetic doctor, I had extensive tests and an orchidectomy at 24. I was prescribed Premarin following a brief consultation with an endocrinologist and genetic counselor. As to my diagnosis, my doctor struggled with whether or not to tell me the truth, including my 46, xy karyotype, and ultimately decided to do so. I initially took the news very well but completely fell apart later. I wailed from such a primal place. It was as if all the grief in the world poured out of me. I now wish my doctor had arranged ‘after care’ so that I could receive immediate and on-going counseling.
I fell into a 25 year spell of deep denial. Shame and secrecy about AIS fueled depression and feelings of inadequacy. I avoided seeking medical attention even when seriously ill, much to my detriment. Eventually, a wonderful doctor encouraged me to take steps to come to terms with my diagnosis, prompting me to reach out to other AIS women and start to put the shame away for good. I am so glad I did.
I was 15 and hadn’t started menstruating. My pediatrician thought this a bit odd and sent me to an endocrinologist. A little poking and we got a phone call to set up surgery. I was told that I needed my ovaries removed because I was at risk to develop cancer. The risk must have been high and imminent, as I was taken out of school mid-year for what seemed like “emergency” surgery.
While I was in the hospital, I was given lots of sage advice. When I got back to school I should tell people that I was having my appendix out (for a month and with a 10 inch scar?). I also would need to always be under a doctor’s care, but unless the doctor was an endocrinologist, I shouldn’t tell him/her the truth (that I had my ovaries out? Shouldn’t they know?). I also shouldn’t tell friends or future lovers about my inability to bear children, until I was proposed to. I would, of course, have to tell him, and if he dumped me-well he wasn’t worth having.
I went away to college, avoiding intimacy at all cost. While studying, I came across testicular feminization. I was stunned. It could have been me in the book. I went back to the endocrinologist and asked point blank if I was XY. Her response was akin to, “well, duh!” Apparently my parents were supposed to have informed me of this.
I tried to make relationships work, societal pressure and all, but never felt comfortable with the whole intimacy thing. Celibacy is much easier. Twenty years later, I’ve told some friends about me, joined the AIS group, and started seeing a doctor-who thinks I’m interesting, but as the hospital “lost” my records, can’t shed any light for me.
I was born looking like other baby girls, and my intersexuality was not uncovered until age 17, when I visited a doctor since I did not menstruate. My doctor discovered I had male gonads and XY chromosomes, but — following standard medical practice in the 1970’s — lied to me about what they had found. They simply told me I couldn’t have children due to a “birth defect”, but there was nothing to worry about, as I was a completely normal female.
I did not learn the full truth and the significant health risks of my syndrome until age 34 in the early 1990’s.
I have the complete form of Androgen Insensitivity Syndrome. Standard medical protocols today urge individuals with AIS to have our undescended testicles removed in our early 20’s to prevent testicular cancer at mid-life. Had I not become inquisitive on my own at age 34 about my medical needs, I might have developed cancer and died very prematurely – no thanks to these doctors. I had my gonads removed in 1992 and have been healthy ever since…
Although most AIS women are heterosexual, I identify as a gay woman. I have found that the frequency of lesbians in the AIS community are similar to the U.S. population at large – about 10-15% of us AIS gals are lesbian. The majority are straight, married women who are attracted to men and, many choose a husband and adopt children to create their own family.
I lived with my first partner, for 20 years, and cared for her until her death in 1995. I have now been in a committed relationship with a woman for the past six years. We held a commitment ceremony in the summer of 2001 and are very happy together. It was hard telling both my partners they were with a girl who was “female on the outside, but with male genitals on the inside” – but they both loved me, and they both told me that it made absolutely no difference – of course I didn’t tell them this on the first date, I waited some months until I knew that the relationship was very serious but before any permanent commitments had been made. But they knew the full story, and were totally okay about it! I am no longer ashamed of my AIS status, and tell others that I trust, the whole story. I know we were just born this way, and I believe that God meant for me to be a woman – I just took a circuitous path to become one!
I first learned about my complete AIS status when I read about AIS in a college textbook. It seemed to match my condition so I confronted my mother. She told me that I do have AIS. I have kept the condition a secret from most people other than my family. I do not believe that full disclosure, in modern day society, is always a very safe option. I wish my parents and doctors had told me as a young teen that I had AIS before they removed my gonads/testes. I thought my testes were ovaries. I believed the surgery was depriving me of a chance to have children via uterine transplant.
There are many hard parts of having AIS, but some positives ones as well… For me the hardest part of having AIS is not being able to have biological children. But the positives are many — yes, I like being a woman rather than a man. I am grateful I do not menstruate. And AIS ran off the “wrong men” who might have otherwise married me – making way for the right one!
If I had a niece just discovering her AIS I would tell her that she has company. I would tell her she is a beautiful and wonderful young woman. I would tell her that it will take time for her to adjust to the news, but that she can have a fulfilling and happy life like mine.
I do take care of myself better in terms of medical and emotional issues now. I share my feelings about AIS with my husband and family. I love being alive. I believe I am one of God’s creatures just like the standard XX females and XY males.
P.S. I loved meeting Dr. Charmian Quigley at this summer’s conference in Palo Alto and also meeting others who have AIS.
I have complete Androgen Insensitivity syndrome. It was discovered when I was 3 months old due to having a hernia surgery. Although I new that I was different I did not find out all of the details until I was about 12 years old. My mom and I went for a drive and she explained everything to me and allowed me to see my medical records. Even as a small child I knew that I could not have kids so I never allowed myself to have the desire to give birth. No one in my family has AIS and for most of my life I thought that I was the ONLY one.
From the time I found out about AIS I never really thought about it. As far as I was concerned I was a girl who could not have kids. The older I got and the more I thought about it, the more the negative thoughts came creeping into my mind. Am I a boy? Was I supposed to be a boy? I have male DNA , I am really a boy. Over time I have learned how to deal with AIS because I was born this way, I am a girl, there is NOTHING I can do to change myself. I can only change the way I feel about myself. The way I deal with having AIS is knowing that it could be worse. There are so many other medical conditions that I could have that would prevent me from having a life. The hardest thing about having AIS is not being able to have kids. If I could have kids and I decided not to, it would be different because I would have the option. I just would like to have the option. However, knowing that I can’t have kids has made me think of other options such as adoption. I am a huge adoption advocate and I don’t feel like you have to share blood in order to be someone’s mom.
For a long time I thought that I would never be able to get married because no man would ever accept AIS. After talking to MARRIED AIS women I realized that I was wrong. I now know that there is someone out there that will love and accept me for who I am. I also had religious issues for a long time but I finally came to the conclusion that God loves me and made me this way for a reason. God does NOT make mistakes.
If I could give advice to any parents, it would be to always be honest.
1-Don’t hide anything from your child. They are not going to blame/hate your for giving birth to them. They will hate you if you lie to them and they have to find out about AIS on their own. Do what you can to help them find out everything about AIS.
2 – Put them in contact with someone who has AIS. It will be good for you and for them because they have questions that you can’t answer no matter how much stuff you read about AIS you don’t know what its like to have it.
3-Don’t blame yourself, for a long time my mom felt like it was her fault and that she had done something during her pregnancy that caused me to have AIS. It’s no ones fault. You can’t blame yourself for something you have no control over. You wanted your child to be healthy. Be glad that AIS does not prevent them from growing, learning, and becoming a productive person in society.
4- Find a doctor who treats you and your child with respect and who makes your child feel comfortable. I remember the two doctors from my childhood one being horrible who left a dramatic impression and one being great man who changed my life. I recently contacted him by e-mail after 8 years to thank him for treating me so kind. My doctor would always tell me things like “your 100% female and don’t worry about not being able to have kids cause you can always adopt”.
If I had a niece with AIS I would do whatever I could to assure her that she is not alone. I would tell her that she is NOT male. I would want her to know that she is NOT a freak. I would not want her to let AIS have so much control over her life that she thought about it everyday all day. I would tell her that no one can tell by looking at her that she has AIS. I would want her to love and respect herself and not to turn to drugs or sex. I would tell her that she does not have to have sex just to prove to herself that she is a girl. What is normal? Within our group…we are normal everyone else is different.
I hope this can be of some help to someone.