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A CAIS 37 year-old group member in the US emailed to other group members in Spring/Summer 98:
I have been having an adventure. I think I have mentioned this Internet discussion site where only health care workers can post to. Its mainly made up of ob-gyns who present interesting cases. Last month they were having a discussion in which they were talking about "women"and "girls" (that's their quotes, not mine) with AIS and how much information about AIS they should tell their patients. Most were not favoring full disclosure and their quotes around the words women and girl were infuriating.
The doctor who started this thread just happens to have his office about 10 miles from my house. He signed his email with his name, address and phone number so I phoned. I told his secretary my name, phone number and that I was involved with the AIS Support Group. He never called me back .... Only one doctor, Allen Gardner, a geneticist in Toronto, Canada, spoke up for full disclosure and against saying "women" [with quotes]. He had also read your article ______ [CAIS 45 year-old]! [Ref 1] Dr. Gardner also signed his full name and phone number so I phoned him. He was happy to hear from me and we had a long chat about AIS. He then offered to post a letter to this site on my behalf. Actually, he posted it to three sites the ob-gyn one, one for around 150 geneticists from all round the world, and one for genetic counselors. I have received nothing but positive feedback. Not much from the ob-gyn site [Ref 2], but quite a lot from the other two.
Ref 1: Article on AIS in a Canadian newspaper by a group member (see
AIS in Books/Articles).
Ref 2: No surprise. [Male] gynaecologists are the group that worry us the most and which were having most difficulty reaching. They seem a rather self-satisfied bunch on the whole and are probably the most likely to indulge in secrecy or half-truths since they would have to confront their fears of truth-disclosure to a young adult patient herself (rather than [parents), and a patient who by external appearance, would appear to be a 'normal' girl (see Origins of Dont Tell and Saying the Words in ALIAS No.9, Autumn 1997).
This is what he posted for me:
As an AIS patient and one of the leaders of an international AIS support group, I understand how difficult AIS can be. However, those of us in the support group are living proof that AIS patients can be told the truth about our condition and wind up being stronger, more sensitive and more compassionate people because of it. Most of us have spent time talking this over with a counselor, our doctors, and even clergy. I am not saying that this self-acceptance comes without a lot of hard work and after quite a bit of suffering. However, it is our right to know the truth about our lives. Any other option robs us of our dignity and causes its own type of suffering.
Every woman I have spoken to with AIS feels that she was hurt more by the lies, secrets, and half-truths told to us by our doctors and families, than we were by the truth. This secrecy has led to a great feeling of isolation and no place for us to grieve the losses that we suffered. These feelings were far worse for us than the knowledge of testes and Y chromosomes.
In my case, the first doctor who saw me told me I would only keep "female characteristics" with enough estrogen. She didn't explain my condition any further to me, but what she said was enough to frighten me terribly and to make me feel very apart from the rest of women. Other women didn't need estrogen to "keep female characteristics." She then took my mother into another room and told her I was really not her daughter, but her son, that I would virilize, need a sex-change operation, and probably go insane. This was my family's introduction to AIS. The shocking thing is I was 17-years-old; if I hadn't virilized, I certainly wasn't going to.
My orchidectomy was done by very kind, compassionate doctors who unfortunately thought it was in my best interest to lie to me. They said my condition had no name and that I was having a hysterectomy. I felt like the loneliest person in the world. In my mind, no one else in the world even had what I had. I now speak openly about this and use my real name because it is a way of refusing to accept the shame that my doctors caused. I do it primarily because it is good for me to claim the truth of my life. It confirms in my mind that what was done to me was wrong and that my doctors had more problems with gender than I did or do. I also speak out because I hope it will help others girls and young women with AIS and also those adult AIS women who are living alone in their thoughts, uninformed of their condition, or so frightened by it, that they have never told even those closest to them what they have. This shame is not ours and we should never have been asked to bear it.
I have spent most of my adult life trying to find out what was wrong with me, what made my doctors and those around me hysterical, and why I felt so alone. It took me 8 years to convince my ob-gyn team to turn over my records to me. It turns out that my geneticist destroyed my records. It is utterly shocking that I was denied knowledge of my own body and health and appalling that my family wasn't told of the inheritance pattern of AIS and their risks of having affected children. We had basic human rights to know the truth and to make informed decisions about our medical care and our reproductive choices. Our dignity and our integrity were taken from us.
If I were a doctor who had to break this news to a young patient, I know I would be very nervous about how she would take it. I would want to have spoken to a mental health specialist who has experience with gender/intersex issues and is prepared to take on this patient if she should want counseling. I would also want to emphasise that this patient is not alone, that there are other people with the same condition, that there is a support group available and that there are many, many intersex conditions that affect roughly 1 in 2,000 people.
Regarding gender, I urge all doctors to examine their own thoughts on this. Gender is defined by much more than a Y chromosome and some internal testes that the patient has never seen. If she calls herself by a female name, has been raised as female, and is seeing an ob-gyn for her medical problems, she obviously identifies as a woman and there is no reason for anyone to think anything else. If her doctor believes deep in the recesses of his or her mind that the Y chromosome makes her any less of a woman than she was the day before she walked into his or her office, the patient is certain to pick up on that doubt. She is going to face enough questions about gender as she searches for new ways to define what gender means to her, without feeling that her doctors, her parents and others close to her are no longer sure of her gender. The truth is that there is more than one route to becoming a woman there are XY women in the world and there are XX men.
Once we get over the initial shock of our condition, most of us are much more concerned over secrets, isolation, osteoporosis, and vaginal insufficiency. We seem to have no more problems dealing with our infertility than other infertile women. In fact, it might be easier than waiting month-to-month hoping to become pregnant. We have all found great comfort in meeting other women who have such similar experiences and have found the support group to be a very healing experience. The international support group is in contact with hundreds of affected women, and many more physicians in at least 10 countries [gives contact details].
If you are a physician with an AIS patient who is a minor, please explain to the parents that in the long run patients do much better with full disclosure (with age-appropriate details) and psychological counseling. We have young teen members of the support group who seem to be dealing with this knowledge in very capable ways. As one 14-year-old who attended her first meeting last year said as she introduced herself to the group, "Hi, Im ______, I have AIS and I have been waiting all my life to meet you."
Amongst the many congratulatory responses were two from long-time friends of the support group:
Dr. Charmian Quigley (US paediatric endocrinologist) emailed:
I think your letter is excellent, though I remain rather amazed that the Canadians didn't learn anything from the flurry of responses to Natarajan's article a couple of years ago [Ref 3]. As a matter of interest, I recently received a letter from a young woman who had just found out her diagnosis (by browsing the Web) and she reiterates, not surprisingly, all of the things you so eloquently say. Physicians simply must stop acting so paternalistically and more importantly, they must stop believing their own fairy tale about it being in the patient's best interest. I also think ______ [Grade 4/5 PAIS 44 year-old] made a good comment about the fact that many of them simply don't know how to present the truth they just feel so uncomfortable and can't put it into words, for fear of the patient's horrified response. It is a hard thing to do, but I have done it, quite successfully I think, with my two teens [patients] (of course, only time will tell how successful I have been). Anyway, I commend your efforts and wholeheartedly support you.
Ref 3: Reproduced in Sex, Lies and Ideology in ALIAS No. 6, Winter 1996. Also available (together with subsequent discussion material) via AIS in Books/Articles on this web site. See also Truth-telling Debate in ALIAS No. 5, Summer 1996.
Dr. Garry Warne (paediatric endocrinologist) emailed from Australia:
This letter is great! Would you please send Dr Gardner a copy of my [parent/patient CAIS] book when the boxes [of copies] arrive? I have a 13 year-old patient to whom I gave a complete explanation at the age of 12. She has read the book since then, and is very comfortable with everything. Her mother is convinced this is the right approach to take. I would add, however, that I have been less courageous in some other cases.... Believe me, every situation is different and it can be extremely difficult at times. Nevertheless I remain committed to the principle of full disclosure and hope that my book will provide clinicians with the 'script'.
In Aug 2000, the CAIS woman emailed:
Yes, the bulletin board thing is fine [to put it on the web site]. You might want to add a postscript that they have now removed my message. I wasn't notified, but it seems that I broke the rules even though I got a physician to post it for me.
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