Trying so hard to understand CAIS.

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This is perhaps a touchy subject for some, but I really want to try to learn more about the point of view of a certain 46XY Complete Androgyen Insenstivity syndrom person I know. Apparently she did not find out about the problem until she was like 17 years old. She was raised as a normal girl.

I like to think if it was me, I'd simply say to others, I am a steril woman. I can not have children, and let it go at that. Having adopted one child, I found that I could love her just as intensely as if I had birthed her myself.

Yet, she is shattered over the news, and running around telling everyone that she is actually a boy when she actually looks nothing like one. Can someone help me with this? I do not want to be insensitive. Lord knows that T girls have to put up with enough of that.

Just asking.

Gwen

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I hate to state the obvious but..

Frank's picture

Gwen,

I don't know what you can say to her exactly, other than for her/him to be who he feels inside. The obvious that I refer to in the subject is seeing a proper mental health professional. This person's sense of self/identity has been shattered and will have to be rebuilt whatever path that takes. Be there for them, and listen. This person is not a T girl though, at least not in the traditional sense. Running around telling everyone she is a boy probably isn't the healthiest way to deal with it either.

How old is this person now?

Best of luck helping if you can...

Hugs

Alexis

Hugs

Frank

Ask before giving advi ce.

I think you almost hit it on the head, but not quite.

I'd ask her whether she felt like a girl or a boy trapped in a girl's body. That would tell me which way to go and what kind of advice to give.

Xaltatun

Well...

Being raised as a girl and having the body of a girl don't make you a girl anymore than being raised and having the body of a boy makes you a boy. If you don't want to appear as insensitive, don't try to have the answers, you could never look them up anyway, just make sure you are there and supportive to your friend.

Upside Down

This revelation has obviously turned her world upside down. She's 17, for crying out loud! How could you expect someone that age to take such news with equanimity?

The poor girl needs a sympathetic therapist, and soon! The clash between who she's always felt she is and this new medical news is obviously blowing her mind. She's questioning everything now, and sharing her shock with anyone who will listen. She needs reassurance that the news changes nothing, other than any plans she may have had for some day giving birth, and the issue of medical support for hypogonadism, and some surgery she needs soon to prevent cancer. The testes, which can either be undescended in the abdomen, or atrophied and descended in the labia, are going to need to be removed. According to the literature, they present a significant risk for carcinoma in a CAIS patient.

Her choices of gender presentations are extremely limited. CAIS involves a lack of cellular receptors for testosterone. If she wanted to become a man, no amount of testosterone is going to make any significant difference to her appearance. Complete masculinization is pretty much out of the question. For all practical purposes, she's pretty much stuck on the female end of the spectrum appearance-wise, without the use of stagecraft and costume.

Her estrogen levels are likely fairly low, leaving her at risk of osteoporosis, and particularly so once whatever testes are removed, so she will need female HRT. (Assuming testosterone is being produced now, it has no effect on her, but as part of its metabolism, converts to estrogen before being eliminated from the body, providing her about the same amount of estrogen that most men have.)

She needs counseling, and some reassurance that supplemental female hormones will make her largely indistinguishable from any other woman, if she wants, and just as healthy. There is another option, but especially if her sexual preference is other women. Androgyny is becoming a real choice in the lesbian community. She'd still need some estrogen to support health, but less than if she wanted to present as a more feminine person, and she can have "top surgery" as the female androgynes call the mastectomies.

I'm going to say it one last time... This poor girl has received a terrible shock, and needs counseling, support, reassurance, information, and some time to calm down and get her bearings.

Not that it would do her any good but...

...the doctor that told her she's a boy just because she has a Y-chromosome ought to be sued for malpractice. There are so many genes on other chromosomes involved in sexual development that even calling X and Y the "sex chromosomes" is horribly misleading. Heck, the androgen receptor gene involved in CAIS is on the X-chromosome. In other words the receptor for so-called "male" hormones lives on the so-called "female" chromosome. I mean, OK, maybe they don't teach this stuff in med school, but they ought to. Ignorance is no excuse for causing this kind of unnecessary psychic pain to a patient.

I'm referring to her with female pronouns because from what I've read about the condition, a CAIS person with a male gender identity is pretty much unheard-of. This makes sense if forming a male gender identity depends in any way on the action of androgens on the brain, but it could be wrong of course and if I were speaking with her I'd ask which pronoun she preferred.

Be there for her. There are resources for CAIS on the web; help her find them and connect with others who've had to go through this same nightmare. Start with the Androgen Insensitivity Syndrome Support Group (http://www.aissg.org). There are some powerful and moving first-hand accounts there.

Hope this helps.

Trying to be more passionate about compassion

I've only just begun to work with groups who actually tell me what gender pronoun they prefer, and it was unsettling at first, because the idea that they should have to tell others that seems a weight they should not have to bear.

In comparison, for me it has been pretty simple. I was born in a boy's body, but essentially always knew I was a girl, never really had to figure it out. Of course, like many of us, I spent a life time performing in a Black Broadway Drama; trying my best to impersonate the gender that I was told to be. So, in a sense, gender was never something I had to figure out. For me the injustice was waiting so long to finally fix it.

I am at war with myself on how to feel about her, because of my own experience. She looks like a girl, acts like one, will never have to get SRS. Sure, she needs to get her gonies excised out of her, but then she can use an Estrogen patch, just like I do. In some ways, I almost feel like she's not so bad off, but then I can not truely put myself in her head; can't posibly know the anguish and disappointment.

Maybe it is best to simply hold her and allow her to cry. At some point she will need to begin to move past it all; have a life in spite of the raw deal. I think everyone gets a bit of the brown stuff off the fan now and then. My only real obligation is to be sympathetic, supportive and loving.

Gwen

It would seem

laika's picture

...your young friend really needs to talk to other AIS women. How they handled suddenly finding out they had Y chromosomes. We with histories of GID can offer support and acceptance, but it's not totally
the same thing. It does wonders to hear your own story being told by someone who's gotten
through it and seems happy*. I hope there's something like that available for her...
~~~hugs, Laika

.
(*I remember how devastated I was when I first found out about my own genetic abnormalities.
I'd be lost without my space aliens support group. Okay not really, but it would explain a lot...
)