IS_Sherrie

SHERRIE

My arrival into the world 38 years ago was a joyous occassion for my family because I was the first girl after two sons. However, ten days after my birth I developed hernias. Surgery performed at that time revealed that I had testes. A buccal smear confirmed the diagnosis. I had AIS.

Like many women with Complete AIS who were raised in less enlightened times, I was not told the truth about the condition. Instead, I was left to figure this out for myself in a medical school library at age 20. I think this is unfortunate because I have experienced more emotional pain about the fact that my family didn't tell me the truth than about either my gonads or my chromosomes. I believe that with appropriate family support and counselling there is no reason any young woman with AIS should be destroyed by this knowledge. Having said this, however, I think it is only reasonable to assume that any young woman who is told the truth with go through a period of grieving. To my mind, this is a natural and healthy part of coming to terms with having any disorder.

It is unfortunate that doctors (and sometimes parents) overlook the difficulties faced by a young woman who does not have a menstrual cycle (which is a coming of age rite on the road to womanhood in this society) or pubic hair. These seem like such minor losses at one level, and yet they are very real sources of anxiety for those of us who have to face them. I remember all of my friends talking about getting their periods and feeling excluded from the discussion, terrified that they would know that I was different. To this day I have trepidation about anyone seeing me naked from the waist down, for fear that they will be shocked at my lack of pubic hair.

I also hope that doctors will investigate a range of options for dealing with the issue of vaginal hypoplasia. This has been a real problem in my life and I am dismayed that the medical community expends so much money and energy developing new infertility treatments but so little effort at developing new techniques for dealing with the critical issue of vaginal length. While this fortunately is not a problem for many of our members, for those of us who have shortened vaginal length, it is of utmost importance.

Being unable to have biological children has, of course, also caused me some sadness. But I have chosen to invest my energies into my career and friendships and know that for me having children is a blessing I will not enjoy in this lifetime. I do, however, have several friends who have AIS who have adopted children, or have had children through surrogacy. Having met their own personal challenges, I believe these women are especially well-equipped to help their children come to grips with the emotional challenges of being adopted.

The road to healing the emotional scars experienced as a result of having AIS has been a long one for me. But the most critical element has been my involvement with the AIS Support Group. Meeting other women who have shared my experiences, and being able for the first time to have a community of friends who know what it is like to deal with the issues I face, has provided me with countless benefits. I feel so much more at ease with the whole concept of AIS.

I have now told several close friends that I have AIS, and am continuously amazed that by sharing my secret my friendships have only been strengthened. Indeed, I have found that sharing my most intimate secret with friends has freed them to share their deepest, darkest secrets with me.

It is wonderful that there is a support group to offer the latest information about AIS as well as emotional support and encouragement. I now have friends around the world who have AIS-- this has been a wonderful "fringe benefit" of being involved with the group. We talk, laugh, cry, and bond together. Meeting bright, interesting women with AIS, and not feeling at all put off by the fact that they have AIS, has allowed me to understand how others could see me in a similar light. What a huge burden this has lifted from my shoulders!

As odd as it may seem, in the final analysis I feel that AIS has been a blessing in my life. I think I am a more comapssionate and intuitive person because of the personal pain I have experienced. AIS has forced me to base my self-identity as a woman on strength of character and warmth of spirit rather than more superificial physical attributes. And as I often say, if I didn't have AIS I would have gone through life like my two older XY brothers- instead I believe G-d intended me to be female; AIS was the route it took to get me there.

If you're reading this and either have AIS or are the parent or relative of someone with AIS, I extend my hand in welcome. I really look forward to meeting you!

Sherri

If you or someone you care about appears to fit the profile of AIS, please contact ISGI if you would like to know more about this genetic condition and the long-term health concerns of Androgen Insensitivity.