We use this part of the web site to display people’s stories. If you have AIS or a related condition, or you are the parents of an affected child, we would like to hear from you. The UK group looks after the web site so please send your story to the UK group (see How to Contact Us).
Many people with AIS and related conditions have found it very helpful to tell what happened to them. For many of us, it is very therapeutic to “say” those things that we have never told anyone, and quite cathartic to “get it off your chest” by tossing it out into the wider world, but in a safe way. If you wish, you can supply a pseudonym, although most people opt for us to use their real first name on the site. We understand the importance of safeguarding people’s identity/privacy, so your full name, email address etc. will be completely confidential. Please remember not to mention other people’s names without first obtaining their permission.
It is also a great help to other affected people/families to discover, by reading people’s stories, that in fact a community of XY women exists, when they always thought they were “the only one”.
Tell us how you learned about your, or your child’s condition, what you felt and thought, and where you are with it now. What aspects do you think need further attention? Please give your email a title/subject line that give us some hint that it’s a genuine message, because we sometimes don’t open emails that arrive with a blank subject line or ones that look like spam.
A CAIS woman wrote in 1997:
I remember repeatedly thinking as a teenager “How am I going to get myself out of this?” What I meant was not how would I make it all go away (I knew that was an impossibility). Rather I thought “How am I going to summon up the courage to get the help I need, how am I going to find the strength to talk about it?” (even though I didn’t yet know the truth and know what ‘it’ was), “and how the hell am I ever going to build a normal relationship?” I couldn’t even imagine telling anyone I was unable to have children and didn’t have pubic hair – the two things I actually knew and understood at that age.
The image of being painted into a corner was vivid in my mind since the age of 12 or 13. It haunted me until age 36. I never saw any way out of the corner except by taking my life, until I came across the letter [from another AIS woman, in a medical journal, giving the support group contact details]. The letter wasn’t just a release from a corner, it was a release from the prison that was my mind, a place where everything was locked shut inside and could find no freedom of expression. And when I read the description, in ALIAS No. 1, of “….the process of hearing oneself actually saying out loud those words that you thought would forever remain as circling thoughts in your head”, I convulsed with sobbing (the word convulsing is not an exaggeration; I had never cried from so deep a place, or as intensely as when I read that quote). Nothing I ever read so brilliantly depicted how I felt about my life experience and the ordeal of keeping it all locked inside my mind.
We received the following email in March 2004:
A kind hello from Giorgia, I mail you from Belgium. I don’t have an AIS diagnosis nor dealt with the medical issues mentioned on your site. I just want to mail to express how much impressed I am from reading the personal stories. I’m also very shocked at the medical discourses, terms and attitudes towards women with AIS.
Having an educational background and work experience in both anthropology and psychotherapy, I feel that the degree of primitiveness expressed by our culture to accomodate “variations” is very high: we live in a sex, gender and sexual primitive society. On the psychological side, I feel hurt to read the effects of the knowledge women have on theirselves. The way that this knowledge has been transmitted and expressed, strikes me as very painfull. Since I too don’t bleed and don’t have a womb but appear female, I can sympatise very strongly with the stories of these women.
Warm regards, Giorgia.