Dear Devastated,

I’m very sorry and I’ve dealt with first hand what you are posting about. I would take away the hurt if I could. I understand the need to shelter your daughter from the ignorance of the real world and it has nothing to do with being ashamed but rather a protective instinct. I wish that I had some magic words that would change things but I don’t.

I would hope that although parents talk among themselves that they wouldn’t share detailed information with their children about your daughter’s medical condition. Maybe stuff like"Oh, she takes medicine because she doesn’t make what you make." The genital reconstruction is a bit much for some parents let alone kids that don’t even know about the "birds and the bees" yet.

I realize that some people are very open about talking about medical conditions but I also realize that others are not and how uncomfortable this must be for you. One thing about all this, is that you and your daughter will know who your true friends are and aren’t.  The person that asked if your daughter was really a boy? Is that person a friend and maybe needed more clarification about what CAH really is ? I have a standard speech that I give in a monotone voice " Yes,  I’m a female and Yes, I only have female organs but externally they didn’t know what the heck I was. They really though I might be a boy until they did test to prove I was just a girl with CAH.  It is scary that I must also give this speech to medical people and by the way they have been the least accepting of all. Other people, once they get over the shock of something like this happening have been suprising fine with it, those people know you for who you really are and not just a medical condition.

How I was born might put people off at first but then they always bring up my great personality and I seem to be the person that they can talk about real deep feelings to and they know that I won’t judge them. I’ve often wondered if they talked about conditions like CAH in Science and or Health class in Jr. High School that it might make things somehow better.

I’m also from a small mid-western town and as child, I went to neighborhood parties and I’m sure they had to know something. Heck, it was an older neighborhood girl that brought my kindergarden "homework"to the hospital when I had the genital surgeries done. It was being examined by strange interns that did the most damage to me as a child and of course there were people that tried to give me a "stigma" about CAH. Unfortunately, I learned how to be introverted around those kind of people and as a result I don’t trust many people. On the plus side, I’ve learned to really like myself in spite of what others had said and done in the past and I’ve wondered if the could handle having a birth defect ...my guess is no.  

Just always tell your daughter that she is great and always tell her to strive for the best grades she can get because education is the key to the brightest future. Kids tease kids about everything in school, I remember a group of boys that would tease me about my excessive hair ( blood tests were great... Endo no help :-) but also I remember another group of boys that would beat the crap out of the first group because they didn’t like anyone to tease me because I was nice. One girl in gym class asked, "Why did I have so much hair Everywhere?" Most girls would of been crushed if some said that to them but I responded,"Why are you even looking at me?" With that the rest of the girls in the locker room laughed at her instead of me. (The excessive hair lessened after I turned 18) 

It’s like how Mr. Carlton posted, instill in your daughter that she is OK but also realize what type of world we live in.  Your daughter doesn’t have to be a trail blazer for CAH and I sure don’t want to be either. Sure people are curious and it’s always good to educate but sometimes it’s hard enough just growing up and living life.

Sincerely,

A.P. Morgan