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A Personal Letter - AIS-DSD Support Group

Below is a welcome letter from a young adult with Complete AIS named Katie Baratz Dalke. Katie has recently graduated and married Sam (mentioned below)! Read her message, and you can write her directly if you wish….

Katie

Hello, friend!

My name is Katie Baratz Dalke, and I live in Philadelphia with my husband, Sam, and our dog, Ella. I love to knit, sing, and travel, but my day job is working as a Psychiatrist. Let’s see, what else? My favorite color is orange, I’m a Sagittarius, and I love Frozen. Oh! I almost forgot. I have Androgen Insensitivity Syndrome.

I was diagnosed with AIS when I was 6 years old, when I had a hernia operation and my doctors found that I didn’t have a uterus. Because I was too little to understand all the details, my parents told me pieces of the story bit by bit. Each new part of the story was painful and scary to hear. It’s hard to feel different, especially in a way over which you have no control. I spent a long time feeling sad, lonely, and mad at the world.

My parents found the AIS-DSD Support Group when I was 15, and I went to my first meeting at 17.  Since then, I’ve gone to 9 meetings in 13 years.  The group has been a huge part of my healing process.  I’ve met courageous, kind, talented, and strong people with AIS, Swyer’s Syndrome, MRKH, hypospadias, and many other similar differences in sex development who have gone through a lot of the same things I did. They have supported and loved me, and best of all, understand how I feel without me having to explain it.

The strength I’ve gotten from this group helped me to find the words to talk to my family, friends, and partners about how I feel and what my diagnosis means to me. I have come to realize that AIS is a beautiful part of me, but it is not all of me. Some days I still feel sad and overwhelmed, especially when I remember that I cannot become pregnant, but when I feel that way I have a group of loving people who can carry me through the feeling. And Sam and I are very excited to be building our family with the help of a surrogate and egg donor!

Thanks to the group, I’ve found the courage to I talk about my condition openly at colleges, medical schools, and meetings of doctors and nurses. I’ve also shared my story with the media, including Marie Claire magazine and the Oprah Winfrey Show. Now as a doctor, I’m learning how I can best help people with AIS and other DSDs.

It’s scary to be so open with having an intersex condition like AIS, but the reason I do it is the same reason I’m writing you right now–to tell you, my new orchid sibling, that you’re not alone. I want you to know that I know that it’s hard, and that it will get better.

There are hundreds of wonderful people in the group who are waiting to reach out and help you when and if you need it. You can join us at our support group meetings, connect with us on Facebook or our support group forum, or chat with us on the phone or internet one-on-one. We even have groups specifically for teens and young adults. We talk about things like important medical issues, relationships and sex, and taking care of your mind. There are also people for your family to talk to, because they probably have questions too.

So first, take a deep breath.  Then, look around the website – you’ll find lots of great information.  When you’re ready, you can reach out to me, or any one of our amazing members, through the group.

Above all, welcome to our family! I’m so glad you’re here. Just remember: although it may not feel like it now, everything will be better than okay. And you have a whole community waiting here to help you get there.

Love,

Katie

(You can reach Katie at info at aisdsd dot org. We will forward your email to her directly.)

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