What does your condition mean to you?

So far, we haven’t really talked about DSD within a relationship. This is because—especially in the beginning—it’s about getting to know one another and yourself.

Think of each part of yourself as a rubber band. Your smarts, your looks, your character, your personality, your favorite flavor of ice cream, your favorite band, and your DSD. (Among a billion other things about you.)

What can you do with a rubber band?

  • You can fling it at others
  • You can put it on your wrist
  • You can make a chain
  • You can make a bouncy-ball

You get the point—you can do zillions of things with rubber bands, just as you can incorporate your DSD in many different ways.

It is one part of you—just like your favorite flavor of ice cream or your hair color—but it isn’t all of you.

Before you talk about DSD with a boyfriend or girlfriend, think about what it really means to you. There is no right or wrong answer. And, chances are, what it means to you will change with time.

Only you can decide what your DSD means to you.

Here are some examples:

“I developed as a woman in a different way”

“My Swyer’s Syndrome is something special to me—I think it makes me unique.”

“My PAIS is something that helps me see variations everywhere.”

“While I could say my CAIS means that I am limited—I won’t conceive and carry a child—It opens up a world of options for when I am ready to have a child.”

“I still don’t know what my DSD means, but I’m learning more about it. It changes a little bit every day.”

“My CAIS used to feel like a burden—now I see it as a unique gift. Instead of seeing things as “black or white,” I see a more realistic picture of the world.”

“My DSD helped me become more mature and helped me understand my body.”

“My DSD confronted me in a good way. It has helped me become more aware of my feelings and the feelings of others.”

“My DSD means I don’t have a period, and I can’t get pregnant. And that I don’t have mood swings or cramps.”

“My AIS allowed me to meet people—some of my best friends—who I might not have met otherwise.”

“My AIS really doesn’t tell me anything I didn’t already know. I’m a woman. I’m different. And every person is different in their own way.”

“So, when I found out the first time at the doctor’s clinic, I left with my mind full of new words and concepts… But really, nothing changed my body and what it does. I can’t see my chromosomes, my gonads, or my hormones. I’m still me… I’ve just heard some new words that someone else uses to describe my body. I don’t have to use them.”

talking about your body