- A story from Mia with CAIS from http://bigpictureeducation.com/real-voices-interview-mia
Q: How do you explain your condition to the people you know?
A: I share information about me when it feels right. I don’t have to talk about it in entirety to relate to people what it means. It depends on who I’m talking to.
I might say to someone: ‘I don’t have a period.’ And I’ll share that part about me, because plenty of people don’t have periods for many different reasons. Some people take hormones and birth control to suppress periods. Other people have different conditions or don’t get a period because they run a lot and are really, really athletic.
I don’t have to go into the specifics of it, necessarily. In the end, if anyone asks me and presses me, I can just say ‘I don’t have periods, and my doctor says it’s fine.’
And I don’t have to share beyond what I’m comfortable. Other times, I may share that I can’t have kids to someone if it comes up and it feels right. I don’t feel like everyone has to know about it. It doesn’t change my first 16 years before we knew, and it doesn’t change who I am and how I grew.
- From Emily with Swyer’s Syndrome, from Inter/Act Youth
http://interactyouth.org/search/gonadal+dysgenesis
Some excerpts from her story:
“I have a lot of experience telling people about my condition. I’ve always thought that it was kind of cool—something that made me special and unique. My parents told me to keep it a secret, but that only made it more clandestine and significant when I’d jump on a lull in the conversation at a sleepover or at summer camp and say, “I’ve got something I want to say, but you guys can’t tell anyone else.” I was a quiet kid (at least around new people) but also desperate to speak and be heard, so holding everyone’s attention the way I did when I told them I had Swyer Syndrome felt like having a superpower.
I was always quick to reassure them that I was actually a girl. ….
As I got older, people’s reactions changed. At age eight, my (friends) thought my condition was interesting and a little weird, but four years later my cabin mates grew somber when I told them I couldn’t have children. This wasn’t how I’d wanted them to act, and their pity made me feel pitiable. For the following few years, I discussed my condition only with doctors and my parents. If I didn’t talk about it, I didn’t have to think about it, and if I didn’t think about it, it almost felt like it wasn’t real.
I’ve started telling people about my condition again—mostly my college roommates, but some other close friends as well. Their reactions are very different from those of my young classmates and camp friends. The most consistent reaction is one of confusion: first about my condition, and then about why I’m telling them. Most people I’ve told see my condition as an embarrassing medical secret that they don’t hold against me but wish that I’d keep to myself.
It’s nice that my relationships haven’t ended or changed because of my coming out, but I wish people understood the significance of being intersex, and why I feel it’s important to tell them. I’m different from a typical woman, in some pretty significant ways, and when I tell people that I’m intersex it’s because I want them to know. But I spent so long as a child downplaying the ways in which I’m different that now I don’t know how to highlight and explain them.”