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A Woman Shares What It Was Like Growing Up Intersex | The Oprah Winfrey Show | Oprah Winfrey Network

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KATIE: Everyone has secrets. Everyone has something that they are too afraid to tell anyone else. When I was six years old, I went to the hospital with a hernia. And when the doctors cut me open, they found testes where my ovaries should be. And I was diagnosed with androgen insensitivity syndrome, which means that instead of having two X chromosomes like girls usually do, I had an X chromosome and a Y chromosome, but I developed totally as female even though I have a Y chromosome. My parents sat me down with the book "Gray's Anatomy" and said, this is a uterus. This is where babies come from. And you don't have that, so you can't have babies. And then when I was 14, I started taking some estrogen medicine so that I could develop like other girls did. It was really horrible in middle school and high school when all my friends were menstruating and starting to menstruate and I wasn't. I learned everything about my AIS when I was about 16 or 17 years old. You know, I don't think I ever really thought that because I had a Y chromosome I was supposed to be a boy. When I was 18, I had my testes removed. The hardest things were knowing that all of these doctors who'd come into my exam room when I was a kid had known a lot more about my body than I did. So that was really difficult, to feel like there was the secret about my body that I wasn't in on and that my private parts were public. So Katie and her mother Arlene are here today. I'm happy to have you join us here today. And as I said, it's very difficult booking the show for all of our producers, because most people don't want to talk about it. They want to keep the secrets. They don't want the scrutiny from family or friends. Why did you agree to do it? Well, the reason I wanted to do this was because, I think what makes this so difficult to talk about is that people just aren't aware of it. It's just not something that people discuss in public over cocktails or something. And I think a lot of the shame that a lot of people are brought up with comes from the fact that we just can't discuss it. So for me, coming here and doing this show is about shedding some light, as you said, educating people, and hopefully making it easier for future women like myself to be able to talk about this some day, to not feel like they have to be ashamed, and in fact, really, just totally lift that shroud of secrecy that covers so many lives. So genetically, you are male? In a sense I am, because I have an X chromosome and a Y chromosome. And what happened was, the Y chromosome told my body to develop testes, but when my testes were functioning like they're supposed to, producing lots and lots of male hormones like testosterone-- OPRAH WINFREY: Testosterone, yeah. --which, androgens the umbrella term, my body just didn't respond to them, which is because I'm insensitive to androgens, which is the name-- where the name androgen insensitivity syndrome comes from. OPRAH WINFREY: OK. So in a sense I'm not male at all, because I'm producing all these hormones and-- OPRAH WINFREY: But you have testes? KATIE: I did have testes. - You did. Right. OPRAH WINFREY: You had them removed. Right, but they-- they were doing all this work. And nothing was really happening, because my body just wouldn't respond to it. OK, so how is your body not like a regular female's? Or is it other than that you had testes? Right, well I look totally female. OPRAH WINFREY: Yeah, you do. Thank you. And even if you were to see me in the doctor's office or a locker room, I would still look totally female. The only thing that's different is that inside, instead of ovaries, I had these testes. And I never developed a uterus, or fallopian tubes, or a cervix. OPRAH WINFREY: OK, so when you say inside, can we use the "va-jay-jay" word? You can use the "va-jay-jay" word if you like. OK, so yeah, so inside, when you say inside, you mean inside your va-jay-jay, right? I mean inside my body. OPRAH WINFREY: OK. In most women, what happens is the vagina leads-- is a canal to the uterus so that babies and menstrual blood can come out. OPRAH WINFREY: So do you or do you not have a vagina? That's what I'm trying to-- - I do have a va-jay-jay, yes. OPRAH WINFREY: OK, good. [LAUGHTER] OK, so when you first started to have this hernia problem, is that when you started to realize? I mean, I was pretty young, so I didn't really know what-- OPRAH WINFREY: What was going-- - --was going on. OPRAH WINFREY: Yeah. I just knew I had to go to the hospital. OPRAH WINFREY: Mhm. And it was when I came back from the hospital that my parents, my mom, sitting right here, were burdened with this secret now that I had this diagnosis. OK, so what were you told, Arlene? I was told that she had androgen insensitivity syndrome. All the physical characteristics were explained to me. I was lucky to have great medical care. And everybody was very positive. And to me, the main thing was that I wanted to raise a happy, healthy child. And that was my goal. OPRAH WINFREY: And so the decision immediately was to have a conversation with her about what this meant and to try to find terms that a child her age would understand? Yes. We disclosed things to her that were age appropriate. For example, to a six-year-old, you can say-- you can talk about having babies grow in your tummy, that some people have a family with babies that grow in your tummy, but some people have a family adopting babies. And we stressed those sorts of things. And as time went on, we told her more and more about it. How did you first feel? I mean, you're handling it so well now. It was very shocking, but we did have great medical care. And everyone was very supportive. And we learned as much as we could. And eventually, I found a support group, which was tremendously helpful, when Katie was 14. So how do you tell people that you're genetically male? Or do you? I mean, now you won't have to tell anybody. Everybody will-- yeah. Yeah, I mean, now everyone and their dog knows. But I shared a little bit in high school with people, what I did know, that I wouldn't get my period. But it was difficult, because a lot of people just didn't understand it. I didn't really understand it, so I got teased about it a little bit. And that was really difficult. How can you even get teased about it since nobody even understands what it is? Well, I mean, the logical question is, when you tell someone you don't have a uterus, they say, well, where did it go? OPRAH WINFREY: Yeah. And I didn't know the answer to that. So you know, they would say that I was mutated, or a mutant, or something like that. Did you ever feel that way? Did you ever feel mutated, mutant, odd, odd one out, not like everyone else? Yeah, of course-- I mean, so much of adolescence for a girl is about moving through these rites of passage, of getting your period, and buying your first bra, and having your parents be awkward about it, and going on your first date, and all this other stuff. And I wasn't really doing that stuff at the same time that my friends were, so I felt really isolated in that sense. And I had never met anyone else like me. You know, my mom was very supportive. And my doctor was supportive. But it's-- it's hard. It's very lonely. OPRAH WINFREY: Very lonely. - Mhm. OPRAH WINFREY: And when did you start to then not feel so isolated or lonely about it? Well, the best thing that ever happened to me with respect to this was, when I was 18, my parents took me to my first androgen insensitivity syndrome support group meeting. And I met some really amazing, talented, beautiful smart women, who were just like, you know what? This is something that I have. Yes, I used to have testes, but it doesn't mean anything to me in terms of how I live my life. It's just part of me. It's not all of me. How great is that? [APPLAUSE] That's great. OK, how-- OK, big question, so how does it affect your dating life? You know, it-- it's always really scary to think about telling someone that I may be dating. And it's something that I build up a lot in my mind and that I get very, very nervous about. But the fact of the matter is most-- I've had three boyfriends. My current boyfriend is absolutely amazing. None of them have ever cared at all. One of them, when I told him, he was kind of like, OK, so when do you want to go to dinner? And-- OPRAH WINFREY: Really? KATIE: Yeah, I mean, it's one of these things that you-- [CROWD AWWING] Yeah. OPRAH WINFREY: They're going, oh, he's cute. Did you read the book "Middlesex?" I did, three or four times. OK, so when you read the book "Middlesex," have you ever felt like Callie did when you feel like you don't want to get close to people, or you are dating and then just before you know an intimate-- you know, it moves to an intimate, intimacy phase, then you sort of pull out? Were you ever like that? Of course. I mean, it's-- it's definitely a big barrier to emotional intimacy. I mean, I know every single person in this room and watching the show has had something that they've been afraid to tell someone else that they care about. And with this, it's terrifying, because you're afraid that it's going to make someone not want to be with you anymore, that it'll be a deal breaker. And that's really scary, but I've been very fortunate in that that hasn't been the case for me at all. OPRAH WINFREY: Beautifully said.

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