Did you catch tonight’s episode of Faking It?! Lauren tells Leila and Lisbeth her secret! Each week we’ll be talking to different Inter/Act members, a group of young 14-25 year old intersex people, asking them to relate their intersex stories with what Lauren is going through.

What is Androgen Insensitivity Syndrome (AIS)?

Milly: Complete AIS is the Intersex condition Lauren was born with.  It means inside she was born with typical male (XY) chromosomes and internal testes — instead of ovaries and a uterus.  But on the outside she appears typically female.

Unfortunately, many AIS girls have had surgery to remove their internal testes — even though they are perfectly healthy. Doctors and parents often feel the need to remove typical “male” gonads from their little girls. Thankfully, this is starting to change because in most cases their testes are keeping them healthy.

We’re really excited that Lauren has AIS so she can help raise awareness about these unnecessary surgeries and ultimately, help stop them from happening. They end up having to take hormone pills to replace the natural hormones their testes were producing.  AIS girls do not get periods and are can’t have biological children.

AIS is on a spectrum. At one end, someone can be completely insensitive to androgens, and then moving on the spectrum to partially insensitive. Lauren has Complete AIS (CAIS) which means that internally she has XY chromosomes and testes but no typically female reproductive organs, and externally she developed like a typical female. Her testes were probably removed when she was younger. Because she doesn’t respond to testosterone, she doesn’t have oily skin, little to no body hair, and minimal body odor. Typically, people with CAIS identify as female. But not always.

People with Partial AIS (PAIS) fall somewhere along the rest of the AIS spectrum, and are partially insensitive to testostorone. There is alot more variation in how people look with PAIS, and some identify as female or male, neither or both. People with PAIS have different responses to testosterone, and nobody develops in exactly the same way. We are all unique and wonderful!

Lauren takes estrogen. Why? What’s that like? Do all intersex people have to take hormones?

Daphne: Unfortunately, many AIS girls like Lauren have had surgery to remove their internal testes and They end up having to take hormone pills to replace the natural hormones that their testes were producing to keep them healthy.  

Not all intersex people have to take hormones, it really depends on their situation, but a lot of them do. Taking hormones can feel different to everyone. To some it might not be a big deal, but to others it might be really difficult. There is a lot of emotional impact that can come from these little pills, at times it could feel like they dictate your life, but sometimes you forget they even exist. It’s all a process.

Xandra: A non-intersex female with developed ovaries usually produces enough estrogen to spur sexual development and maintain balanced bone health. However, because Lauren has Complete AIS (CAIS) and doesn’t have ovaries, she takes estrogen pills to maintain her physical and emotional health. Sex hormones, like estrogen, have complex interactions with our brains and bodies, so people born intersex with hormonal deficits are prescribed estrogen, testosterone, or a combination of both to meet the needs of their individual body and gender identity.

Lauren can’t have kids. Can YOU have kids? How has that affected YOUR life?

Xandra: I have Swyer Syndrome, a different intersex condition from Lauren’s, but similarly I can’t have biological children. I’m the eldest of six kids and growing up I imagined a future with children possessing my mother’s hazel eyes or my dad’s thick brown hair. After my diagnosis, it pained me to accept my infertility. I closeted my feelings of shame and feared my  future partner’s intolerance and prejudice. However, I’ve grown to accept that I can be a mother without the physical act of bearing children. There are many options for families unable to have kids including adoption, surrogacy, or living childless!

Daphne: I didn’t grow up in a very liberal household. Since I was little it was instilled in me that the main purpose of my life would be to start a family and raise a couple of children. This belief was shattered when I found out I couldn’t have children, being a AIS female. It was hard for my mother to learn that I couldn’t fit this mold she had made for me, but I didn’t really know what to think of it. I was 15 when I found out, and what 15 year old seriously thinks about raising a family? My biggest concern till then was passing my Physics test, and then all of a sudden, it wasn’t. I had to think about these very adult things, I had to confront some things that most of my friends still don’t even think about now. It was pretty hard, especially with adults telling me things like “you’re so young, you don’t have to worry about it now,” because I did have to think about it. I had to face it. It was tough because it made me grow up very quickly and feel like I was different from my peers in a very crucial way. But, at the same time, not being able to have children made me realize that I am worth so much more than my ability to produce children, the It sucks not havingre is more to me out there and there are greater things I can pursue if I choose to. the choice to make cute little people that look like me, but with time it gets easier. You learn that there is more to being a mother than the physical act of carrying and delivering a child, I know now that I can still be a mother if and when I want to.

Milly: I grew up in a community having kids is like a woman’s number one mission. That made it SOO hard to accept the fact that I couldn’t do this ONE thing that most woman can do accidentally. It made me think I was so unlovable, so unworthy of ever being in a good relationship. At 25 I now know that’s not true, but it sucked so bad that I felt like this at 12 or 16, or 21 years old. I always planned on adopting, because the question was always “HOW are you going to have kids?” not “Do you actually WANT kids?” But now I’ve realized I don’t want kids at all! I’m happy being a cool aunt, and having little furry dog children.

How did it go when you chose to tell people?

Alice: I have told lots of people and each person has handled it very well. I’ve always been the type to share a lot about myself. I did feel like I had to keep it a secret in general,  but I’ve always been very trusting with friends. It hasn’t backfired on me yet except for the first friend I told in middle school. She threatened  to tell a boy I liked (because she also liked him), but she didn’t and we were still friends after that. It was a while before I told more people.

Lenny: It’s been surprisingly wonderful. Telling friends is what made me finally reach out to this fabulous intersex community. They gave me support, confidence, and, more importantly, a listening ear. They’ve shown me that being born differently is something I can be and should be proud of.

 I’ve had friends say a few ignorant things like “Does that mean you’re gay?” but I try not to hold it against them. It’s confusing!

Xandra: At first, it was extremely hard to tell friends that I was intersex. In high school, I sometimes used alcohol to ease anxiety in social situations. It wasn’t cool. After a night of drinking I might spill my feelings about my absent period, ovaries, or XY chromosomes.  I felt abnormal and different, isolated from television shows featuring expecting mothers and irritated by tampon commercials. Over the years, as I soberly disclosed to close friends and created a support network with Inter/Act. I received nothing but supportive affirmations and a few understandable queries! When I told my current boyfriend I was intersex he didn’t freak out or break up with me. Instead he offered support, strengthening our relationship, and I felt empowered facing my fear of rejection.

Daphne: I waited for a long time before telling one of my closest friends about having AIS.  But when I decided I was ready I was prepared  with little worksheets and stats all laid out to present to her. I was so nervous but when I told her it was amazing. She was so supportive, comforting, and there were hugs all around. It made me realize that we need to have more faith in people. If they are the least bit intelligent and love you then they will try to understand and be more supportive than you could have ever expected.

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