On Being Born Intersex

Being born intersex isn’t something I hide, but it’s also not something I talk about often. I’m not ashamed, but it’s not a huge part of my life.  If you have questions or want to talk about it, please let me know. I speak openly about it in person, and have shared it online in the past, but it’s been awhile. I was asked to contribute to an article in Cosmopolitan (hasn’t been published yet) and thought it might be cool to share my answers to the reporter’s questions. I didn’t have a specific time I was going to share, I planned on waiting until the article had been published. The reporter is keeping the responses anonymous (being intersex is a sensitive subject for some) and I’m sure my responses will be heavily edited, so I thought it made sense to share my answers once the article was released.

Until today, when I saw some major fuckery from an idiot (who I’m not even going to name because I don’t want to drive traffic to his ignorant, bigoted, homophobic, ‘christian’ website) and decided that now would be a great time to talk about my experience. You see, there was a document called the Nashville Statement published a couple of months ago whose signatories (most of those creepy mega church people) believe that I was born intersex because I was cursed by god for Eve’s original sin and the subsequent fall of man (nope!), and that  in order to, ‘liv(e) a fruitful life in joyful obedience to Christ,’ that my genetic sex needs to match my gender identity. No one in the world knew of my genetic difference until I was 17. I’ve never questioned my gender identity, before OR after my diagnosis. And these people think they can just decide that I should switch over because of an xy instead of an xx?  Eyeroll. There are many intersex people who do change gender identities, who are gender fluid, who are gender neutral, and there is nothing wrong with that! My fuming has a lot to do with the oppressive Christian patriarchal machine I dealt with in my school years who is still trying to tell me what to do.

To this type of Christian I’d like to say;

-I am exactly who I’m supposed to be

-MIND ‘YA BUSINESS

-STAY IN YOUR FUCKING LANE

-‘SIT DOWN. BE HUMBLE.’ -kendrick lamar

Here are two great articles to read about what’s going on in the intersex advocacy community right now;

https://www.thenation.com/article/why-intersex-patients-need-the-truth-and-doctors-need-to-listen/

http://www.washingtonpost.com/sf/style/2017/10/05/the-intersex-rights-movement-is-ready-for-its-moment/?utm_term=.392b6f5cf408

Here are the questions and answers I responded to this week;

  1. So you identify as intersex. What does that mean?

 For me, in general, being intersex means being born primary or secondary sex characteristics that do not fit neatly into society’s binary definitions of male or female.  You’re born with traits and characteristics of both sexes. Somewhere in between. For me specifically, being intersex means that I was born with Swyer Syndrome. That means that I was born externally female, with a uterus and fallopian tubes, but with unformed ovaries. Genetically, however, I have XY (male) chromosomes. I’m not in the medical field, but this is how I understand my specific syndrome; When everyone is in the womb, they develop the same gonadal tissue until week nine. Although gender has already been determined depending on whether the sperm that fertilized the egg is xy, or xx, the tissue that has been growing for nine weeks is identical until week 9 when hormones are introduced. The tissue then develops into either testicles, or ovaries. My disorder made me insensitive to those hormones, so the tissue didn’t develop into testicles or ovaries. It ‘should’ have turned into testicles because I’m genetically xy, but it just stayed as it was.  

  1. How old are you?

35 (How did this happen?!)

  1. How old were you when you realized you were intersex? How did you find out?

 I was 17 when I found out. I hadn’t started my period, and every time I went to the doctor my mom or I asked about it. Because my mom didn’t start her period until she was 17, and because I was very active in school sports, they always told us that I was just a late bloomer, and not to worry about it. Toward the end of my Junior year of high school and into the summer I grew much taller really quickly, and gained a lot of weight. I hadn’t changed my eating habits and was still swimming and playing water polo, so we knew something was wrong. After dozens of blood tests and doctor appointments, I was misdiagnosed with Complete Androgen Insensitivity Syndrome. It’s very similar to Swyer Syndrome, but people with CAIS don’t have a uterus. I always wondered why I did, and (thank you google) discovered Swyer Syndrome around 2008? I then called my doctors and let them know. 😀

  1. How did you feel when you found out?

The doctor who told my mom and me the news thought that I already knew of my diagnosis from another doctor I’d seen. So after months of not knowing what was wrong, but knowing it was something, the doctor walked into the room and said, ‘So tell me what you know about your testicular feminization….’ (Side note: Like the word hermaphrodite, Testicular Feminization is an antiquated term that is no longer used) And I had no idea what he was talking about. As a 17 year old girl I definitely didn’t want what was wrong with me to have anything to do with testicles. YIKES. It was a traumatic experience and day, preceded by a lot of other traumatic poking, prodding, and behavior. Luckily, I was referred the incredible duo, Drs. Cheryl & Nicholas Saenz who took over my treatment and handled me with love, sensitivity, and kindness.

  1. What was it like going through puberty as an intersex person?

I can tell you what NOT going through puberty was like as an intersex person. It was frustrating to not go through the same things your friends are going through. Starting your period (mine didn’t start until I was 18, when it was induced with hormone replacement therapy), developing breasts, stuff like that.  I got breast implants when I was 18 and that made a huge difference in my life then and now! I love having boobs. 😀

  1. How has being intersex affected your sex life?

It hasn’t. Externally, I developed typically.

  1. Have you told partners and or friends you were intersex? Why or why

not? If so, what was their reaction like?

I’ve never gotten to the point in a romantic relationship where I felt the need or desire to tell someone. I tell friends and have become more and more likely to share as the years have gone on. It’s not something I shout from the rooftops, but it’s also not something I avoid.

  1. Has it affected your fertility?

 Yes. It is possible for some people with Swyer Syndrome to get pregnant with an egg donor. I actually have a friend with Swyer Syndrome who is expecting, and I am THRILLED for her. For me personally, I’ve gotten mixed answers from fertility specialists. I had one who said absolutely not, there’s no way you’ll get pregnant, and one who said that he can’t tell until I try an in-vitro hormone cycle.  Even before being diagnosed, I loved the idea of fostering to adopt instead of being having a family through a pregnancy, so I am not sure that I’d attempt it? Not having the choice to get pregnant like most people do has been really difficult. Especially when a lot of my friends started having babies.  It’s heartbreaking and has contributed to a lot of sad times in my life. Childbirth and pregnancy is SO cool to me (I even became a birth doula for a short time!), and a part of me really wants to experience it. We’ll see!

  1. How else does being intersex impact your life now?

Medically, I take synthetic hormones every day and am at high risk for osteoperosis. I deal with most of the issues menopausal women face.

Physically, I am really tall because my body didn’t receive the hormonal signals to stop growing. I also struggle with my weight, which is a combination of my genetic difference, and using food as comfort. I avoid dating partly because I fear telling a boyfriend about my diagnosis, and also because I feel uncomfortable with my size. I’m working on that, though. YAY THERAPY!

Being intersex doesn’t have a huge impact on my day to day life, but overall it has made me a better, more tolerant person. I am more of an advocate for the LGBT community than I would have been had I not been born this way. Although I have never questioned my gender identity, many people who identify as intersex do because a gender decision was made for them as a newborn or child in an attempt to assimilate them society’s binary boy/girl designations. Instead of accepting that not everyone is the same, and that everyone is beautiful just as they are, and should have the opportunity to explore themselves and make their own decisions, they’re often mutilated to make parents and doctors feel more comfortable. Being a part of a community where that is happening has taught me the importance of accepting others on their terms, not society’s. The next part is a little tricky for me to write and word properly because I am incredibly privileged to be someone who externally fits into societal gender definitions. I realize that my experience is not the same as someone who grew up with pain and judgement because of who they’re attracted to. I also don’t want people to misconstrue what I’m saying in a way that suggests that being gay is something medical that should be treated.…… but here it goes. I SO strongly believe in fighting for marriage equality and LOVE using my diagnosis as an argument for it. The scenario I present is as follows; I was born intersex, meaning that I’m physically female, but genetically male. What does the church and bible say about that? Nothing. SO, if I identified as a man or a woman, it would be accepted in your church as long as I was dating the opposite gender, right? Because I’m neither? Something in between that could go either way? (they usually agree) So if you can’t make a decision about who I should be and date and marry and love, then how can you make that decision and judgement for anyone else? I hope that makes sense.

  What are the biggest misconceptions you’ve encountered about

intersex people?

That it’s something that needs to be ‘fixed.’

That you need to choose between two gender identities.

There’s also a lot of sensationalism around being intersex. There are rumors of actresses and models being (GASP!) intersex, like it’s some sexually deviant thing you choose to be.

  What, if anything, do you wish had been dealt with differently

when you discovered you were intersex?

I wish that doctors had been more sensitive. My condition is rare, so I understand medical people being fascinated with it, but there are times when I’ve felt like a sideshow attraction.

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FL:R