Friday Spotlight || Leah on being Intersex

My name is Leah and I’m a 43 year old working wife mom currently living in Brooklyn, NY. I grew up in Small Town, GA and moved to the Northeast back in 2002. I saw Miggy’s Insta-story a few weeks ago where she mentioned she was looking for people’s stories that related to gender, and thought I would share my story with her. I have an Intersex condition called Complete Androgen Insensitivity Syndrome. It is just one of many such conditions that fall under what people may have previously referred to as a DSD (Disorder of Sexual Development).

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Miggy: Welcome Leah and thank you for being here today to share your story with us. Let’s jump in! You are intersex, can you please define what intersex is as a condition? Also, as most conditions there is variance, can you speak specifically to what being intersex looks like for you and when you first realized you were intersex and how you and your family reacted to the news? How do you feel about being intersex now?

Leah: Hi! And thanks for taking the time to share my story with your readers. First off, Intersex is an umbrella term that is generally used to define people whose bodies do not fit the “typical” female or male binary. Intersex conditions are naturally occuring variations in aprox 1.7% of the population which is about the same % as natural born redheads worldwide. The chance that you have met someone who has an Intersex condition and didn’t know it is therefore quite high, except obviously we’re not as easy to spot as redheads! There are a number of different conditions that fall under the Intersex umbrella, but my particular condition is called Androgen Insensitivity Syndrome (AIS). What that means is that I have XY (typically male) chromosomes, instead of ovaries I had internal testes, but no uterus, fallopian tubes, etc. My body doesn’t respond to androgen hormones (the most important of those being testosterone), and because my body couldn’t process testosterone, it instead aromatized it to estrogen which caused me to develop outwardly as female. I have the complete form of AIS which means that those androgens had no masculinizing effect on my sexual development. However there is also a partial form of this condition where there is some effect of the hormone on a person’s body, and their sex assignment at birth may be difficult to determine.

First of all, it may shock you to know that I learned about my condition in stages over a period of many years. (This is fairly common among the intersex people that I’ve met.) I realized something was different about me when I never began to menstruate as a teenager. My mother took me to our family doctor at age 16, who examined me, didn’t know what to say, and then sent me to a gynecologist in town. The gynecologist examined me, took some bloodwork and told me she’d be in touch in a few days. I went off to summer camp imagining that soon I could take a pill to kickstart my period. However, when I got home the doctor instead told me that my body hadn’t formed properly in utero and that I had “streak ovaries” that needed removing b/c they were “pre-cancerous.” (In reality, it turns out I had un-descended functioning gonads.) She informed me that I’d never be able to have children, and that I didn’t have to ever tell anyone what was “wrong” with me. We could keep this to ourselves. My family didn’t have medical insurance at the time, and couldn’t afford surgery. That summer I went into a deep depression and don’t recall much other than sleeping and being taken to a lot of church services. I’d grown up in a small town in the South where everyone was deeply religious. My family was evangelical and believed firmly in faith healing. That summer and throughout the next year, my mom drove me to a number of different revivals and prominent faith healers within 200 miles to have people pray for me that God would work a miracle and “restore my body.” That year’s experience informed two pivotal things for me. It made me feel that my body wasn’t okay, and gave me a huge sense of shame about who I was. I felt abnormal and that I needed to be “fixed.” It also shook my belief in God and all the people in my church that I’d known for so long. No matter how much I prayed, or how big my faith was, I wasn’t “healed.” I was subtly made to feel “less than” because I couldn’t serve God’s purpose by having children

At age 18, my family finally had insurance. I was still living in a huge amount of fear that any day my “abnormal ovaries” would develop into cancer, and I desperately wanted to feel normal. So after my high school graduation, we scheduled the surgery for of the removal of my gonads. I didn’t tell anyone, not even my closest friends or family what was going on or that I was having surgery. Prior to going under, I had to have an ultrasound performed of my abdomen to locate my gonads, and I will never forget the technician’s insensitive remarks about how she’d never seen anything like me before as she was looking at the monitor. I felt humiliated and like a freak of nature. After the surgery, I began regularly taking a high dose of Premarin (estrogen) as hormone replacement therapy (HRT.) Ironically years later, there was a study published that Premarin was linked to causing cancer. As an adult now, I realize that my surgery was performed without my informed consent. I didn’t fully grasp that my body would go into early menopause at 18 and what that would mean. I didn’t understand that there had been no studies of intersex people to base the claims for my surgery or that synthetic hormones do not 100% replace what your body produces naturally.

My sense of identity throughout this whole experience was shaken, and my self-worth which had already been battered through different childhood experiences, was now non-existent. I spent my 20’s and early 30’s in self-destructive behavior looking for acceptance and proof that I was “good enough” and loveable. I would wish that shame or silence on no one.

Miggy: Was gender identity something you ever struggled with growing up and did finding out you were intersex feel like you finally found a missing piece of the puzzle? OR, was your life pretty typical and finding out you were born intersex come as a complete shock?

Leah: Gender identity was never something that I struggled with. My body is phenotypically female, and I have always identified as female.My understanding of my condition is that it’s most common for persons with the complete form of AIS to identify as female because our bodies cannot process testosterone. A doctor much later in my life once described the effect on my body as being “uber-female” since testosterone, which occurs normally in both females & males, causes secondary effects in females such as armpit & pubic hair, pubescent acne, increased sweating or change in body odor. I’ve never experienced any of those things that normally come with puberty.

My life felt pretty typical up to the point to where I never started my period. However, once I discovered the truth around 30 years old about what my condition really was, I was SHOCKED. I was living in Philadelphia at the time, and was at my gynecologist’s office. She’d left my chart laying on the table and left the room, so I picked it up and began reading and saw the words “Patient is T-Fem who identifies female.” She came back, and I asked her what that meant. She was somewhat taken aback, and realized that I didn’t fully understand my condition. She said medically my condition was often referred to as “Testicular Feminization” which meant that I had XY chromosomes. She suggested I google it to understand it more fully. I did a little bit of searching, but quickly shut down emotionally and refused to think about it further. More than ever, I felt different and othered. I felt this huge sense that I had an enormous secret that I could never share with anyone because I wouldn’t be accepted, find love, get married, etc. I became depressed again. It wasn’t until several years later that I heard a radio interview on the Leonard Lopate show with another Intersex person with my condition, that I no longer began to feel alone. Soon after I began the process of reaching out to the support group. It was life-changing going to my first ever conference and meeting others just like me. Our stories were so familiar. The lack of information. Surgeries that weren’t fully informed. Feelings of shame and difference. Frustration with the medical community.

Miggy: I know I speak for a lot of special needs moms when I say I worry about my daughter being bullied for her differences. I’m assuming that since your condition was not visible that bullying was not an issue for you (please correct me if I’m wrong) but in general is being intersex something that some kids are bullied for? What can we as parents and educators do to reduce bullying of intersex people?

Leah: I was never bullied for my difference because there were no physical manifestations of it outwardly. I feel lucky in that regard that my otherness wasn’t visible to the general public. However, that isn’t the case for every Intersex person. Through my involvement with the AIS-DSD support group, I met a number of amazing people whose experiences had been quite different. Many had experienced traumatic early childhood surgeries to make their genitals appear “normal” that left them with severe scarring and/or lack of sensation, or the wrong gender assignment. Many of those people experienced bullying, or worse, physical abuse from their families. I learned so much empathy at that first conference listening as others shared their stories. It made me realize that the story of high school biology I’d been taught was a lie. The world isn’t just black & white (male and female). The natural biological world is actually much more complex, and instead of black and white it’s actually a spectrum of glorious color. In life, we’re presented with only two check boxes…to mark either Male or Female. But sometimes, people don’t fit into either.

Miggy: One of the reasons I’ve wanted to discuss issues surrounding gender identity here on TLM is that I come from a very conservative faith background, one that places a lot of importance on gender in fact with many leaders who speak of gender being a fixed and eternal identity. For most of us a fixed gender identity may be true, but one thing I do here is shed light on those that live in the margins of the human experience. Is there anything you would want to say to someone who believes that gender is fixed from birth and anything we can do to better recognize these differences?

Leah: I also grew up in a conservative faith background, and yet my body flies in the face of everything I was taught at church and school about only male & female. For many years, it left me questioning God, my place in the church, and my long-held beliefs. I was taught being Trans was a sin and a choice, and while I don’t identify as Trans, I knew that my body didn’t fall within what many Christians claim as the only two acceptable choices, Adam or Eve. Yet here I am. I wish that instead of being told to be quiet and hide who I was, and have surgery to make my body more normal, that I’d been reminded of David’s words in Psalm 139:14-16, “I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.” Hearing that there were others like me, that God created my body a little differently and that was okay would have been life-changing for me.

I’ve struggled with the fight many people of faith take up over the issues of gender and sexuality. I feel it’s not a fight for them to make. I feel strongly that as a Christian, my faith compels me to look for the good in others, not the differences because as is stated in Matthew 7:1-3. “Do not judge, or you too will be well judged. For in the same way that you judge others, you will be judged, and with the measure you use, it will be measured to you. Why do you look at the speck of sawdust in your brother’s eye and pay no attention to the plank in your own eye?” Personally, I know that gender is much more nuanced than most give it credit for. So instead of hiding any longer, I decided to raise my hand to be counted. So that people see and hear our stories. I may not fully understand a Trans person’s experience, but I cannot invalidate it. And instead, I choose to love them and support them, as I believe God would have me do.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to being intersex?

Leah: I’ve had a few moments that I thought were funny. The first was several years ago when I was chatting with a friend in my kitchen about a story in the news regarding the Intersex athlete Dutee Chand.

During the conversation, he casually said that he’d never met an Intersex person. I laughed and offered him my hand saying, “Hi, my name is Leah. Now you’ve officially met someone who is Intersex.” He was floored, and wanted to learn more. That moment (and his reaction) was pivotal for me beginning to become more open about who I am. I now feel the need to help educate people that we exist, and we’re not imaginary. The second funny moment was not too long ago. I took a 23 and Me DNA test, and before sending my results, the company sent me an email asking if there might be some mistake. They wanted me to validate my response as to my gender identity since I’d denoted in the questionnaire that I was female, yet my DNA told them differently. I literally laughed out loud seeing it on paper that my DNA told them I was male. I realized then that if someone had only to identify me years later by my DNA sample, they would automatically assume I was a man!

Miggy: As an adult how does being intersex affect your day-to-day life, or does it? How has it changed over the years?

Leah: Being Intersex doesn’t affect my day-to-day life much, other than it’s been difficult to find doctors that know much about my care. In many instances, I’ve been the only Intersex patient that the doctor has ever met. And I’m having to try and educate them about my hormone replacement therapy, side effects, etc. It often feels like they’re guessing. Which has led me to rely on my AIS community for recommendations of doctors who have more experience treating patients with our condition. I’ve often had issues with fatigue, various levels of menopausal symptoms, and over the years have struggled from weight gain due to my lack of natural hormones. When I learned that it wasn’t necessary for me to have had my gonads removed, and that persons with them still intact lived healthy, happy, normal lives, I felt infuriated and betrayed. You wouldn’t tell an XX female to get her ovaries removed at 16, so why would you tell an XY female to have her gonads removed? The testosterone my gonads produced were natural for my body and kept it functioning normally.

Miggy: Lastly, is there anything else you want people to know about you, your life or about being intersex in general? If you could give any advice to mothers of children who are intersex, what would it be?

Leah: I like to describe my own story as if it were a journey. My body thought it was going on a drive to Atlanta, but the map ended up taking it to Nashville instead. It’s not like Nashville is a bad place, it’s just different than Atlanta. Life has turned out great so far for me. I’m happy to report that I’m married and lucky enough to be a mom to a 6 year old daughter, born via egg donor and gestational surrogate! She’s been the greatest gift and blessing in our lives. To your readers, I would say that Intersex people come from all walks of life… all races, nationalities, and social statuses. I know intersex people who are lawyers, psychologists, executives, models, activists, athletes, hairstylists, singers, educators, film producers, and motivational speakers. The thing that they all have in common is a grace and love and huge heart from the common experience of being different. I would tell the mother of an Intersex child not to worry, and to tell their kid that their body is normal and just the way God created it to be. I would tell them to LOVE their child’s body because EVERY BODY is DIFFERENT in it’s own unique way, and to let their child decide if they one day want surgery. I would tell them to not be scared of their child’s future because their child will grow up to be just fine. Some will marry, some will not. Some will want children and find ways to have them, and some will not care. They will find love just as anyone else will.

Lastly, Kristina Turner, the mom of an intersex kid recently said, ““Raising [an Intersex kid] is just like raising any other kid. It’s raising the rest of the world that’s the problem.”

To find support for AIS or another Intersex condition, you can contact AIS-DSD. To learn more about Intersex advocacy work, you can go to Interactadvocates.org

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Leah, I can’t thank you enough for this educational, vulnerable and honest peek into your life. I learned SO MUCH. Gender roles and identity really hit a nerve for us culturally and there can be a lot of fear and anxiety when gender and the subsequent roles/identity don’t fall into tidy little boxes. Reading about your body and it’s development was, of course, not upsetting at all. But reading about how you were treated by doctors, your faith healing tour, the unecessary surgery and the subsequent emotional and mental damage that all of this caused you was quite upsetting. I know that being intersex isn’t a disability, but I see similarities, one of which is the idea that a person with a body that doesn’t fit in the typical mold needs to be changed–sometimes through therapy, sometimes through surgery–until it fits into this typical mold, or comes as close as possible. Of course this isn’t necessarily wrong–some conditions are painful, or we simply want to maximize a person’s abilities just like we want to do with typical bodies. BUT we need to be aware of the fact that sometimes it’s not the body that needs to change to fit the mold, but it is the mold that needs to change to allow for more bodies, for more perspectives, for more nuance. I have a much different view point of the world, of disability and differences, than I had 6 years ago when I first started this series and that is all thanks to people like you who have shared their stories. There is power in telling our stories and sharing our truth. Thank you Leah, you’ve done a world of good here today.

Amazing. If you or someone you know would like to be featured in the special needs spotlight please email me at thislittlemiggy at gmail dot com. Have a fantastic weekend.

XO,
Miggy