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The Syndrome That Made Me Question My Femininity
The hormonal imbalances and side effects pushed me into a spiral of shame
“Let me see, mija. Come here,” requested my favorite aunt in a soft voice. I begrudgingly got up from the tile floor where I was lying next to my cousin while we ate mango raspados six inches from a box fan on full blast. It was our preferred way to assuage the unforgiving heat of the San Fernando Valley’s hottest summer days. “Bring that chair and sit right here,” she instructed. She and my mother began examining my neck. They went back and forth for a while about whether or not what they were looking at was dirt. “She just needs to scrub harder when she showers,” my aunt finally concluded. I couldn’t see my face, but I suspected it had turned the shade of pink it always did every time I felt really embarrassed. I could tell because my cheeks suddenly felt hot, and my mom gave me her “it’s okay” forehead kiss when she saw my expression.
That was the second time I found out something was wrong with my body. It was 2002, and I was 10 years old. By that time, my mind was already constantly preoccupied with different strategies I could use to lose weight. Though she was hesitant, my mom had started letting me occasionally replace meals with Slim Fast shakes she used as part of her own weight loss regimen. That was also the year Shallow Hal was released on DVD and the year my best friend and I became obsessed with watching former Playboy model Anna Nicole Smith’s personal and professional life crumble (because of all the weight she gained) on her eponymous E! reality TV show.
In my bathroom mirror later that night, I confirmed that there were indeed dark patches of skin that began at the nape of my neck and traveled around to the front, just enough to be visible even when my hair was down. It was the most stubborn dirt I had ever encountered. No matter how hard I rubbed my fingers against it, none of it would transfer. For a while, I religiously scrubbed with a loofah every time I showered. It was hard to tell whether or not it helped because my skin would get irritated and turn bright red by the time I got out and checked. Once, I scrubbed so hard that I chafed my neck and started bleeding in tiny, dotted patches. I eventually gave up on scrubbing and on all the “brightening” and exfoliating Mary Kay products my mom bought for me, too. None of them worked.
At 14, my mom made a doctor’s appointment for me because, in the year since I got my first period, I had only gotten it two or three more times. The doctor referred us to a gynecologist who informed us that the darkness around my neck was not dirt at all, but something called acanthosis nigricans, a skin condition typically associated with insulin resistance and hormonal disorders. She also noticed my “excessive” facial hair and said that, given those three symptoms, it was very likely that I had Polycystic Ovarian Syndrome (PCOS), a hormonal imbalance characterized by heightened levels of androgens.
In the United States, PCOS affects between 10% to 20% of women between the ages of 15 and 44. In many ways, it’s still a mystery in the medical world. There’s no single test to definitively diagnose it, its exact cause is unknown, and it doesn’t have a cure. It’s also considered a clinically heterogeneous condition, meaning it manifests in different ways from person to person. But some of the most common symptoms include irregular menstrual cycles, hirsutism (excessive facial and body hair), acne, skin discoloration, fertility issues, and difficulty losing weight. Not everyone with PCOS experiences these symptoms, but some people, like me, experience close to all of them. The disorder also increases the risk for other serious health issues like insulin resistance, type 2 diabetes, high cholesterol, heart disease, and high blood pressure.
A 2002 study published in the academic journal Social Science & Medicine calls PCOS “the thief of womanhood.” Through extensive interviews, the study investigates the high levels of stress and anxiety recorded in women with PCOS and links them to the social burden of its “masculinizing” symptoms. “It was evident that PCOS had major significance in the everyday lives of most of the participants in this study,” reads the conclusion. “Virtually everyone talked about feeling ‘abnormal’, ‘unwomanly,’ ‘weird,’ ‘different’ in some way.” “My husband knows most of the things about the syndrome,” one of the women who participated in the study revealed. “The one thing I managed to keep away from him is the facial hair. It seems to be the one thing for me that really, I don’t want him to know about.”
In the United States, PCOS affects between 10% to 20% of women between the ages of 15 and 44. In many ways, it’s still a mystery in the medical world. There’s no single test to definitively diagnose it, its exact cause is unknown, and it doesn’t have a cure.
That’s the thing about society’s suffocatingly narrow version of acceptable femininity. It’s nonsensical and self-contradictory. “Natural beauty” is hailed as femininity’s supreme brand, but most women who keep their bodies natural are deemed undesirable. Women’s natural bodies have hairy legs, and vaginas, and armpits. They have breasts that sag, and skin discoloration, and large bellies that almost always pair with big butts and thick thighs. But women are supposed to spend whatever amount of time and resources it takes to enhance, hide, or alter parts of their bodies until their beauty appears convincingly natural. Only then is their femininity confirmed. And what’s perhaps most heartbreaking in a world that defines femininity in near-impossible terms, is that adolescent bodies become battle grounds for this centuries-old war on women. Girls learn that their bodies are wrong before they’re even given the chance to learn or respect them.
I was 16 when the first person I thought I loved broke up with me. We only dated publicly for a few months, but our relationship started about a year before that. No one knew about us during that time because, for one, he was my older brother’s best friend. And he was also in a long-distance relationship with someone else. Even so, the first year was the best part. He was funny, caring, and went out of his way to make me feel beautiful. He’d do sweet things like take the bus to my job so I wouldn’t have to commute home alone and dedicate corny songs to me over the phone. I fell hard and fast, the way teenagers so often do.
He eventually broke up with his girlfriend, and we started “officially” dating shortly after that. But our relationship started unraveling almost from the beginning. It started with me hearing about mean things his friends would say — like how his ex-girlfriend was hotter than me and how he shouldn’t have broken up with her. I only ever saw her a couple of times from a distance, but I knew exactly what she looked like. From her Myspace pictures, which I could only see because I made my best friend add her, I knew she was a very petite girl. My boyfriend wasn’t tall, but he towered over her in pictures. She also had perfectly perky breasts and a flat stomach. One of her most liked pictures was one of her in a two-piece bikini at the beach. She had all of the things I thought I didn’t and, most importantly, his friend’s approval.
One day, he and I were sitting on the steps in front of school figuring out where we were going to eat. A friend of his walked by, said “What’s up” to him, then looked at me, pointed at my face, and yelled, “Daaamn, she has a thicker mustache than you,” then walked off laughing. I knew it was a joke, but I also knew that it was true. After swallowing the huge lump in my throat, I told my boyfriend I had to pee. I rushed to the bathroom in the main building and hadn’t even fully secured the stall lock before bursting into tears. I knew the comment had bothered him even more than it bothered me. I saw it on his face. And that part felt the worst. By that time, I had convinced myself that he was embarrassed of me. Everything had changed, and he had grown distant. When he finally broke things off and got back with his ex, the message I registered was one I’d struggle with through many more relationships: that I wasn’t pretty or feminine enough to be loved openly. I now think of the situation as a perfect example of the ways that children get cornered into compliance when they begin to stray from society’s predetermined ideas of what’s attractive and what’s ugly, what’s desirable and what isn’t.
Today, it’s easy to point to the rise of social media, filters, and photoshop as the root of bodily dissatisfaction and the prevalence of unrealistic beauty standards. The commercialization of social media, after all, has created a newly astronomical financial incentive to keep women anxious, self-loathing, and dissatisfied at all times and no matter what. But women’s bodies have been under constant surveillance and under attack since time immemorial. It’s said, for example, that women in the Middle Ages bled themselves regularly to achieve the waxy, pale complexion exalted in Anglo-Saxon poetry. Advertisements from the late 19th and early 20th centuries urge women to swallow “sanitized tapeworms” to lose weight.
Let’s dare to ask ourselves what form femininity could take in a world that isn’t dominated by men and gender binaries.
But history has taught us that no matter how much of ourselves we pour into the system, no matter how much we submit and acquiesce to its demands, our bodies are still not safe. The liberation of women and the liberation of our bodies are one and the same project. Our work cannot, however, begin with condemning women’s use of makeup or filters or even decisions to undergo plastic surgery. That would be reductive. Beauty standards may be social constructs, but their material implications are very real.
Instead, let’s begin by imagining a world where women are seen primarily as speaking, thinking, feeling people, with hopes and illusions and visions, not as hollow things that exist solely to satisfy male desire. Let’s dare to ask ourselves what form femininity could take in a world that isn’t dominated by men and gender binaries. Only then can we begin to move towards a vision of ourselves and our world that keeps our bodies and our children safe.