The Ugly Side of PCOS

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I have always felt larger and hairier than everyone in the room.

A small patch of black hair grows on the lower left side of my neck, and thick, rogue strands sprout from new and surprising locations each day. Upon shaving my legs, stubble seems to grow back instantly. As I dry myself off, I wonder if my friends’ stomachs are as hairy as mine.

On the rare days when I have no obvious pimples, the markings of pimples past redden my jawline and chin. My thighs are strong, but thick and padded with extra flesh. I avoid sleeveless shirts unless it’s cool enough for a cardigan; there are too many candid photos of me where my arms spread infinitely, I think. I’m not overweight, but I have been, and I’ll never stop scolding myself for being too big and too much.

People with Polycystic Ovary Syndrome (PCOS), which occurs in approximately 5 to 10 percent of women of reproductive age, often display physical traits that they despise: excess hair growth on the body, hair loss on the head, acne, weight fluctuation, and round bellies, to name a few. The collective imbalance of three hormones conspire not only to encourage these symptoms, but also to potentially reduce fertility, cause sleep apnea, increase the risk of diabetes, cause bloating, and, often, persuade you to hate the body that seems to betray you. Women with PCOS have higher levels of androgens (acne, hair issues) and lower levels of progesterone (irregular periods), and their bodies aren’t as receptive to insulin, the hormone that facilitates the absorption of glucose. Insulin resistance makes it harder for women to lose weight, particularly around their midsections, and puts them at risk for type 2 diabetes.

When I tell a friend that women with PCOS are more likely to have belly fat that won’t budge, even with diet or exercise, she responds “I have belly fat,” grabbing her abdomen jokingly. “I guess I have PCOS?” I mention her response to illustrate that not only do these symptoms suck, but also that people don’t take them seriously.

But they are serious. A woman’s understanding of her worth can be hard to detach from the standards of a society that demands physical perfection and narrowly defined “femininity.” A friend of mine who is currently in the process of getting a PCOS diagnosis — I’ll call her Diane — hates that she obsesses over the thick, dark hair on her legs, arms, and body. Diane, who also suffers from generalized anxiety disorder, says her hairiness has made every relationship scarier and more exhausting for her, even when people tell her they don’t care and that they love her anyway.

“I obsess over the appearance of my skin, wondering if it looks hairless and ‘normal’ enough,” she says. “I’m a feminist, and I fully support women’s bodily autonomy. We should be able to exist in and take care of our bodies however we choose, without fear of judgement. Unfortunately, that’s not the world we live in. I’ve had to subscribe to the patriarchal ideas of ‘normalcy’ with regards to my body hair. I probably buy four times as many razor refills as other women.”

As is true for many women with PCOS (or body insecurities in general), summer is an especially hard time for her.

“I have to shave daily or wax every few weeks,” she says. “If I have an anxious episode or bout of depression, then my esteem really tanks.”

Even if you can avoid the symptoms, you can’t avoid the chaos of going on and off different forms of birth control, a treatment that can be critical to your health but can also make you want to punch everyone always. It can turn your body into a stranger.

During Madeline Fournier’s senior year at Syracuse University, she gained 15 pounds in four months. She’d always been naturally thin, even since getting diagnosed with PCOS her senior year of high school, so no longer fitting into her clothes has been an adjustment. She now avoids looking at pictures from parties.

“I think it was from the birth control I went on after having a five-week period,” she says. “The weight is difficult to lose, and I really don’t know what to do. I stopped taking it two months ago. Every time I take hormonal birth control, it makes me really depressed. I cry all the time.”

Much of the weight she’s gained has gone straight to her belly, which she tries to hide with high-waisted jeans, a strategy many women with the disorder know well.

Another gift from PCOS? Hormonal acne that never seems to go away. Fournier says it makes her feel gross.

“It didn’t used to be a problem in high school, when everybody had acne,” she says. “But now that I’m 22 and about to graduate college, my friends have nice, clear skin, and I still have acne that flares up. I try really hard to cover it up with makeup. I always think people can see. I was meeting my boyfriend’s parents last weekend, and I said ‘Oh my god, I have so much acne right now.’ He was like, ‘I don’t even notice.’ But I notice.”

Not all women with PCOS experience these characteristic physical traits. The invisible realities of the syndrome — the excess of “male hormones,” the fertility struggles — can trigger even more turmoil surrounding one’s sense of womanhood, femininity, and beauty.

Natasha Nyanin, a 31-year-old writer, was diagnosed with PCOS when she was 16 and living in Ghana. Her mom had “freaked out” when she told her that she was only getting three periods a year, so they went to the doctor. (Irregular periods are often a sign of PCOS in young women.)

Nyanin’s symptoms have fluctuated over the years. In her 20s, she became obsessed with diet and exercise when her gynecologist told her to be cautious about her weight.

“It messes with your mind,” Nyanin says. Yet her self-image issues, namely her understanding of her very femininity, are rooted in something else, something that cannot be seen: fertility.

“A lot of people equate womanhood with an ability to have children,” she says. “I remember my mother saying ‘You’re going to want to have kids one day.’ The identity issues — the issues with how I see myself — are less about the physicality and more about that mental question about what makes me a woman. I rarely get my period. I have all this testosterone coursing through my veins.”

The path toward self-acceptance, then, is impeded by the persistent impulse to wage wars on our hormones and hairs and curves and faces, employing diets, exercise plans, hair removal fixes, and supplements. The mechanisms by which we try to make ourselves feel and look “normal” are alluring; they call to us from the television, from the face wash aisle, even from salad dressing ads in magazines.

Amy Medling, a health coach who goes by “The PCOS Diva,” urges her clients not to attack their PCOS, but rather to approach their symptoms, however irritating, with positivity and acceptance.

“Once you’re given a PCOS diagnosis, it’s easy to feel pessimistic,” she says. “You don’t really know where your life is going — whether you’re going to be able to lose weight or have children, for example. When you’re trying to navigate PCOS, though, I don’t think it’s healthy to approach it as this war to be won.”

Women with PCOS are often perfectionists, Medling says. They fixate on the ways their bodies are different.

“Rather than treating PCOS as the enemy — something to suppress — it’s a situation where we can learn what’s off balance in our lives,” she says, pointing to the many ways small lifestyle changes can ease some of the symptoms. “It’s not about taking a pill, adopting a low-carb diet, and going to the gym. Healing is so much more than that. We need to connect with our bodies and ourselves in a more loving way. We need to embrace who we are at the core before we can move forward.”

While writing this piece, I opened my friend Claire Carusillo’s brilliant beauty newsletter, That Wet Look, to procrastinate. I was struck by a quote she included from Dr. Tara Brach, author of Radical Acceptance: Embracing Your Life with the Heart of a Buddha: “Without judging yourself, simply become aware of how you are relating to your body, emotions, thoughts and behaviors. As the trance of unworthiness becomes conscious, it begins to lose its power over our lives...”

So how do we look at ourselves, silence the negative brain chatter, and see beauty? How do we let our awareness of self-loathing render it powerless? I feel so ugly so often. On a recent morning, I looked in the mirror at a stray dark hair sprouting from my chin and turned to the right, examining the bumps on my jawline, wondering “Have the men I’ve slept with noticed this?”

Acceptance is a process, I guess.

“You have to love yourself while you have the acne, while you have the hair,” Medling says. “You’re at the beginning of a journey that can make you really whole and happy.”

And so I plucked the hair, put on a sheet mask, and opened a book.