A Choice I Can Make By Leela Sinha

I have Polycystic Ovarian Syndrome (PCOS). It was a sneak attack, arriving while I was out of the country, away from home and my usual set of doctors, just as I was emerging from adolescence and beginning to settle into the body I thought I’d have through early adulthood. I was hijacked–I gained 30 lbs in a month, and the depression I’d lived with got worse; my energy plummeted, my brain felt rewired.

The worst thing was, I didn’t know what was happening to me. This was the late 90’s, and PCOS was the new kid on the medical block, not worthy of research unless someone was trying to get pregnant. I didn’t want to be pregnant, couldn’t have cared less about trying to conceive–I just wanted my body to work right. But with unfamiliar medical systems, a lack of my usual autonomy, and a whole new diet, it was not going to resolve quickly.

As it turned out, the Indian doctors were right–I had PCOS. But it took until I returned to the States, got insurance, and re-ran all the bloodwork before I could try for treatment. There wasn’t much available. Then I found a website (http://soulcysters.org) and suddenly I wasn’t alone. Suddenly there were other people with the same weird mishmash of symptoms and bloodwork. And suddenly there were people talking about experimental uses of existing drugs to mediate the impact of the condition that no one really understood.

Meanwhile, my body continued to change. My waist had ballooned. I started growing hair on my face and chest–like a man would. Nothing was quite right. Fortunately I was able to advocate for myself. I talked to my doctor, who was young and female and open-minded, and she agreed to let me try the new treatment. The experimental medicine was a godsend–for the first time in my life, my body worked more or less like it was “supposed to”. I got regular periods. My weight dropped back down. I had more energy and better sex drive. The lifelong depression faded.

There’s something that happens in this culture when your female body doesn’t look like a woman’s body. For many people with this diagnosis, it begins a lifelong struggle to look “normal”–endless cycles of weight loss regimens, laser treatments for unwanted hair, hair growth medications for male pattern baldness, et cetera and so on. There’s a piece of us that just wants to fit in, to stop paying attention to our bodies so we can start living our lives. PCOS makes us look more like men, and we are absolutely Not Supposed To look like men. The stigma is so fierce and so deep that even when our partners and lovers and spouses tell us they find us sexy and beautiful, we can’t get the voice out of our heads–we’re supposed to look different. Our bodies are broken, damaged, wrong.

I’ve been lucky. I’m queer. My friends are fat-positive, gender-bending, open-minded, creative people. I knew, even as the PCOS took hold, that the people around me would love and accept and welcome me in whatever body I had. I knew, even as I struggled with weight control and being healthy, that people would respect me. I never had to worry that if my stubble showed my friends would disown me. I never felt the need to sprint out of bed in the morning to put on my makeup before my boyfriend or girlfriend saw me without it. But that’s not because I wasn’t self-conscious.

I just knew my people. I knew I was among people who valued me.

The truth is, I still wanted a body like a soccer player or a rock climber. I still wanted the energy and drive to take up running. I still wanted to be beautiful, the way the media told me people saw beautiful. My mother taught me to be hyper-critical of advertising from the time I was a small child. I grew up with liberal context and liberal values. I’ve never worn makeup, because I don’t like wearing it. But part of me still wanted that beauty–truth be told I still want it, on some level. I just don’t want it badly enough to compromise my hard-won mental health. I don’t want it badly enough to be miserable. I don’t want it badly enough to compromise my values. So I need to find the middle ground.

I’m looking. I’m still looking. I hate the diet culture, but I know that changing my food habits will help me be healthier. I hate gyms, but I need to do something with my body, because my body loves it. I want to runandjumpandplay! My sweetheart recently pointed out to me that in fact I am an athlete. I don’t want to lift weights, but I love to rock climb, kayak, hike, contra dance. I do like being in my body. I’ve always been the bookworm. It was a revelation.

Learning to occupy my body not as an invading force but as a co-conspirator for my joy is a new journey. I have more pleasure in sex, now, and I am re-learning to engage with food as an experience. I’ve been baking, and my arms and hands are stronger than ever. I like it. I enjoy the power. I don’t feel like I have to hold back. And I’m carving out space in this world for a gender identity that holds both/and. I can be powerful, and I can be beautiful, and I can be both of those things in any body I have. I don’t have to be thin, or wiry, or big or small, feminine or masculine. I can be sort of feminine and sort of masculine and strong and opinionated and gentle. I can write refined verse and slam poetry with the same fingers; I can sing with my full voice. I can enjoy all of these things–the pleasure is central to the space I occupy in this world–it’s a laughing, sensual, tactile space. And not only is that okay, it’s a defining characteristic. It doesn’t matter what I weigh, or if people call me “sir” or “ma’am”.

Who I am and how I am doesn’t hinge on how I look, nor does how I look have to follow who I am. Nothing defines me except me and the company I keep. And that’s a choice I can make.

Leela Sinha is a sexuality and life coach and educator who helps her clients explore, expand, and feel good about their sexualities, their bodies, and the way they move through the world. From basic body mindfulness to shaking the blahs out of an old relationship to queer to kinky–she can help. When she’s not working she can be found hiking, kayaking, or curled up in front of the woodstove in Maine with three cats, two dogs, a book or computer, and her sweetheart. Find out more and sign up for her newsletter at Leela Life Coaching; follow her on Twitter@LeelaSinha and on Facebook as Leela Life Coaching. A percentage of her fees for all PCOS clients goes to Soul Cysters for all the fantastic work that they do.

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