By Mavis D'Silva Dec. 10, 2018
When Sara Ali Khan spoke about PCOS on a Koffee with Karan episode, I screamed, “Go girl”. I’d had the disorder – which affects one in 10 Indian women – for years before I sought help for it. But if it is so common, why are we so afraid and ashamed to talk about it?
When I first bled ten years ago, it had only been five minutes into yet another Independence Day. And my maa’s first words right after were, “Stay away from boys”. Wise words, really, but the irony did not escape me. Freedom didn’t feel quite like it should have.
Three years later, I missed my cycle and no boy was involved. “You probably haven’t been eating right,” my aunt reasoned. And so, as the case of the missing period continued with an occasional stop, the reasoning continued too, “You need to workout”, “You don’t sleep at the right hour”, “You don’t listen to us.” I was one missing period away from, “It’s because you’re on your phone 24/7!”
I wasn’t the one complaining. In fact, I was rather elated at escaping the cramps, although my steadily growing weight was a cause for concern. The breakouts were brushed off as a phase every growing teenager had to go through. But when I finally missed my period four months in a row, maa insisted I visit a doctor. Fear-stricken that I might be defected beyond my fat and ugly acne marks, I refused.
Stubbornness pushed me through school and junior college with lots of missed cycles, excruciating pain, and unsupervised over-the-counter medicines. (Today, I’m older and I’d like to believe a little wiser, so don’t do drugs, kids.) My self-esteem had taken a major hit by then as I had thick and visible facial hair. I caught the attention of the boys – just not the way I’d have liked it. Every “Hey, want my razor? You seem to need it more than I do” was countered with a “That’s cause you’re not man enough”. My defence mechanism had macho-ed; my reliance on self-deprecating jokes reached a new pinnacle.
Fear-stricken that I might be defected beyond my fat and ugly acne marks, I refused.
Five years and an accidental eavesdrop by a professor later, I heard the term PCOS. Hearing me rant to my roommates while away on a college trip about how my period left me spotting again, another pretty underwear ruined, she politely intervened. While she explained about cysts on ovaries, my mind provided an unhelpful, “THAT SOUNDS UGLY. I AM DYING. THIS IS IT.”
It was only when the professor mentioned that she had Polycystic Ovarian Syndrome and listed her symptoms which coincided with mine, I was relieved for a moment. The epitaph on my gravestone wouldn’t read, “Too young to die.” But in no time I was blaming myself – my weight and my love for all foods fatty – until a tall and lean classmate admitted to having PCOS. Next I did what any millennial would do but what the doctor wouldn’t recommend: I Wikipedia’d the fuck out of the disorder. I read through infertility, depression, anxiety, and logged off right at cancer.
Feeling heavy and shaken like most people have after watching the Ambanis dance at Isha’s sangeet, I booked my first-ever appointment with a gynaecologist in 19 years. I was five years too late; nervous and embarrassed for delaying this visit. After confirming I had PCOS, the gynaec chided my maa and me for being irresponsible. She put me on a list of prescribed meds and I figured I could have done well without all that anxiety had I just visited her years ago.
Still, I figured I’d be okay: I had taken the first, significant step and walked out of the clinic all confident. I had PCOS and I was going to beat it. I wasn’t the one to be blamed, my hormones were. And hey, I wasn’t going to die.
While she explained about cysts on ovaries, my mind provided an unhelpful, “THAT SOUNDS UGLY. I AM DYING. THIS IS IT.”
But my problems were far from over. Although worried, maa was embarrassed to let others know about my disorder, ultimately asking me not to speak about it. What if people thought I was infertile? Or believed I had some “strange disease”? My PCOS was treated as a curse word – never to be uttered. And like my period, it was to be a closely guarded secret.
So when a guy friend would laugh after seeing how miserable I looked as my cramps hit me, calling me fragile, I would awkwardly tell him to fuck off. And when a class debate ensued on menstrual leave at the workplace, I realised the male professor was clueless about PCOS. As I began to explain, I was immediately shut off. The next day, he sympathetically told me how I should focus on “getting better instead of discussing a personal issue so publicly.” I had no right to make others uncomfortable.
And as dejected and alone it made me feel at times, I am bothered by the the lack of awareness about the disorder. PCOS is a genetic disorder that affects one in 10 Indian women. How many girls like me let it go undetected for years without seeking medical help? How many mamas were asking their girls to not speak about it to anyone? That’s when I decided to speak about it, as frequently and loudly as possible to anyone willing to listen.
What if people thought I was infertile? Or believed I had some “strange disease”?
Feeling responsible and possibly a little heroic, I read extensively – about the fact that PCOS does not equal infertility and not everyone with PCOS has cysts on their ovaries and that two women may have different symptoms. I told off the guy friend who’d called me fragile because I was cramping, and asked him to Google something for a change. And what if I couldn’t stand on the classroom podium and speak about it, I’d talk about it to my classmates anyway, many of whom I knew got severe cramps. I convinced a few friends to see the gynaec. This was my own little revolution.
So when Sara Ali Khan spoke about PCOS on a Koffee with Karan episode, I screamed, “Go girl”. After she spoke about her battle with weight and the disorder sitting comfortably next to her father, no one really applauded, but media publications wrote about it. And for that she’s a hero. Because PCOS needs to be spoken about and it could definitely do with some publicity.
We’ve got to keep the word going around. And stick up for our cysters.