In the spring of 2005, I was wrapping up college and everything seemed thrilling and exciting and possible—or would have, if I didn’t have a throbbing pain across my pelvis that seemed to worsen by the day.
“It’s stress,” I heard over and over again from my parents and friends and strangers when I would describe the sharp, burning sensation that felt like it was slowly consuming the lower half of my body. It got to the point where it was hard to stand up, hard to walk. I was having trouble eating—and had terrible diarrhea whenever I did. And my periods? Every month, I found myself curled up in a ball on the floor, counting down the minutes till the cycle ended.
By June my parents were worried enough that they flew me home from New York to Atlanta. Within 48 hours of stepping off the plane, I had picked up a diagnosis for endometriosis.
It was the first time I had ever heard of the disease, in which the endometrium—the tissue that normally lines the uterus—goes rogue and attaches itself to other organs. Just like with a “normal” period, these deposits grow and shed monthly. But since they aren’t located where they ought to be, they build over time—often causing unbelievable pain and scarring.
At the time, I was horrified to learn that endometriosis had the potential to render me infertile. And it felt lonely to be starting my 20s looking ahead to a lifetime of managing a chronic illness: While friends were wondering where they could have the most fun legally drinking, I was wondering if I would ever be able to leave the house without a heating pad taped to the inside of my pants. I was 21 years old and felt the rest of my life had been predetermined. But just as daunting was the notion that I couldn’t talk about what I was going through with friends or acquaintances, and definitely not with bosses. Anything that involved “ladyparts” felt way too private.
All of this is why I have watched in awe—and gratitude—as one after another female celebrity has come forward over the past year to speak out about her struggle with the disease.
The celebrity endometriosis wave began last November, when Lena Dunham devoted an entire issue of Lenny, the newsletter she helms, to the condition. She addressed the disease again in a powerful essay this year, explaining why she needed to take time off from her work on HBO’s Girls. In her memoir, released in March, Padma Lakshmi talked about the impact of endometriosis on her life and how the pain it caused her stopped her from wanting to have sex—and contributed to the demise of her marriage with Salman Rushdie. And just last week, Star Wars ingenue Daisy Ridley took to Instagram to talk about her struggles with the condition.
The same way speaking openly about our periods—or abortion or pregnancy or other health issues unique to people with vaginas—is working to break down stigma (and unfair policies), speaking openly about endometriosis ultimately helps our culture better understand women’s bodies and support our choices.
Eleven years ago, when I was first diagnosed, I quickly absorbed the message that no one wants to hear a woman talk about pelvic pain—because eeeeeek pelvis is basically code for vagina! This was not something to be discussed in polite society the way something more genteel like a sinus infection might be.
And given the explosion of confessional journalism over the past decade, it’s easy to forget that, not that long ago, talking about one’s intimate reproductive health matters publicly was somewhat rare. Back in 2007, when I became a writer for the nascent Jezebel, it still felt a little dangerous to raise the question of whether you needed to shave your legs before seeing the gynecologist—let alone talk about the kinds of medical questions you and your gynecologist might actually discuss. Today, though, thanks both to the internet and activist groups working to normalize women’s health issues—groups like #ShoutYourAbortion—we are finally breaking down the stigmas.
It’s funny that my chronic disease suddenly feels chic. I confess that I enjoy getting texts from friends whenever a celebrity discusses their symptoms, telling me, “You had endometriosis before it was cool!” But mostly, I’m just hopeful—hopeful that women who also find themselves doubled over in pain might think to seek out medical care sooner than I did, when the condition was still hiding in the shadows. Hopeful about the demanding of attention to a condition that only ravages the bodies of those anatomically female.
My endometriosis will be a pain that will forever be a part of my life, a pain I feel constantly because, even after surgery, endometrial deposits grow back—and my choices are either deal with my pain or regularly go under general anesthesia to be sliced into. It’s a war of attrition happening in my own body. And I’m lucky, because my case is mild: I have not had to have my uterus removed, my fallopian tubes have not, to the best of my knowledge, been irrevocably scarred. The pain is there, gnawing and burning, but at least I know I’m not alone.
Because when Lena Dunham takes to Instagram to explain why she can’t do press for Girls, she makes it a whole lot easier for other women to have these conversations in their own lives. And not just conversations about chronic illness, but conversations about fertility treatment or paid medical and family leave or insurance coverage for birth control. Celebrities talking about women’s health make us all talk about women’s health.
And hopefully, if there are 21 year-olds out there just being diagnosed like I was, hearing celebrities speak about their illness can make a strong case that living a full—and thrilling, even—life is still possible.
Jen Gerson Uffalussy is a regular contributor to Fusion. She also writes about reproductive and sexual health/policy for Glamour, and television for The Guardian. She lives in Atlanta.