The Weight of Secrets
Last May I fainted. I was filming a short documentary about maternal mortality in Northern Uganda and it happened during an interview with the main subject. Standing inside the cool walls of his mud hut, I started seeing a few black dots that grew in number, and my hearing began to fade. The subject was talking about his wife’s preventable death during childbirth at a government clinic, and his eyes were filling with tears. I gripped my monopod—it seemed like the worst possible moment to stop the interview. But then my vision went completely dark, my ears were ringing and I felt my legs starting to give in.
“Excuse me,” I interrupted him. “I’m about to faint.” I gingerly rested my camera on the ground, and then collapsed.
The villagers assumed that I was a classic mzungu—a westerner unable to handle the sweltering climate—and I played along, laughing at myself and laying down in the shade. The truth was I had fainted a number of times in the past year during far less trying circumstances and while I wasn’t entirely sure why I was fainting, deep down I knew that I was really sick. And I had no idea how to tell anyone.
I knew I had endometriosis, but a quick Google search of the disorder showed an illustration of a nondescript white lady standing in a field of wildflowers, clutching her head and abdomen, the words “common” and “treatable” jumping out at me. It certainly didn’t look at bad as I felt. Maybe I was just doing a poor job at toughing out the chronic pain.
At that point, I had gone to five different OB-GYNs, seeking treatment for my common disorder. They each prescribed me different forms of hormonal birth control, which in turn gave me severe side effects and treated the endometriosis pain with varying efficacy. I finally gave up on birth control altogether, and decided to leave my endometriosis untreated because the only other options offered to me were a hysterectomy or medically-induced menopause.
I was suffering a lot—getting my period twice a month and along with it debilitating, immobilizing pain. Losing a lot of hair. Constant nausea. And there was the fainting. I could barely function and I was in complete denial. I had tried to get medical care, and I was made to feel like my condition was more or less hopeless. One OB-GYN even looked at me, wincing with sympathy, and said, “There isn’t a lot of hope for you.” So, I tried to ignore the problem and I even went on the road, traveling around the world for nine months to do documentary work.
In most aspects of my life, I kept the extent of my sickness entirely secret. I knew I shouldn’t feel ashamed about my periods from hell, but I still couldn’t figure out a nonchalant way to bring up my reproductive health with most people in my life. I also didn’t want endometriosis factoring into people’s image of me—I loathed the idea of being perceived as weak, sick, or in need of saving. Plus, it depressed me to talk about a problem to which I knew of no solution. So I carried the secret, which seemed to become heavier every month I kept it.
The secret didn’t only grow inside me, it also grew between myself and other people. I’m an extrovert, but I started to find it really hard to be around other people. There was so much I didn’t know how to communicate with them, it seemed easier to retreat inward.
When I fainted during that interview in Uganda, it was a wake up call; my body was in a bad enough state that it would get in the way of me doing what I really love. I wanted to ask for help, though I wasn’t sure from who. I was disoriented, but I knew I needed to communicate how awfully I felt and I needed to do it soon. So, I turned to the tools I had and made a short film about what it was like inside my mind and body. I hardly slept for a week, working around the clock to make it, and getting both my period and the flu as soon as it was done. In between fever dreams and contractions, I sent the video around to my friends and family.
Within a week, I got a phone call from a stranger. “You’ve been seeing all the wrong doctors,” she announced bluntly. She was a friend of a friend and had endometriosis too. She explained the disorder to me in clearer terms than anyone ever had, and it suddenly didn’t sound so benign. “It can impact your digestive health, disrupt your hormone regulation, and sensitize your central nervous system.” She connected me with her doctors and urged me not to wait any longer.
Today I regularly see a pelvic floor rehabilitation specialist, an endocrinologist, a gastroenterologist, a pain psychologist, and an acupuncturist. I’m a part of a private Facebook group of nearly 35,000 women with endometriosis and their loved ones. I have a laparoscopic excision surgery scheduled for the summer. For the first time since being diagnosed with endometriosis, I feel a semblance of understanding and control. All because I decided to tell my secret.
Women are uniquely expected to keep secrets about their bodies—to spare other people the embarrassing details. What we don’t acknowledge enough is that carrying secrets is a tremendous burden. It’s exhausting and isolating, and it certainly doesn’t serve us. Now when I find myself keeping a secret, I make myself examine its origins and question its motives. Most importantly, I spit that shit out.
Featured image by Natalie AllgyerA Monthly Experience Unlike Any Other. Shop Cora.
Author Bio Sindha Agha is a filmmaker and photographer based in Los Angeles and a 2018 Sundance Ignite fellow.