Frustrated by not seeing her own experiences reflected in endometriosis stories, Wileman, now 34 and a photographer and filmmaker, started photographing herself with the help of caregivers.
As her health improved, she began photographing others living with the disease that she met through online endometriosis communities. She set out to create “true representation” of what the disease looks like, who it affects and how it impacts their everyday lives.
“It was a very powerful experience, really,” said Wileman, reflecting on the first time she photographed another person with endometriosis. “It was the first time I’d spent time with a person who was as sick as I’d been.”
The result is “This Is Endometriosis,” a photo and documentary film project, and a social media campaign, #THISISENDOMETRIOSIS. One of the goals of the project was to dispel a long-running misconception that the illness affects only childless White women. Endometriosis affects about 10 percent of those born with a uterus, regardless of race or gender identity.
A lengthy delay between the onset of symptoms and endometriosis diagnosis is common, said Iris Kerin Orbuch, a California-based endometriosis specialist.
“You can imagine 10 years of pain, 10 years of gut issues, 10 years of anxiety and depression because they’re walking into a doctor and they look normal,” said Kerin Orbuch, explaining that the physical and psychological effects of endometriosis can compound over time. She compared the buildup of pain to the difference between stubbing one’s toe and stubbing a toe every day for 10 years. “What happens is that your whole body feels like it’s on fire.”
Despite the long list of symptoms, endometriosis is frequently thought of as “just painful periods,” Kerin Orbuch said. But the pain caused by endometriosis can exist outside of the menstrual cycle and be present every day of a person’s life.
Severity of the disease is also commonly misunderstood. “Someone could have a belly full of endo and not be in any pain,” Kerin Orbuch said. “Someone could have a spot of endo and be in extreme pain and use a walker.”
When Wileman was diagnosed, she was first treated using ablation, a laparoscopic surgical technique which burns off the top layer of endometriosis but leaves underlying endometriosis tissue. As she underwent three ablation surgeries in 18 months, each had a worse effect on Wileman’s health and body. In so much pain, she was given a mix of morphine and nerve blockers. She became bedbound.
Eventually, through an online endometriosis community, Wileman heard about a surgical technique called excision. The technique cuts out endometriosis tissue and is considered the gold-standard of treatment by specialists. She has since had two excision surgeries for endometriosis and is preparing for another. She still lives with enough pain that she uses a cane to help her walk and a wheelchair as needed.
In images for her project, Wileman often focuses closely on people’s abdomens, annotating them with dates of the multiple surgeries they have undergone for treatment. In a social media campaign she kick-started, #THISISENDOMETRIOSIS, she encouraged people to recreate the look on their own stomachs.
A film she made, which shares her photo essay’s name, debuted at the Hot Docs Canadian International Documentary Festival this year and is on the film festival circuit. Created by a volunteer crew, many of whom had endometriosis, it uses Wileman’s own story as an example of life with the disease.
It is “a film that lets you know how it feels to have endometriosis,” she said.
The film also allowed Wileman to return to her endometriosis project years after she had stopped making pictures for it.
“I keep coming back to it, one way or the other,” Wileman said. “This project is bigger than me.”
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