Frustrated at not seeing her own experiences in endometriosis stories, Wileman, now 34 and a photographer and filmmaker, began photographing herself with the help of health care providers.
As her health improved, she began photographing others living with the disease she met through online endometriosis communities. She wanted to create a “real representation” of what the disease looks like, who it affects and how it affects their daily lives.
“It was really a very powerful experience,” Wileman said, reflecting on the first time she photographed another person with endometriosis. “It was the first time I spent time with someone who was as sick as I was.”
The result is “This Is Endometriosis”, a photo and documentary film project and social media campaign, #THISISENDOMETRIOSIS. One of the goals of the project was to dispel a long-standing misconception that the disease only affects childless white women. Endometriosis affects about 10 percent of those born with a uterus, regardless of race or gender identity.
A long delay between the onset of symptoms and the diagnosis of endometriosis is common, said Iris Kerin Orbuch, an endometriosis specialist from California.
“You can imagine 10 years of pain, 10 years of bowel problems, 10 years of anxiety and depression because they walk into a doctor and they look normal,” says Kerin Orbuch, explaining that the physical and psychological effects of endometriosis can be exacerbated. after a while. She compared the increase in pain to the difference between stubbing a toe and stubbing a toe every day for 10 years. “What happens is your whole body feels like it’s on fire.”
Despite the long list of symptoms, endometriosis is often 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.
The severity of the disease is also often misunderstood. “A person can have a belly full of endo and not be in pain,” Kerin Orbuch said. “Someone can have a spot of endo and be in extreme pain and use a walker.”
When Wileman was diagnosed, she was first treated with ablation, a laparoscopic surgical technique that burns away the top layer of endometriosis, but leaves underlying endometriosis tissue behind. Because she underwent three ablation surgeries in 18 months, each had a worse effect on Wileman’s health and body. With so much pain, she was given a mix of morphine and nerve blockers. She became bedridden.
Eventually, Wileman learned about a surgical technique called excision through an online endometriosis community. The technique excises 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 in so much pain that she uses a cane to help her walk and a wheelchair when needed.
In images for her project, Wileman often focuses closely on people’s abdomens, annotating with data from the multiple surgeries they have undergone for treatment. In a social media campaign she started, #THISISENDOMETRIOSIS, she encouraged people to recreate the look on their own bellies.
A film she made, which shares the name of her photo essay, debuted at this year’s Hot Docs Canadian International Documentary Festival 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 living with the disease.
It’s “a movie that lets you know what it feels like to have endometriosis,” she said.
The film also allowed Wileman to return to her endometriosis project, years after she stopped taking pictures for it.
“I keep coming back to it somehow,” Wileman said. “This project is bigger than me.”