Science and Tech


Women With Chronic Illness Are Becoming Their Own Advocates

More than 100 million people have at least one chronic health condition, and young women are hit particularly hard.
Posted at 9:30 PM, Jun 27, 2018

Arielle Coree doesn't remember the tick bite. But she's now one of the more than 100 million people with at least one chronic health condition. While Lyme disease affects more than 25,000 people annually, 10-20 percent of those have symptoms that linger for years, like Coree's. She was also diagnosed with two other chronic infections.

"You're constantly downplaying how sick you are. Like, you're getting an IV drip for five hours every day," she explains.

It’s estimated by 2030, 83 million people in the U.S. will have three or more chronic health conditions, up from 31 million in 2015. Young women are hit particularly hard by chronic disease. Diagnosis in men catches up with age, but the disparity still means many women are living more years of their life with chronic disease. The National Center for Health Statistics defines chronic disease as lasting three months or more. But many patients suffer for much longer before being diagnosed. 

Take endometriosis, for example. It's a painful inflammatory reaction caused by tissue forming outside the uterus. Even though one in 10 women in their reproductive years suffer from the chronic illness, studies show women see seven to 10 doctors on average before one gives them the diagnosis.

"Dismissed, or feeling diminished or disbelieved by the health care providers. Which isn't necessarily health care providers' faults, it's just a cultural reality," said Shannon Cohn, a filmmaker who has endometriosis.

But some patients are finding meaning by sharing the trials of their different chronic illnesses. Coree's connected with thousands on Instagram. Cohn created a documentary and lobbied lawmakers. Cohn's most recent campaign about endometriosis launched with support from Sens. Elizabeth Warren and Orrin Hatch. It included an open letter asking policymakers to give chronic illnesses more time and research funding.

"That film has a very specific purpose: To educate young girls and women so they can take power and feel empowered to talk to their health care provider," Cohn said.