Suffering the Silence: Behind the Scenes With Allie Cashel and Erica Lupinacci
Allie Cashel and Erica Lupinacci have been best friends since middle school, but it took them years to openly discuss their chronic illnesses with one another. Allie, 25, who is the author of Suffering the Silence: Chronic Lyme Disease in an Age of Denial, has been living with symptoms of Lyme disease since she was 7 years old. Erica, 24, was diagnosed with Lupus when she was 18.
“Once I started working on the book, Erica and I started talking about what we had gone through,” says Allie. “Even though we had different diagnoses, so much of our shared experience was the same. As we talked about this we realized there wasn’t really a place for people with all different chronic illnesses to come together.”
The pair started the Suffering the Silence online community as a way to change that. It’s a website, a photo project and a place to share stories — and has inspired hundreds of people living with invisible illnesses to open up about their experiences. Spinning off a photo series the friends published, people share photos of themselves with their diagnoses written on their arms, captioned with stories about what it’s like living with their symptoms. And the hashtag #SufferingTheSilence has become widely used for sharing chronic illness moments. Read on to learn more about the movement, and what Allie and Erica have learned along the way.