Erica Lupinacci and Allie Cashel both have chronic illnesses. But unless they tell you, there’s almost no way to know that — they don’t “look sick” or “act sick” most of the time. And this, they both say, can be difficult.
“I think a lot of people, when you say you’re sick and when you tell someone your diagnosis, it can go two ways,” Lupinacci said. “Either because it’s invisible, they assume that it’s not that big of a deal and that you’re okay — or people assume that you can’t do things. They see you as just your illness. They don’t see you as a full person with dreams and goals, that you’re just like everyone else, but with an extra challenge.”
Recently, Cashel and Lupinacci have addressed that problem head-on in a book by Cashel and web campaign called “Suffering the Silence,” which is aimed at enabling those with chronic illness to discuss their illness publicly and on their own terms. Participants write the name of their illness on their arm and pose for a photograph with their hand covering their mouth. A small paragraph under the photograph tells the participant’s story. The campaign began with the series of photos, like the ones pictured here, but anyone can post their own image online with the hashtag #SufferingTheSilence.
The pictures and captions are powerfully honest, painting a picture of a complete person — not just an illness.
“That’s really what we’re trying to do with the site and with the campaign,” Cashel said. “Focus honestly on what life is like with chronic illness, but also not to harp on it, to find ways we can integrate it into our daily lives in a positive way.”
For many people with chronic illnesses, finding a space like the web campaign, where they describe their experiences on their own terms, is difficult, Cashel said.
“These illnesses affect so much more than our bodies,” she said. “They affect our friendships and relationships; they affect our identities. And I think that’s really hard to talk about.”
Currently, approximately one person a day posts their image online. But the campaign is not just about those on the site. It’s also about helping those with chronic illness who may not want to pose for a portrait or write up their story yet.
“A lot of people reached out and have said they’ve used the portrait to communicate to their loved ones what it’s really like to live with this,” Cashel said. “And that’s what we wanted from the start, we wanted this to be a platform to use to help people communicate their experience.”
For Cashel and Lupinacci though, the web campaign has had a more personal effect.
“It’s been incredibly therapeutic for me,” Lupinacci said. “This has helped me so much. It allows things to not get backed up so much and I can process things a lot easier. It’s kind of crazy just having all of this out there, but it’s also kind of a relief.”