This photo project is shedding light on the millions who live with an invisible illness
In the United States alone, over 117 million people live with a chronic health condition, many of them invisible diseases and illnesses. That’s nearly half of the U.S. adult population; yet, even though they affect so many people, they aren’t something we talk about nearly enough.
Luckily, one photo series is here to change all that. Started by recent college grads Allie Cashel and Erica Lupinacci, Suffering the Silence: Portraits of Chronic Illness hopes to shed light on all the invisible illnesses that are so often overlooked, stereotyped, and stigmatized. Each photo features someone with a hand over their mouth, and their diagnosis written in paint on their arm — and for a series about “silence,” the photos speak volumes.
For Cashel and Lupinacci, Suffering the Silence is personal: Cashel was diagnosed with tick-born Lyme disease at age seven, and her best friend Lupinacci was diagnosed with Lupus in high school. The two first started working on SufferingTheSilence.com while Cashel was finishing up the first draft of her book, Suffering the Silence: Chronic Lyme Disease in the Age of Denial, which came out earlier this month. The book specifically explores the experiences of those living with chronic Lyme and other tick-borne illnesses; but, ultimately, led the pair to realize the similarities in how we discuss most invisible diseases.
“As we started talking about their experiences, and about our own experiences, we saw so many parallel themes and ideas,” Cashel tells HelloGiggles. “We founded the website to continue the work I started with the book, and create a space for people with all diagnoses to share their stories and break the silence and stigma around chronic illness.”
“The portrait series grew fairly organically out of that structure,” she continues. “We wanted to find a way for people to share their experience without writing a longer form piece, and photos seemed like a powerful way to own the experience of disease, without writing 1000 words about it.”
It’s an incredibly accessible medium with a very powerful message: Just because someone “looks fine” doesn’t mean they aren’t dealing with chronic pain or illness. By showing a diverse range of the people affected by these conditions, Suffering the Silence also aims to help dismantle some of the biggest misconceptions about living with an invisible disease.
“People tend to think of people living with invisible and chronic illness as over-dramatic, or as lazy or unambitious,” Cashel tells us. “They don’t always realize how much energy and effort it can take just to get out of bed some days. Living with a chronic illness affects every aspect of your life and your identity.”
“The experience of it is often over-simplified,” she continues. “We hope that this project can help to bring a better understanding to how complicated life can be with this, and can help people who are living with illness to feel that they are better supported by people outside of the illness community.”
It goes without saying that a disease or illness is never the only thing that defines someone; but it remains as important as ever that we erase the stigmas associated with having one. As Lupinacci told Mic, “Chronic illness affects our lives not just our bodies.” It’s only by fostering visibility that we can begin to ease this.
“People don’t understand the amount of effort and energy it takes to manage your daily life,” Lupinacci tells us. “Every day you have to assess your energy level and how much you can handle that day. It can be heartbreaking to have to say no to things you desperately want to do or have to ask for help to accomplish seemingly simple tasks.”
Suffering the Silence is representative of a diverse range of people with a diverse range of experiences. By giving a face to something often considered invisible, the series reminds us to never make assumptions about others, and to always treat people with respect and kindness.
“We hope this project encourages to people to think about those of us living with chronic illness as full, complete people,” Lupinacci says. “We also hope that it continues to bring the experience of chronic illness into the public eye, and creates a safe space for people to speak out about what it is really like to live with these conditions. As this happens, we hope this campaign can help to increase acceptance for some of the more controversial diagnoses so many of us are dealing with.”
“While we are on the road, we’d love to meet as many people who have been affected by illness as possible,” she continues. “We want to hear people’s stories, and work together to encourage more people to speak out and break the stigma around living with chronic disease.”
Check out a few more images from the series below, and find out more about Suffering the Silence on their website or by using the hashtag #SufferingTheSilence on Twitter, Facebook, and Instagram.
(Images via Suffering the Silence.)