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.
Tell us about how the Suffering the Silence photo trend took off.
Erica: The photo series started last summer before we left on Allie’s book tour. It was really exciting because we basically just started having a casting call and putting out notices in as many communities as we could for our initial shoot. We were really proud of it. On its own, it just felt powerful and really beautiful. Once we put it online and started getting press and it started reaching people that hadn’t been in our network before it kind of exploded, which was so incredible and so moving. People from all over the world started doing it. For a lot of people it was the first time they had ever publicly displayed their diagnosis and what they were living with. On social media that can be a very powerful and eye-opening thing for a lot of people in their lives.
So many people have shared photos and stories and benefitted from the Suffering the Silence community. What has been most rewarding about the project for you?
Allie: One of the coolest things about it was it the ripple effects through people’s own lives were also really sort of amazing and inspiring to watch. Family members who would reach out and say “Wow, I didn’t realize this person was suffering with this.” [Sharing your story] helps to build your own community, but also reinforces the relationships in people’s lives.
Erica: Seeing people finding their own voice and starting to advocate for themselves and helping people do that. And also finding my own voice and seeing how this experience has changed the way I articulate my experience and stand up for myself, and just seeing that that has happened for other people has been very inspiring to me. Some people had never told anyone in their lives [about their illness] and all of a sudden they post this photo and share their story and tell all these intimate details of their lives. Just to see that bravery and to see the things that people have gone through and the fact that they’re still so positive and so strong and so willing to fight for their health and happiness has been really amazing to see.
Is there anything you’ve learned along the way that you wish you knew before starting this project?
Erica: Be honest about your experience and try to stay in touch with your feelings and what you’re going through. There are so many people who understand what you’re going through, and although it can feel so isolating, there are people out there for you.
Allie: Let people surprise you. I was so terrified all the time that I would say something about my illness experience and that I’d be judged, or people would roll their eyes. But almost every time, I’m greeted with such empathy and such a desire to help and good questions about what it really means for me. If you are open and you let yourself be positively surprised by people, they can rise to the occasion to give you what you need and give you the conversations you need to have. It’s not going to happen all the time, but I think we need to have more faith in each other, and to accept each other for who we are.
What does the future hold for Suffering the Silence?
Allie: We are definitely hoping to grow and to continue to share people’s stories, to continue to reach out to people and make them feel like they’re part of a community that matters and makes a difference. We want to continue giving people a way to express themselves… Hopefully down the line it will all stay as creative and honest and and raw as the work we’ve done so far.
For more on Suffering the Silence, check out this video by North Atlantic Books:
Article originally published May 24, 2016 on Chronicality.com