Allie Cashel and Erica Lupinacci are the mid-20s founders of Suffering the Silence, a community for those living with chronic illness. They are seeking to eliminate the stigma and lack of knowledge of those living with disease, and empowering those suffering from chronic illness to speak out and come together. Allie has published a book about this struggle,

Suffering the Silence: Chronic Lyme Disease in an Age of Denial

. This Sunday, they're hosting a live postcard display of the Faces of Invisible Illness at Jackson Square (the corner of 8th Ave and Horatio Street) at 11:30 a.m. We caught up with them as they finished up the end of their international book tour in the UK to discuss their work.

Why is a community for those with chronic illness important?

ALLIE CASHEL: When I was growing up with chronic Lyme, I didn't know anyone my age who was going through the same thing. Chronic illness affects identity, especially in young people, and without a sense of community sometimes it can be hard to understand and come to terms the experience. Community helps people feel understood and supported, it helps to push back against the feelings of isolation and silence that are so often associated with the chronic illness experience.

ERICA LUPINACCI: I was always open about my diagnosis but constantly downplayed my experience and pretended it was a lot easier than it really was. That made it more difficult for me to deal with the complexities of my illness on my own and made it harder for my loved ones to comprehend what I was going through. There isn't a space or language in our society for people to talk openly and honestly about illness.

Many people feel incredibly isolated and alone and a community can help them realize that there are others going through the same things, who understand and want to support them. Being sick affects more than your medical file, it affects every aspect of your life and we need the support to help us navigate that.

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Allie Cashel (via Suffering the Silence / Amanda Crommett Photography)

You two are just finishing up a book tour on the East Coast, West Coast and into the UK. Is there a specific person from the community or interaction that stood out to you?

EL: At one of our events, a woman brought her teenage daughter who had been very sick for the past few years. The daughter hadn't seen our work yet and really didn't know what to expect. At first she was very shy and seemed somewhat uncomfortable. As the event progressed, you could physically see the change in her as she began to relax and smile. She eventually raised her hand and told the whole crowd her story and became incredibly engaged in the conversation. At the end, Allie and I spoke to her for about 30 minutes; about our difficulties medically but also how our diseases have affected our career goals, school, our relationships.

She said she had never been able to talk to anyone about all of this before, especially someone close to her age. It was so moving to see her completely open up in a matter of hours. A few days later, she took her own Suffering the Silence portrait and shared it on social media. She has gone through so much and has had to fight such a difficult battle at such a young age, I'm still so inspired by her bravery.

The portrait project has been making the rounds on the Internet, with a bunch of media outlets latching onto the photos. Why did you choose a photo project to display the chronic illness community?

EL: Seeing photos of people who may not look sick, that you may never associate with illness, boldly and unapologetically showcasing their illness visually is incredibly powerful. We wanted people to understand that though you may not see it right away, this is something that is a part of us and something we have to deal with every day. I think that even if you aren't sick, you can understand how vulnerable taking a photo like that would be, which helps to articulate the intensity and experience of being chronically ill.

How will Allie's new book explore these stories differently from the online community?

AC: Suffering the Silence: Chronic Lyme Disease in an Age of Denial explores many of the same themes as the portrait series, the blog, and the online chronic illness world, but it focuses specifically on the patient experience of chronic Lyme disease. I think this experience is unique because patients living with chronic Lyme need to negotiate intense stigma and dismissal in the medical and scientific worlds, on top of the stigma they feel in their day to day lives. We all often struggle to find understanding and support outside of the illness community, but chronic Lyme patients need to fight to even be acknowledged by their doctors. The book works to explore the effect of that medical dismissal on the patient experience, which isn't always something we dive into online.

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Erica Lupinacci (via Suffering the Silence / Amanda Crommett Photography)


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Ty (via Suffering the Silence / Amanda Crommett Photography

How has working with each other help Suffering the Silence grow?

AC: I think Erica and I learn a lot from each other every day, and hopefully we can use those learnings to help others living with illness and disease. When we started working together, we started opening up to each other, and it was in those interactions that we learned the power of speaking to people and patients who don't necessarily share your diagnosis, but understand your experience. I think we're a good team, and together have helped to bring STS to much bigger audience than we could have done on our own.

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Reisha (via Suffering the Silence / Amanda Crommett Photography)

If there were one clear message that Suffering The Silence sends to the world at large, what would it be?

AC: Speak up! Talk and share what you have been going through. Once I started owning the truth of my experience, I found empathy in people and conversations that I never expected to find. Hearing other people share their experiences with illness helped me to better understand my own. It's helped my family and friends to better understand everything I've gone through, and with their support I feel empowered to engage with people who might judge or dismiss my diagnosis. There is power in our stories. If we continue to speak up, together we can erase the stigma that so often surrounds invisible and chronic illnesses.