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.