Our Story
Our story starts over ten years ago.
Erica and I met in seventh grade. We were fast friends, the kind of friends who told each other everything. We’d leave school, go home, and sign on to AIM to talk about the 10 minutes we’d been apart. It was a typical middle school suburban friendship- impossibly close. And as we got older, we stayed just as close. We did theater together, went to parties together, traveled, had sleepovers. There wasn’t anything that happened in high school that we didn’t know about or experience together. But through all that time, there was one thing we didn’t discuss.
In 2009, during our senior year of high school we both experienced dramatic flairs of our respective illnesses – the worst that either she or I had ever experienced in our lives. And though we both knew that chronic illness was something we shared, we never reached out to talk about it.
During my senior year at Bard College, in an attempt to better understand the living experience of my disease and others who suffered from it, I conducted a series of interviews with chronic Lyme patients in New York and around the world. I have since developed those interviews into a memoir, titled Suffering the Silence: Chronic Lyme Disease in an Age of Denial. My interviews revealed a complex world of suffering within the Lyme community, one informed both by the illness and by the feelings of disdain and disbelief that surround it. People shared their stories with me from their wheelchairs and hospital beds, even though many of the people closest to them did not believe they were actually ill. These people helped me find my voice, and to find the desire to raise awareness about the truth of their experiences, a truth that has remained unspoken for much of our lives.
Erica and I reconnected after we graduated from college and moved to New York, and we quickly found that that suffering I found in the Lyme community was not unique to Lyme. People with chronic illness around the world feel that same silencing force – it was one we were all too familiar with.
Since then we have joined forces with the amazingly talented, Amanda Crommett, and have been working together to raise awareness about the living experience of chronic illness, and the social inability to accept and understand those who live with it.
We’ve learned that our story is actually a fairly typical one. Though we spent years without supporting each other in ways we wish we had, we’re making up for lost time. We’ve now learned how to talk to each other about our illnesses, and hope to bring that gift to people around the world.
The simple act of listening and sharing illness narratives has been an incredibly powerful and healing force in both of our lives, and we hope to use this space to continue to honestly and openly communicate those stories. Together, we hope our experiences will work to build awareness and reform the perception and treatment of the often silenced, chronic disease community.
It’s time to make some noise.
