Just a few months before the 2016 Presidential election, I was sitting with a woman who I had only met once before. I was there to interview her for a project titled, “Illness & Identity,” a series of photographs and interviews that attempt to explore the ways that chronic illness and mental illness experiences intersect with other aspects of our sense of self. When I asked her who in her life was her biggest ally, or who supported her most through her experience with disease, she started to cry.
“I’m sorry,” she said. “But no one. I’ve never really talked about this with anyone before.”
That hit home for me. For much of my life, I lived with a chronic illness but almost never spoke about it. Polarizing debates in the medical world combined with the deep social stigma around illness, left me terrified that people wouldn’t believe I was really sick, or worse wouldn’t want to engage with me after realizing I was. So instead, I didn’t tell anyone about my experience. I stayed silent.
Illness and the stigma that surrounds it
I have come to discover that this experience of staying silent, of not speaking up about the complexity of experiences with illness or disability, is all too common. According to the Center for Disease Control, as of 2012 at least 117 million adults in the United States – almost half of us – were affected by “one or more chronic health conditions.” Despite these high numbers, our society still does not like to engage in conversations and dialogues about disease. And as a result, those living with illness can feel stuck in a complex world of isolation, one informed both by actual illness/disease and also by the feelings of disdain, stigma, and disbelief that surround it.
As Susan Sontag writes in her famous book, Illness as Metaphor, “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
This is something I’m unfortunately familiar with. I know the “night side of life” well, and I know how difficult it can be (especially as a young person) to tell people that I’ve been there. But I also know how helpful it can be to speak up and to connect with others who have travelled to “the night side.”
Over the past 5 years, I’ve read and listened to hundreds of different people speak up and share their illness stories from “the night side,” and have personally felt the healing benefits of those conversations. I’ve worked alongside organizations like Positive Exposure, Diversability, AbleThrive, MightyWell, MyCounterpane and Zeno Mountain Farm and have learned from them as they elevate voice, start to breakdown the stigma, and push back against negative feelings associated with difference.
As the co-founder of The Suffering the Silence Community (a 501c3) I’ve also worked to help create space and opportunity for members of the chronic illness, mental illness and disability communities to speak up, share their stories and continue the break the silence that so often surrounds this community.
The power of listening
As I sat with the woman I met just a few months before the 2016 election, I found myself thinking about how may people face struggles or challenges that they have never been able to talk about. Illness and disability cut across race, gender, socio-economic, and religious groups without discrimination. And I know so many different marginalized communities are cut out of conversations or simply not given the platform to speak up and share their stories and experiences. The silent suffering that plagues the illness community permeates through much larger communities as well, and I often find myself thinking about how many narratives we never get to hear or empathize with because we aren’t listening for them.
We live in an incredibly polarized society right now. Even at the dinner table we worry about sharing our thoughts and experiences because of how our friends and family may react.
It seems we’ve lost the ability to listen to each other, to actively engage and celebrate the diversity and complexity of our experiences. That scares me. And it scares me even more to think about how that inability to listen affects the institutions both in government and in the private sector that shape our day-to-day lives.
We all have a story to tell, but we rarely have an audience willing to listen to our stories with open ears. I wonder what would happen if we all took a moment to be that audience for people, to encourage listening, empathy and understanding in a system that seems to be devoid of that. Despite difference, our lives have meaning, and I hope we will all have a chance to experience the feeling of sharing our stories and realizing that we have made some impact in doing. I hope at some point, we will be able to listen other without fear and to actually believe and that conversations can create change.
About the Author
Allie Cashel is author of Suffering the Silence: Chronic Lyme Disease in an Age of Denial and the co-founder of Suffering the Silence, a 501c3 dedicated to breaking the stigma around chronic illness and invisible disability.