Living in Silence:
Eight years ago today, on Sept. 18, 2007, I was diagnosed with narcolepsy with cataplexy, a serious chronic neurological disorder of the sleep/wake cycle.
I told friends and family right away. Finally, I had scientific words to describe my mysterious symptoms. But I hated people’s reactions. Some acted as if I’d said I had a cold. Others laughed in my face.
So I stopped telling people and kept my narcolepsy private. This was convenient, as narcolepsy was an unwelcome addition in my life, so by ignoring it, I subconsciously hoped I could somehow ignore it out of existence.
“From most people’s perspective, there were no signs of illness or struggle written across my forehead. I brought the act to law school, diligently planned and orchestrated the disguise, playing the part of the perfect young woman I wanted so badly to be. It never tranformed me into healthy again, but it kept my dignity high, even when I was sweating, gagging and terrorized by my hidden side of life. I wiped away the spit, sweat and tears in the bathroom. I fooled them all, but I was also fooling myself.” -from Wide Awake and Dreaming: A Memoir of Narcolepsy
I ended up living a double-life – lost and alone with narcolepsy, and mad as hell.
Caught in a Catch-22:
After two years of silence, I realized I was caught in a catch-22. I didn’t like people’s misconceptions of narcolepsy, so I didn’t talk it. So people kept believing their misconceptions and I kept silent.
Someone had to break the silence and speak up about the real experience of living with narcolepsy. I decided to be that someone.
Breaking the Silence:
Six years ago, I started speaking up and I haven’t stopped since. I like to say I caught the “advocacy bug” – the best chronic condition in the world. Sharing my story has become my favorite thing in the world to do now. I love the intellectual challenge of changing perceptions, either through my writing or speaking.
My advocacy has taken on a life of its own and made my life with narcolepsy worth living. Looking back, I’ve accomplished more with narcolepsy than I think I ever imagined for my lifetime.
- I’ve published my memoir
- Created the first-ever scholarship for students with narcolepsy
- Become a public speaker
- Started my dream non-profit called Project Sleep
Eight years later:
While narcolepsy continues to challenge me daily, I keep learning better coping skills. Now, narcolepsy isn’t nearly as overwhelming and maddening as those first few years, I am much more at peace with it (not entirely, but most days!) and I believe this is because of two things:
1. Letting go of self-guilt and embracing narcolepsy as a part of me that I work with, not against, to succeed in life.
2. Finding support – with time, I’ve acquired a support system of amazing people who understand and accept me as I am. This network includes friends, family, co-workers, fellow people with narcolepsy I’ve met in person and through the NARCOLEPSY: NOT ALONE campaign.
Joining Suffering the Silence:
“The stigma surrounding chronic illness can leave people feeling misunderstood, alone, dismissed, and silenced. When someone doesn’t look visibly sick, one can often forget what their life is like behind the scenes. We will no longer suffer in silence.”
This is the powerful message of Suffering the Silence, an online community raising awareness of chronic and invisible illnesses, started by Allie Cashel (living with chronic lyme) and Erica Lupinacci (living with lupus). Suffering the Silence: Chronic Lyme Disease in An Age of Denial is also a new book out by Allie Cashel! I was thrilled to attend Allie’s book signing this week.
The photo series began with eleven portraits of New Yorker speaking out about life with chronic illness, breaking their silence and painting a living portrait of what it is like to live with chronic disease.
The campaign has gone viral and I’m thrilled to join. You can join too, let’s break the silence!
Thank you to Alex Withrow for taking these beautiful and deeply meaningful photos. I chose to the backdrop of Colette Miller‘s gorgeous angel wings in Koreatown, Los Angeles, to represent my personal transformation from silence to freedom; from fear to flying proud with narcolepsy.