Advocacy isn't as hard as you think: here's how I make a difference in people's lives by sharing my story with politicians.
Published On: Oct 24, 2019
Last Updated On: Nov 4, 2020
When I was growing up, the idea of an eczema community felt foreign to me.
I didn’t know a lot of other kids with eczema, though my mom did trade notes with a handful of other parents and forced me to go on several eczema playdates that were decidedly “meh.”
When I got older, I went to the American Academy of Dermatology’s summer camp for kids with skin conditions. I loved that all-too-brief week where my skin didn’t matter and spent the school year writing letters (and then, later, instant messages) to my camp friends, yearning to return.
Looking back, I realize I was craving community—the opportunity to connect with people who shared a similar experience.
Over the last year or so, as I started to write about eczema and the social meaning of our skin, I sought out community in the place it felt most natural: the internet.
There were—are—some very thoughtful eczema warriors sharing their experiences online in the hopes of helping others. There are also lots of false prophets peddling dubious treatments and baseless cures.
I did my best to sort through the digital flotsam and jetsam to find warriors that I connected with. I discovered the National Eczema Association and started to find my people. Then I went to Eczema Expo 2019.
Expo fueled me in a way I couldn’t have imagined. While I participated with gusto in lectures, seminars, and activities, it was the people who really energized me: kids, their parents, adults, my eczema Instagram fam—all of us doing our best to live well with our disease.
We chatted in the hallway or the coffee line. We decided on the spur of the moment to have dinner together or hang by the pool. We nudged each other and exchanged knowing looks during lectures. We giggled into the night.
Of course, the trouble with events like Expo is that they’re temporal. You feel so rich and full and buoyed by the whole thing, but it’s hard to transport the magic back to your everyday life.
But some sort of kismet must have been at work for me this year. About a month after Expo, I landed a new job in Los Angeles. It required a massive move—from rural upstate New York to LA’s west side—made all the more stressful by the fact that my husband, cats and stuff wouldn’t follow for a few more months.
I’m didn’t really know anyone in LA but decided I should reach out to a couple of new friends I’d met at Expo. LA is a massive, sprawling city, and by some miracle, my eczema friends lived right in the neighborhood where I landed.
“Moving to LA!” I texted. They sprang into action.
Shana, a brilliant and vivacious eczema mom who I met for a few fleeting minutes at Expo, and then corresponded with via email, generously set me up with temporary housing at a friend’s rental until my apartment was ready. Her family has this happy chaos that makes me feel right at home, and she and her husband are doing a great job raising a child who won’t let eczema stand in her way.
At Expo, I shared several lovely dinners with Anne Marre (a researcher by day, skateboarder by night, eczema warrior always.) Now, we live just blocks apart, and Anne Marre has taken it upon herself to become my neighborhood guide—she knows all the best haunts!
We recently had dinner with Ashley, who splits her time between New Jersey and this part of LA, and whose singular spirit uplifts everyone she meets. These relationships (formed at Expo, deepening here) are a source of unexpected joy and have given me a much-needed anchor in a new place.
We often talk about what eczema stops us from doing or what it takes from us. But this Eczema Awareness Month, I’m reflecting on how this disease has enriched my life. It has given me fortitude, empathy and something to say.
And now, thanks to Expo and this cross-country move, it has given me community. Thank you, eczema friends, for welcoming me home.
Sarah Harris is the founder of Skin Stories, a weekly email newsletter that shares stories of people with chronic skin conditions living full lives. Check it out and subscribe at https://www.skinstories.us. If you’re headed to Eczema Expo, join Sarah at the #awkward and Celebrate Your Skin panels. You can follow her on Instagram @sharris31.