My 15 Minutes of Scleroderma Fame

What in the world is going on with my phone? I held up my cell phone to show my fellow clueless Generation X friend the loud alerts that were beeping through cyber space. Um, I’m not really sure what’s happening, but I think my story just went viral.

And so began my brief encounter with fame. Who would have thought that a makeup-free selfie, an interview with Yahoo Canada, and a misunderstanding with the Facebook Ad team would garner worldwide attention? Not me.

In July of 2015, I wrote an article on my personal blog featuring my bare-faced selfie. After concealing my unsightly complexion with heavy makeup for 30 years, I used the photo and companion article to demonstrate the various ways scleroderma, impacts patients. Through a series of unfortunate events, the Facebook Ad team repeatedly rejected an ad I tried to place featuring the photo. I’m from Chicago, but my subsequent blog post chronicling the incident, Facebook Doesn’t Like My Face, caught the eye of Yahoo Canada and they ran an article about my mishap. Within days, my story was being covered internationally, and I was branded the “Facebook Doesn’t Like My Face Lady.”

A campaign challenging people to post makeup-free selfies on social media was born out of my embarrassing rejection. In less than 10 days, with around-the-clock support from my friends, we created a movement to inspire acceptance, redefine beauty, and raise awareness for scleroderma.

The Chicago Tribune was the first to run a hard-copy piece about the campaign launch; Face Off For Scleroderma. I was interviewed by the local ABC, NBC, CBS, and FOX  News networks. The story was picked up by affiliate stations and syndicated around the country. People Magazine also interviewed me and ran an online story.

Hours after our live campaign launch party, I was amazed to see my social media feeds filled with bare-faced selfies. Those posting the selfies were nominating other friends to do the same. Soon, Cosmopolitan, Redbook, Seventeen, Marie Claire, Good Housekeeping, The Daily Mail, Huffington Post, and other outlets were publishing stories about the #sclerodermaselfies movement. AOL created two video pop-ups highlighting my story, and Bob Saget, who is an advocate for scleroderma research, endorsed my campaign. The number of views on my personal blog skyrocketed and my story was being translated into languages around the globe.

The week following the campaign launch was madness. I received a steady stream of texts from friends letting me know where articles about me were cropping up. I was stopped by strangers who told me they had seen me on the news and thought I was brave and beautiful. Emails from people around the world were flooding my inbox, proclaiming I was making a positive difference in so many lives. Many sufferers of rare diseases expressed that my story helped them feel less alone.

In true celebrity fashion, I spent the next few days pulling old staples from my classroom bulletin boards to prepare for the upcoming academic year in the elementary school where I’ve taught for two decades. Famous people escape the limelight by flying their private jets to secluded islands. My husband and I hopped in our minivan and headed to a water park with our kids.

While on my exotic Wisconsin Dells getaway, my 15 minutes of fame expired. I happily returned to teaching, writing and professional speaking. In the months that followed, a writer from the U.K. contacted me requesting exclusive European rights to my story, and another U.K. television producer wanted to feature me on an international television series. Despite their charming British accents and convincing pitches, I declined their offers because they would cause major disruptions for my family and me. In December, Cosmopolitan Magazine selected me and fellow scleroderma patient, Chanel White, as the #6 Selfie of 2015. We were sandwiched between Kardashians. It was nuts!

My life is back to normal now, except for the occasional stranger at the grocery store paying me a humbling compliment. When meeting new people, my brush with fame sometimes comes up and they’ll say “Oh, I heard about that on the news….wait, that was you?”

My dalliance with fame also brought me some of the most magical, transforming and terrifying experiences of my life. The fact that exposing the flawed face I hid for 30 years brought me worldwide attention speaks volumes about why I tried to conceal my abnormalities in the first place.

I wouldn’t wish for my publicity to have stemmed from a mugshot-like selfie, but I’m thrilled that the circumstances allowed for a positive opportunity to elevate scleroderma awareness. I had the chance to be a voice for the voiceless and my “David and Goliath” saga inspired people to alter their perceptions of themselves and others. Like living with scleroderma, the experience allowed me to create meaning from a negative situation.

[Check out Lisa’s blog to learn more about her journey with scleroderma. Click here to learn more about Lisa’s memoir — Does This Hospital Gown Come With Sequins?]

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.