“Coming out” with my FSHD diagnosis

This story about “coming out” with an FSHD diagnosis was first published in the 2014 summer issue of the FSH Watch newsletter. Its message is timeless.

The #FSHDselfies campaign

by Kelly Mahon Arlington, Virginia

My hands were shaking and my stomach was doing somersaults. You can do it, the voice in my head said. I was absolutely terrified.

When I hit “post” on my first ever selfie in honor of the FSH Society’s awareness and fundraising campaign, #FSHDselfies, my anxiety only heightened. Then my photo got a like. Then another…and another. I couldn’t keep up with the activity and comments.

By lunchtime, dozens of my friends had posted their own selfies to social media. By dinnertime, there were hundreds. From elementary school friends to high school and college classmates, to former neighbors, the CEO of my former employer, and even friends of friends I have never met posted selfies and words of support for me. I definitely found out what it feels like to “go viral”!

Like many of us with FSHD, I avoid having my photo taken. In fact, the worst day of the year growing up was always class picture day. My inability to flash a toothy smile has caused me to face inevitable questions every time someone whips out a camera. Why don’t you smile? Why so serious? Why are you never happy?

By participating in the selfie campaign, I was finally responding to all of those well intentioned but deeply hurtful questions in a positive way. And you know what? It felt amazing.

Before the FSH Society’s campaign, the only people who knew about my FSHD diagnosis were family members and a handful of close friends. But I knew I could not let the opportunity to raise awareness and money for research pass by. I reasoned that there never would be a better time to “come out.”

My support system was bigger than I ever knew

I won’t lie. Posting that selfie was the scariest thing I have done in recent memory. As a private person, I’m generally not one for selfies, let alone sharing personal medical information on social media. But, looking back, I am certain that coming out was the best decision I will make all year. I was instantly received with a world of support, even from places I did not expect.

The selfie campaign helped me realize that there is strength in weakness and beauty in challenge. The overwhelming response showed me that I will never face this disease alone. To my incredible support system: thank you. And to people living with the secret of their diagnosis, I hope you, too, will consider coming out.

Participating in the #FSHDselfies campaign was nothing short of life changing in how I view my support system … it’s bigger, warmer, and more accepting than I ever knew. FSHD gives us many burdens to carry. Only when you share your story will others know to help you lighten the load. More importantly, though, you’ll feel like a weight has been lifted. Even though the campaign is nearing completion, there’s never a bad time to raise awareness. Go ahead—post that selfie!