Going public with a chronic disease diagnosis.
On the morning of my 27th birthday, I sat in a hospital bed, typing carefully into the Notes app on my phone. I was drafting a social media post to share the news of the Crohn’s disease flare-up that had carved a fistula (tunnel-like hole) into my intestines. The subsequent sepsis infection had landed me in the emergency room.
I was exhausted from a four-day hospital stay full of 4 a.m. blood draws, CT scans, and waiting what seemed like forever to talk with my doctors. It would be easiest, I thought, to just update everyone who followed me on social media in one go. The only problem: I couldn’t figure out what to say.
When I did eventually land on the right words, the response was surprisingly, overwhelmingly positive. It not only reaffirmed my decision to share about my Crohn’s disease on social media, it helped me chart a new path forward in how I handle the condition—and how I view myself.
At first, I worried that talking about my Crohn’s on social media was too personal, too unfiltered for Facebook and Instagram.
I paused as I struggled to find the right words, my eyes welling as I looked at the birthday balloons and flowers sitting on the window sill, day breaking into orange behind the white blinds. As anyone with a chronic illness knows, talking about your health—and fielding the resultant questions—can be an exhausting, vulnerable act. I’d told a few loved ones I was in the hospital, but most people I knew didn’t even realize I had Crohn’s.
|Read on: Why I Decided to Reveal My Crohn’s Disease on Social Media | SELF|