RECLAIMING MY BEAUTY

NIKKI LILLY, 15, WAS IN FIRST GRADE WHEN SHE RECEIVED AN EARTHSHATTERING DIAGNOSIS. HERE’S HOW SHE WOUND UP FINDING HAPPINESS— AND OVER A MILLION NEW FRIENDS—WHERE SHE LEAST EXPECTED IT.

- AMANDA MONTELL

When I was 6 years old, my parents noticed something strange on my face. At first, they thought it was a bruise. But the pain and swelling persisted. I just didn’t look normal. This led to many tests, scans and operations. Then, finally, a diagnosis: I have AVM (short for arteriovenous malformation), a condition that causes the blood vessels and veins in my face to get tangled, which means life-threatening bleeding, migraines, and swelling. Even scarier? There’s no cure.

I had started off life as a chatty, super active kid from London who did everything from gymnastics to football (or soccer, as you call it in the U.S.), ballet to Girl Scouts. But once AVM took hold, my day-to-day went from sports and activities to hospital appointments and staying home, too ill to do anything. I felt excluded, alone and isolated.

Even before I got diagnosed, YouTube was always one of my favorite things to turn to on a bad day. There, you can find anything that interests you.

Though I was just 6, I was obsessed with makeup— the magic of it, how it could transform someone’s confidence. It was 2010, and I loved watching tutorials by Zoella, Tanya Burr, Fleur de Force, Ingrid Nilsen, Blair Fowler, and Kandee Johnson. Makeup was basically an art form to me. I would spend hours and hours mesmerized by how people channeled their personalities into it and expressed themselves through different looks and colors.