My boyfriend tells me I look beautiful just the way I am. But I don’t care what he thinks. It’s not about him. It’s about me — how I think I look and how that makes me feel. And so, every morning, I go through the same ritual: I wash my face and moisturize, and then, to my boyfriend’s dismay, I apply concealer. Not a lot. Just a dab. On the butterfly-shaped rash that covers the bridge of my nose and my cheeks.
I have lupus, a disease that’s mysterious, erratic, and, for now, incurable. It happens when the immune system can’t tell the difference between harmful foreign substances and its own healthy cells and tissues. As a result, it goes awry and begins to fight the body’s own cells, causing inflammation. This means unpredictable bouts of joint pain, swelling, fatigue, fever, chest pain, and nausea. It also means you’re very sensitive to the sun, and for 42 percent of lupus sufferers, you develop that telltale rash on your face, as well as blotchy welts on your shoulders and arms.
Terrible things can happen when lupus goes untreated — from kidney failure to heart attacks and even death. But for a girl growing up in bikini-clad beach towns all her life and trying to fit in, it’s the disease’s unpredictable effects on the skin, hair, and body shape that are especially exasperating.
I didn’t realize I had lupus until seventh grade. (Lupus can occur at any age, though most sufferers I’ve met have been adults.) My family had just moved from Clearwater to Palm Beach, FL. Being the social girl that I am, I made new friends easily, and we’d have a great time at the beach. That ended when I went on a marine-biology trip to Key Largo for school. We’d been in the sun all afternoon on a boat when I noticed welts on my forearms. When I got home, my mother promptly took me to the dermatologist, who diagnosed lupus. After a second and third opinion, we finally accepted it.