The Brave Face
By Joanne Chen
Diagnosed with disfiguring lupus at 12, Nicole Paxson channeled her
frustrations into an innovative makeup line.
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.
To control the rashes and the inflammation that causes them, I had to go on
the steroid prednisone. But its side effects on my skin, hair, and body were
drastic. The drug causes a redistribution of body fat and fluid retention, so
my hands puffed up, and I had this horrible moon face. I also continued to
develop welts on my shoulders and arms, and my hair fell out in bizarre
patterns — mainly on the top of my head and at the sides.