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.
I grew up on boats in south Florida, and suddenly there I was, trapped indoors or harassed by my mother to wear hats and heavy sunscreen. Even though no one teased me at the time, I was irritated by all the questions people would ask when they saw the rashes or knew I had lupus: How did you get it? What does it feel like? I had little patience and got angry very easily. Whenever I find old photographs of myself, I throw them away. My mother gets furious. But I hate looking at them, not simply because my face was fat and my hair was thin, but because the photos captured a very scary time.
I’ve since managed to overcome my self-consciousness. Finding the right high school made a big difference. I enrolled in an art school, and the friends I made there looked past the moon face and rashes. When we hung out at the beach, they’d offer me an umbrella. When we had sleepovers, they would suggest going to bed early. (They knew I became easily fatigued.) And when I started dating, in 11th grade, it was never awkward or stressful because I’d only date people who were already my friends.
As for my look, wigs are not my style, so when my hair became too brittle for extensions, I’d wear it in a ponytail. I’d color in the thinned spots with brown eyeshadow and add volume with a brown-colored hair powder from Bumble and Bumble. Depending on my mood or the occasion, I’d sometimes wear a bandanna or a baseball cap or a big floppy hat.