When I was a kid, I was diagnosed with lupus. For the past 10 years, I’ve been on a steady cocktail of drugs designed to combat swollen joints, mouth sores, and kidney failure. For a while, they worked. But when I was 21, I was diagnosed with thyroid cancer. My thyroid was removed, I underwent radiation, and lupus threw a party in my body to celebrate. And so for the past four years, I’ve been on prednisone, a highly toxic steroid used to stop my body from killing itself.
Prednisone is often used to combat the inflammation brought on by autoimmune diseases. By bolstering the body’s natural level of cortisol, it changes the way the body’s immune system functions and prevents swelling. Lupus patients usually take it to keep their organs functioning; prednisone is effective in reducing damage to the brain, kidneys, heart, lung and liver. But aside from its life-saving skills, it can also cause side effects like insomnia, depression, manic behavior—and extreme hunger for Fruity Pebbles (in my case, anyway).
Most notably, prednisone can trigger something called moon face. The description is painfully and comically accurate: you could stick an American flag in my forehead, hang me in the sky, and I doubt anyone would notice.
Between lupus’s signature malar rash (a butterfly rash that causes facial redness and for everyone and their mother to tell you to put on sunscreen, to which I’ve taken to replying: That isn’t effing sunburn and hey, your face sucks too) and prednisone’s swelling, I have a hard time feeling good about my face. Sure, my eyes are Pierce Brosnan blue and I look killer in sunglasses, but ole moon face is no one’s idea of pretty.
On these bad days, I step out of bed and look in the mirror at the bloat in my face. I wish it away. I am modest but my face is prettier without the bloat. Sometimes, I perversely imagine a man looking back at me in a taxi cab and thinking “What a pretty face she’d have without all that fat.”
I fantasize banging balled-up fists onto the back of his leather seats, screaming that it is not my fault. That I hardly eat, I hardly eat at all. I’ve lost my appetite so many times that Glucose Control Boost shakes are my treat of choice these days. (Hey, the chocolate flavor’s not bad.)
Although no cab driver has had the nerve to say this to me, I’ve received plenty of comments about my face. “Did you go tanning with those little goggles on?” One girl in high school asked me this every single day. The answer was always the same: This may be the Jersey Shore, but I don’t go tanning.
One day, after she had asked me for at least the twentieth time, I turned around and asked her if she was deaf. “NO. Like I said yesterday, the rash is from lupus. It’s a disease that will probably kill me. Please stop asking me if I went tanning.”
That was the start of my honesty policy. Just tell the truth, I thought. They’ll never ask again. And so I have. For nearly eight years, I have told the truth—albeit in a gentler, kinder way. It has made people squirm and spurt out apologies, and it has made my face burn a darker red.
Sometimes a week or two will go by and no one will ask. I live in Los Angeles now, where a sunburned face is more common in the dead of winter than in New York. People are less rude out here too; if it looks like your friend got a chemical peel, you dare not ask, because it’s probably true.
Two weeks ago, I went to get my hair colored. The women who run the salon are older and unabashed in their fashion and hair advice. The woman cutting my hair asked if I got a chemical peel, because my face was so “swollen and dry.”
“Nah,” I laughed. “I’m only 26. Maybe next year.”
“Then why is it so red?” she pressed.
Although I’ve heard the question at least 100 times, it always makes me nervous. Jumbling my words, I tried to explain the disease and prednisone and its side effects.
“No,” the hairdresser said. “You are too young to have lupus.” I coughed and said 10 years of tests proved otherwise, but she persisted. “You are not doing enough for that face. What are you eating? Your face should not be so bloated.”
I sunk deeper in my chair and said nothing more. I refused the blow dry, knowing that would only make my face an angrier red. Maybe she’s right, I thought as she finished up. Maybe I deserve to look this way. Maybe the outside should match the terror on the inside.
But as I drove home, I became enraged. Why do we do this, I thought. What gives us the right to comment freely on a stranger’s looks? I can’t control this disease any more than she can control the traffic on the 405.
I’ve spent years being angry that my health is so reliably crappy. I have mourned for what I have not been able to do. I’ve cried over the youth that is lost to cancer and I have looked in the mirror and sobbed at the incisions made in my face to remove a bout of the bacteria MRSA.
I’m not angry at my disease anymore, or the hand I was dealt. But I am angry that in our society, it’s acceptable to say mean things about other people’s appearance, especially to their face. It’s not right. Ashley Judd’s recent op-ed, in which she decried the recent media speculation about her face, is a good reminder of just how wrong this looks-based society is. The international speculation and critique over her face is every steroid-treated patient’s worst nightmare. It’s a nightmare for every person who feels even a little bit insecure. It’s recess bullying, on a larger stage, and worst of all, it’s done by adults. It has to stop.
Each morning I take the prednisone and it sticks in my throat. Today it stuck a little bit more, unwilling to go down, as if my body knew what would happen when it mixed into my bloodstream and went about saving my life. I went to yoga and when I came home, I iced my knees and I stared in the mirror and wished we would all cut each other a little slack.
I think we need to.