When I was seven, I’d preen in front of my bedroom mirror with my sweater on my head, pretending the sleeves were long locks of hair. My parents insisted I keep mine in a bushy Afro reminiscent of Michael Jackson’s ‘do. I was delighted when I was old enough to braid it, curl it, twist it, straighten it and even wear it natural again as an adult.
The Initial Symptoms
It was a sultry summer day in Atlanta when I sat in a hair salon chatting with my stylist about my job and popular television shows. Then, suddenly, the hum of the blow dryer stopped. I watched her through the mirror staring at my head. “You have a bald spot,” she told me without meeting my eyes. I feigned interest in her life stories until I could make it home to obsess over the spot in my own mirror.
The next week I was in my doctor’s office admitting to bouts with fatigue. Being tired was never a catastrophe in my limited medical experience. But general malaise coupled with several bald spots convinced my doctor to run blood tests. My antinuclear antibody (ANA) test came back positive. That antibody is active in people with lupus, an autoimmune disease. I’d heard of lupus, but knew little if anything about it.
Then there was the hand-off to a rheumatologist, a specialist in the field. In a heavy South African accent, he told me that after further testing, I appeared to have discoid lupus, a chronic dermatological disorder. It’s typically isolated to the skin and can lead to scarring and hair loss. Going to an outdoor festival wasn’t as simple as eating hot dogs and funnel cakes under the sizzling sun of the South anymore. The sun became my enemy, with my doctor warning me that exposure could lead to rashes, joint pain and fatigue. I had to be more conscious about wearing sunscreen and limiting my time in the sun.
One day I was going to lunch with a friend and I was driving both of us. She asked to be dropped off at the door to the restaurant. What I assumed may have been a princess mentality or some degree of entitlement actually turned out to be something I never expected. She revealed that she suffers from systemic lupus erythematosus, a more severe form of the autoimmune disease. SLE can adversely affect the heart, lungs, kidneys, brain, joints and other organs.
Living With Unknowns
While I was grateful not to have the more serious SLE, coping with hair loss was a long, difficult journey. Every six weeks, I went to the dermatologist and squeezed a stress ball while she injected my scalp with steroids. I gladly tolerated the pain, because I would have done whatever it took to have a full, thick head of hair again. As my hair began to fill in, my rheumatologist discontinued my lupus medication. I thought it was because I was doing so well. Instead, he told me he wasn’t certain that I actually had lupus. While testing showed it was a possibility, he wasn’t prepared to make it definitive. After a few more visits and more tests, I soon discovered that lupus is a disease with vague symptoms and is often tough to diagnose.
Those who have lupus or suspect they may have it need to get comfortable with ambiguity. The symptoms often mimic a host of other conditions. But be sure to listen to your body and let your doctor know about your symptoms. Lupus can feel like a thief, attacking your body and leaving you helpless. There are things you can control though by eating better, exercising, avoiding stress, getting plenty of rest and limiting sun exposure. Just like lupus can be mistaken for a host of other ailments, those lifestyle changes can reduce your risk for many other conditions too.
The worst part about possibly not having lupus is that I still have no answers about what’s happening in my body. Something unknown has been masquerading as lupus and I can’t conquer it, because I can’t name it. Still, focusing on what I can control has made me feel healthier, stronger and more empowered.