BALTIMORE — "Lupus is like the invisible illness. Some days, I'm perfectly fine—I can do a cartwheel. And then other days, my joints are so locked up I can't move my arms," said Malaun Dodson, a Baltimore woman.
Navigating symptoms is just half the battle; the other half is getting diagnosed. It was during her college years that Dodson began to feel her body failing her.
"I couldn't walk without needing to find support or having my arm linked with someone," Dodson explains. “One of my biggest symptoms when I flare is my bowel shutting down. So, imagine not going to the bathroom for three or four days. In conjunction with that, I would throw up stomach acid because I wasn’t really eating because you don't have an appetite and you have to go to the bathroom but your body's not letting you so it's kind of really like your body is truly attacking itself and shutting down,” said Dodson.
It took a year for doctors to diagnose Dodson.
"I was misdiagnosed a few times. They almost took my appendix out. Endometriosis, appendicitis, and Crohn's—all before being diagnosed with lupus,” said Dodson.
But Dodson says she is grateful—because, on average, it takes six years for a lupus patient to get the right diagnosis. Until then, many people suffer for years with little treatment and few answers.
"It was a lot of running myself into the ground, trying to keep up with my regular everyday life while still trying to learn and understand how lupus was affecting my body,” said Dodson.
More than ten years later, Dodson isn’t shy about sharing her story.
"I'm a part of different groups and I hear so many stories about people having to deal with lupus by themselves."
Dodson’s support system gives her strength when her own energy is depleted. Constant fatigue, fever, inflammation, and pain are common symptoms of lupus—but that’s just to name a few.
"I lost all of my hair in 2016. I started my big girl job—my career in IT—and I thought it was just the stress of transitioning into adulthood. But it turned out to be the lupus,” said Dodson.
Her boyfriend at the time, now husband, stayed by her side.
"I was just nervous about how he would perceive me—if he thought I would still be beautiful,” shared Dodson. "I remember first having to get my hair cut. When it would grow out, my husband would cut it for me. After finishing, he would give me a kiss on my head, and I don’t know—I just feel empowered today."
Dodson has been running her own wig business, Laced by Laun, for seven years now.
"I enjoy being able to show people that you can still live a very full life while having this illness."
While treatment has come a long way, there’s still no cure. Lupus is often labeled the "invisible disease," but the cost isn’t.
"I take a monthly infusion of Benlysta for Lupus, and the infusion is $9,000."
Fortunately, her insurance covers a majority of the costs. But she says that's not the case for everyone. That's why she's so active with the Lupus Foundation of America and its Baltimore chapter—because every dollar raised is a step in the right direction.
"Last year was a tremendous year for lupus awareness and advocacy. I set a goal to raise $500, and I ended up raising over $2,000."
It’s money that is crucial in the fight against the disease. The exact cause of lupus is unknown. Ninety percent of people diagnosed are women, and it's two to three times more common among women of color—mainly Black women.
"Live your life. Enjoy. But always get back up. Always intentionally try. But it's not always easy. It's not always easy,” said Dodson.