“I was a cross-country runner and a cheerleader. I thought, how was I supposed to show up in my uniform? I have all these spots. My mom would wash my sheets every day.” Skeptical of the ringworm diagnosis, Wilson’s mother took her to get a second opinion, then a third. None of the doctors could pinpoint the problem, and psoriasis didn’t even come up as a possibility. When Wilson learned her cousin had psoriasis, she looked it up in a medical book, and her mother asked a dermatologist to give her a biopsy. Her mom had to talk the doctor into doing the test. “That’s when I started realizing Black people and other people of color often go undiagnosed or misdiagnosed because doctors don’t know what [psoriasis] looks like on us,” says Wilson. Then, about, four years later, Wilson started feeling pain in her hips — one of her first signs of psoriatic arthritis (PsA). She recalls, “One day I was reading something about psoriasis, and it mentioned that a percentage of people who have it develop something called psoriatic arthritis. I started to think, whoa, this sounds a lot like what I have.” Yet more than a decade went by before a physician suggested that Wilson could be experiencing psoriatic arthritis symptoms. Today, thanks to doctors she trusts and a commitment to keeping herself informed, Wilson is better able to cope with her psoriatic arthritis and psoriasis symptoms. Determined to empower herself and other women, she founded the skin-care line Demoseà in 2015, focusing on what she calls “uncomplicated skin-care for complicated skin.” Wilson wants to do what she can to ensure that the Black community and other people of color with skin-related diseases get attentive and timely medical care. “I know how it felt to be misheard or misunderstood or misdiagnosed, and I’m trying to talk about it as much as I can, so people don’t have to go through what I went through,” she says. The long wait for a diagnosis can take a toll, says Ashira Blazer, MD, a rheumatologist at NYU Langone Health in New York City and co-chair of the American College of Rheumatology’s Diversity, Equity, and Inclusion Task Force. “Patients of color tend to report higher pain scores for psoriasis and psoriatic arthritis,” says Dr. Blazer. “The caveat is that those patients tend to have less access to care and tend to be diagnosed later.”
1. Learn What Psoriasis and Psoriatic Arthritis Symptoms to Look For
One doctor Wilson went to when she developed her first skin symptoms didn’t believe she could have psoriasis, telling her this condition doesn’t affect the Black community. “That kind of gave me pause,” says Wilson. “What does me being Black have to do with me having a skin disorder?” Blazer believes that misperceptions and insufficient data on how skin diseases impact people of color are a widespread issue. “The estimated prevalence of psoriasis and psoriatic arthritis is somewhat less in patients of color, so for example 3.6 percent of Euro Americans versus 1.9 percent of African Americans,” she says. “It’s possible this is a true difference, but it’s also possible that it’s underdiagnosed in African Americans.” The medical textbooks available to doctors in training are another problem, says Blazer. “The skin findings look different in African Americans and people of color,” she says, but “the medical texts are much likelier to represent fairer skin examples.” For people of color, a symptom of psoriasis could be “a raised rash that has scaling on it — in darker skin it can look a little bit purplish or violaceous in color,” says Blazer. “If it’s persistent, that can be a sign of psoriasis. There can be changes in the nails, like pitting. A lot of patients can experience a raised and scaly scalp.”
2. Write Everything Down and Take Pictures
“Do your research and write things down,” says Wilson. “Keep track, so you have an idea of what’s going on with you. For example, I’d notice that when I had stress, I’d get more flare-ups.” When she saw the rheumatologist who eventually diagnosed her psoriasis, “I had dates and times when I started to feel a certain way, so I could paint an accurate picture.” This can help in getting a quicker diagnosis. “Doctors might want to say, ‘Wait and see,’ but you’d be able to say ‘No, here is what happened.’ Arm yourself with knowledge,” says Wilson. Blazer adds, “Any time that you have [skin] symptoms, take a picture, because those rashes may show up and eventually resolve. For patients, by the time they’re able to get an appointment with a physician, those symptoms might not be showing up.”
3. Find a Doctor You Trust
“Seek a doctor who understands you,” says Wilson. “Maybe they come from the same place you come from, or they understand melanated skin. If you can get a doctor or dermatologist of color, you may not go undiagnosed for as long.” Blazer agrees: “Patients of color tend to have better outcomes when they see physicians of color,” she says. “Physicians of color tend to communicate in a more culturally congruent way, so it helps with patients feeling heard. Because we don’t have enough rheumatologists of color, our patients tend to suffer.” A physician’s race isn’t the most important thing, though. “It doesn’t have to be a doctor of color, but find a doctor who listens,” Wilson says. “My doctor is not Black, but he was the first doctor to really listen to me.” When looking for a dermatologist or rheumatologist, be sure to ask about how they treat patients of color, Wilson suggests. “Just like they’re asking you questions, you need to be asking them questions. Ask, ‘Do you work with people of color? What’s the difference [in treatment]?’” If they say there’s no difference, “Then get up and leave.” This can make patients feel intimidated and clam up. “I don’t want to feel like a burden, and it would make me feel like going into my shell, but I had to retrain my mind,” says Wilson. “They don’t know your body more than you. I know that they can try to paint Black women as angry and aggressive, and sometimes in order to not feel like that, you act more subdued — but you’ll never be able to get things done for yourself if you don’t speak up.” At a recent physician’s visit, when Wilson felt her symptoms were getting dismissed, she asked to talk to someone higher up: “I said I want to speak to the head doctor.”
5. Ask All Your Questions About the Meds Your Doctor Prescribes
When one of her doctors misdiagnosed a peeling toenail as a nail fungus rather than a foot symptom of psoriatic arthritis, he prescribed a medication that worried Wilson. “He gave me an antifungal, but I knew they really affect your liver or kidneys, so I said, ‘I’m not taking these.’ I took one pill and said, ‘I’m going back to the doctor.’ This time I got another doctor, a woman of color, and she said, ‘With your history of psoriasis, I have a sneaky suspicion this is not a fungus. Don’t take these meds.’ She sent me to a dermatologist. He took the little bit of my toenail that I had left, and sent it to the lab.” “When I was covered [with rashes] and my brothers had passed away, I was working as a marketing manager at a shopping center. When I used to have anxiety, I would always run because it made me feel better.” But now her joint pain was making running difficult. “PsA kind of messed that up.” Wilson says she now does moderate exercise, and she has other strategies for coping with pain. “Journaling helps me to get out my emotions. Also meditation, and proper breathing. Sitting still and quieting your thoughts, just being in the moment.” Filtering the news is crucial too, says Wilson. “When BLM [Black Lives Matter] happened, I know we all wanted to tune in, but I felt if I can’t add to it, if I can’t be on the ground and do anything about it right now, I don’t want to be watching someone die on camera.” “My doctor said they’ll monitor it, and I said, ‘But when you see something show up, hasn’t damage been done already?’ It was as if she was irritated with me for asking. But I was like, ‘It’s my life.’” When Wilson asked about alternatives, “My doctor said ‘Oh yeah, your insurance does cover alternative therapies like acupuncture, water aerobics, physical therapy.” Wilson found some of those treatments helped with her symptoms. Wilson also suggests patients talk to their doctor about dietary options and keep a close eye on what foods trigger psoriatic arthritis symptoms, since there is no one-size-fits-all approach. “The thing about diet and nutrition is we don’t have good randomized control trials to say that one diet works better,” says Blazer. “But having PsA or another autoimmune condition does increase the risk of having cardiac disease later on, so a heart-healthy diet is important.”
