From essence.com
Alisha Bridges, 36, knows what it feels like to be treated differently because of how she looks. Since elementary school, Alisha has struggled with severe plaque psoriasis—a condition which causes raised, inflamed, scaly plaques that may be itchy or painful. When Alisha was young, plaque psoriasis covered 90 percent of her body, and the endless stares, giggles, and cruel comments from classmates made her feel self-conscious and isolated.
She opted out of sports like basketball because she didn’t want to wear tank tops and shorts that left her skin exposed. When she was cast in her high school play, the drama teacher singled her out and forbade her from using the makeup that everyone else was putting on.
“Oh no, that’s not for you,” Alisha was told. “I don’t know what’s going on with your skin.”
By middle school, Alisha wanted to cover up her body, and by high school, her mental health challenges began to rival her physical symptoms.
Plaque psoriasis can be stigmatizing, with one survey showing the disease carries about the same level of stigma as herpes. Many respondents also falsely believed it to be contagious.
Alisha recalls feeling judged by her peers, unattractive in school, and overwhelmed by the burden of trying to explain a chronic illness to others—one that even she didn’t fully understand. The anxiety created a vicious cycle because stress is a common trigger for plaque psoriasis flares.
The most detrimental reaction to her condition, however, came from those who she was expected to trust: her healthcare providers. Alisha experienced first-hand the lack of cultural competency displayed by too many healthcare professionals when it comes to diagnosing and treating psoriasis in people of colour—which led to delays in finding effective treatments.
Research has shown that dermatologists are less confident in diagnosing plaque psoriasis on darker skin. Medical schools, literature and case studies teach doctors to recognize the symptoms of the disease primarily on white skin, which typically appears as red patches with a flaky, silvery scale. Only 18 percent of images in dermatology textbooks showcase conditions on darker skin, which often presents with a more purple or brown color.
As a teen, Alisha began to experience symptoms of psoriatic arthritis, a type of arthritis that can be linked with psoriasis, that causes joint inflammation, in areas such as fingers and knees. Other parts of the body may also be affected, such as the areas where tendons and ligaments connect to bone. Collectively, plaque psoriasis and psoriatic arthritis are commonly referred to as psoriatic disease.
Black or other people of colour with psoriatic disease are more likely to be misdiagnosed or receive a delayed diagnosis, which can be detrimental. About 30 percent of patients with psoriasis go on to develop psoriatic arthritis, and treatment delays may result in permanent joint damage and greater disability.
“Some doctors misdiagnose psoriasis in Black people as other conditions, like eczema,” Alisha says. “As a result, we can go through a long cycle of debilitating and tragically preventable symptoms. This explains why people of colour with psoriatic disease experience lower quality of life.”
For all the doctor visits that consumed her childhood and young adulthood, Alisha says no one ever broached the subject of how the condition was affecting her emotionally. She only realized later that she was dealing with clinical anxiety and frequent panic attacks.
But in 2011, she was ready to let go of her shame and posted a metaphorical “goodbye” letter on her blog. In the letter, she committed to finally letting go of the part of herself that was ashamed to live due to her disease. She wrote, “I kill the part of me that hides… I kill the part of me that cries out… I kill the part of me that’s afraid of what people will think.”
Since writing that note, Alisha has become a full-time patient advocate working with organizations like the National Psoriasis Foundation and Janssen’s Determi-Nation initiative, which unites patients, advocates, and healthcare providers to address inequities in care for people of colour living with psoriatic disease. Alisha has become a vocal proponent of dealing with the physical and mental strains of psoriatic disease: “This is more than skin deep,” she says. “It really impacts your entire life.”
Alisha says a lack of cultural competency can impact treatment decisions, too. She recalls being prescribed a medicated shampoo for her scalp psoriasis that required her to wash her hair daily, which isn’t realistic for many Black women. Other doctors, she says, may have unconscious biases, which causes them to forgo prescribing or recommending more advanced biologic therapies.
Today, Alisha has been able to successfully manage her psoriatic disease in close partnership with a doctor that she trusts. She offers a few critical tips to help other Black women avoid the challenges she experienced on her long road to better health:
•See a specialist – A dermatologist and a rheumatologist can help you manage your psoriatic disease and find the right treatment plan for you. Alisha recommends checking out the Skin of Colour Society’s database of dermatologists who specialize in treating people of colour to find a doctor near you.
•Communicate your preferences – Make sure that your treatment plan works for you. Don’t be afraid to speak up during your appointment to ensure your preferences and needs are being heard.
•Ask about other treatment options – Biologics, for example, may be a potential treatment option for people with moderate to severe plaque psoriasis and psoriatic arthritis. Biologics use is 69 percent lower among Black patients compared to White patients living with moderate to severe psoriasis, so consider discussing biologics with your doctor to learn about your options.
•Monitor your treatment progression – If you have been prescribed a treatment and do not see any improvement within the expected timeframe, be sure to talk to your doctor about other options. Alisha’s experience serves as a pertinent example—despite her prolonged use of multiple other treatments, they proved ineffective for her skin. Later, she uncovered the reality that the effectiveness of numerous treatments in clinical trials for plaque psoriasis remains limited for women of colour.
https://www.essence.com/health-and-wellness/janssen-living-with-plaque-psoriasis/
