How to Advocate for Yourself at the Dermatologist
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Many skin conditions are more than just a nuisance—they can lead to serious, even life-threatening health concerns. That's why getting a proper diagnosis is so important.
Take psoriasis. The chronic inflammatory disease causes itchy, scaly patches due to inflammation not just in the skin, but throughout the body. “If it’s not treated, all that background inflammation can lead to metabolic syndrome, a group of conditions that can raise the risk of diabetes, heart disease and stroke," explains Lloyd Miller, M.D., Vice President of Immunodermatology Disease Area Leader at the Janssen Pharmaceutical Companies of Johnson & Johnson.
But it's a troubling fact that people of color are more likely to have undiagnosed psoriasis—and receive lower rates of treatment for other skin conditions, like acne.
Why? For one thing, skin symptoms don’t look the same in every patient, yet doctors aren’t always trained about how skin conditions manifest in people of color. “Many of the visual characteristics that we are taught to look for when making a diagnosis—like redness, scale and swelling—can appear differently in patients with darker skin,” says Dr. Miller.
It's a pervasive problem: One survey found that nearly half of medical school residents said their medical training didn’t adequately prepare them to initially recognize skin conditions on Black skin. Another analysis found that just 4.5% of medical textbook images show diseases in darker skin.
To improve these healthcare disparities, providers need better education and training on diagnosing and treating people of color as well as addressing unconscious bias and providing culturally competent care. As part of Johnson & Johnson's Our Race to Health Equity initiative, which is focused on helping eliminate health disparities for people of color in the U.S., the company is working to help provide better treatment to people with Black and brown skin by addressing these types of systemic disadvantages.
For example, Determi-Nation is an initiative designed to gather research and uncover insights that reflect the unique experiences of communities of color navigating their journey with psoriatic disease. By convening experts, including healthcare professionals, patients and advocacy partners, the initiative focuses on how to help solve diagnosis challenges that exist for people of color in order to improve the patient and healthcare provider experience, and ultimately, improve health outcomes. Additional efforts at Janssen include diversifying clinical trials to better ensure that treatments are inclusive, equitable and effective for all racial and ethnic populations.
But no matter how many strides are being made to pave the way to more equitable healthcare, it’s always essential for patients to advocate for themselves and for their health. For National Healthy Skin Month, we explore how.
Find the Right Doctor for You
First of all, it can be extremely helpful to find a dermatologist who has experience treating the skin of patients of color.
"Find out what kind of, and how much, experience the doctor has with skin of color in dermatology," says dermatologist Lynn McKinley-Grant, M.D., immediate past president of the Skin of Color Society, Associate Professor of Dermatology at Howard University College of Medicine and member of Determi-Nation. As a Harvard Medical School student at the Albert Schweitzer Hospital in Gabon, Africa, she recognized the importance of detecting the early signs of systemic disease in darker skin types. "That will give you an idea of what type of experience they have in treating skin of color patients. Were they in a large city with a large population of people of color? Or were they in a part of the country where there are few people of color?"
When you arrive at your appointment, it's important to develop a rapport with the office staff and the doctor, stresses Dr. McKinley-Grant. "Consider your first impression of your doctor," she says. "They only get a few minutes with each patient, but ask yourself if the doctor is truly listening to you."
If you feel your doctor isn’t taking your concerns seriously or you think there is cultural bias that is preventing you from getting proper care, move on. One place to look for a dermatologist: the Skin of Color Society's Find a Doctor Database.
Get Comfortable With Bringing Up Your Symptoms
Being your own advocate starts with paying attention to your skin symptoms and communicating them to your doctor. But beware of diagnosing yourself, advises Dr. McKinley-Grant. "It can be to your disadvantage to go in and say, 'I have this condition.' Because if that’s not what you have, you could get the wrong treatment if the doctor doesn’t do any additional examination," she explains.
And being open about your symptoms also means detailing ones that might not necessarily seem like a big deal, or even related to your skin.
For example: Itchiness or pain associated with skin conditions can cause sleep disturbances, which can lead to increased disease flare-ups for people with atopic dermatitis (also known as eczema), which is the one of the most frequent inflammatory skin conditions to affect African Americans. “The immune system becomes hyperactive if you’re not sleeping, and patients can experience anxiety, stress and depression,” explains Dr. Miller. “Chronic itching really needs to be addressed because it creates a cycle of chronic insomnia and mental health issues that continuously worsens the skin disease burden and the patient's quality of life.”
A lack of trust of physicians, especially if it's someone who doesn’t look like you, is very difficult to overcome. As a treating physician, I felt the relief from my patients when they saw a Black doctor come into the room.ShareDid you like reading this story? Click the heart to show your love.
And this advice also—and perhaps especially—goes for symptoms that might seem difficult to bring up. Patients have reported that they have felt embarrassed by their skin conditions, such as psoriasis, atopic dermatitis or acne.
Hidradenitis suppurativa is a less-well known and extremely worrisome inflammatory skin disease that’s also underdiagnosed in patients with skin of color. People with this disease develop painful abscesses and lesions that can form pus-draining tunnels tracking underneath the skin that ultimately lead to permanent scarring. The disease typically shows up in skin folds such as in the armpits, groin and buttocks and it can create an odor.
“Half the time I’d see patients and say, ‘Why didn’t you come in earlier?’ and the response would be ‘I’m embarrassed,'” says surgeon Donald Cheatem, M.D., Ph.D., Senior Director and Product Development Clinical Lead at Janssen. By the time patients see a doctor and get diagnosed, he says, it’s often too late to avoid surgery to remove the deeply inflamed and scarred tissue.
It’s also important for patients to articulate not just skin issues but also more general symptoms, explains Dr. Miller. “This can sometimes prevent diseases from being missed.” Many dermatologic conditions have comorbidities, or other conditions that can occur at the same time. For example, psoriasis patients often have diabetes or other cardiovascular issues, along with higher levels of depression. Joint pain is also common, as psoriasis patients often also have psoriatic arthritis.
“Doctors don’t always ask about these comorbidities, but psoriasis is a systemic disease; it doesn’t just affect the skin, it affects the whole body,” says Dr. Miller. “Early diagnosis and treatment can help intervene and might help prevent the effects of chronic uncontrolled skin inflammation on internal organs such as the heart.”
And don't be afraid to push for more answers and more tests. “People need to say: ‘If I have a rash but you don’t know what it is, maybe it’s time for a skin biopsy,’” says Dr. Miller. An examination of a skin biopsy specimen under a microscope can often help with the diagnosis when a doctor is uncertain based on the physical findings alone.
Recruit Support to Help You Feel Heard
Going to the doctor can be a stressful and unsettling experience for Black and brown patients, who have historically been subjected to racial bias, discrimination and mistreatment by physicians, says Dr. Cheatem. “A lack of trust of physicians, especially if it's someone who doesn’t look like you, is very difficult to overcome,” he says. “As a treating physician, I felt the relief from my patients when they saw a Black doctor come into the room.”
Depending on your doctor's office's COVID-19 protocols, consider asking a trusted friend or family member to accompany you to facilitate conversations with your doctor, ask questions and help you get the care you need.
Not only will having a friend with you provide emotional support, but it can also help you keep track of what your doctor says, since retaining information can be hard in stressful situations. And if you can't bring a support person, Dr. McKinley-Grant recommends repeating back to your doctor what they’ve said to make sure you’ve heard and understood their feedback. And if you can, try to capture everything in writing so that you can review it when you get home.
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