People with chronic skin conditions say they’ve grown accustomed to stares and questions about their appearance, but the harassment and stigma have gotten worse during the worldwide outbreak of monkeypox.
As a result, some people with skin differences say they have started to cover up with sweatshirts and gloves, even in warm weather, or have stopped going out as often.
This summer, Jacqueline Nguyen, 21, who has eczema, boarded a Spirit Airlines plane in Los Angeles, but shortly before takeoff, Nguyen was asked to leave the plane and questioned about their skin.
After Nguyen explained it was eczema, the airline asked for proof. Nguyen was only allowed back on the plane after producing a bottle of eczema cream. Nguyen called the experience “embarrassing” and a “nightmare,” and posted videos on their TikTok about the incident. Spirit Airlines did not respond to requests for comment.
“I was just existing in the skin that I have, that I wear every day and I got treated like a problem,” Nguyen said.
Nguyen now parts their hair differently to try to cover up eczema on their scalp and face, and wears long sleeves to leave the house, or avoids going out altogether during a flare-up.
An estimated 84 million people live with some sort of skin condition, according to the American Academy of Dermatology. Eczema, an inflammatory skin condition that can cause itchy patches of red, crusty and sometimes oozing skin, affects about 30 million people in the United States. Psoriasis, an autoimmune disease, affects about 3 percent of the U.S. adult population and can create silver and scaly raised red patches with well-defined edges, particularly on the elbows, knees and scalp.
By contrast, monkeypox tends to present as pus- or fluid-filled bumps that are often painful, said Esther Freeman, a dermatologist at Massachusetts General Hospital and member of the American Academy of Dermatology’s ad hoc monkeypox task force.
Psychologists say the pandemic has heightened medical anxiety, in general, which may explain the added scrutiny of people with skin conditions. A recent national survey from the Annenberg Public Policy Center showed nearly 1 in 5 Americans were concerned about contracting monkeypox, but understood little about it.
Mark Schaller, a psychology professor at the University of British Columbia, said health fears can exacerbate prejudices toward those who look different. His research has also found that a higher perceived threat of infection correlated with more prejudiced attitudes toward immigrants, people who are obese and the elderly. He has also found that when people feel more vulnerable to disease, they reported having less contact with people who have disabilities.
“In the last three years, disease has been on people’s mind a lot because it’s been on the news a lot,” Schaller said. “When people are more concerned about disease, they express more prejudice against people with physical disabilities.”
Kate Riggle, 41, has psoriasis, and after the monkeypox outbreak, she started getting daily complaints from customers at her job. She works at a deli in her hometown of Hibbing, Minn., where she helps prepare food and works as a cashier.
“I’ve had people complain that they don’t even want me touching their money,” she said. “Even if my psoriasis is on my elbow.”
Lilly Simon, 33, of Brooklyn, said she understands people’s uncertainty when they see the bumps caused by her neurofibromatosis 1, a genetic condition that causes benign tumors to grow at nerve endings and creates small bumps all over the body. But, she said, that doesn’t justify rude behavior or mistreatment.
This summer, Simon was unknowingly filmed by a stranger on her commute to work. The video was then posted to TikTok with a monkey emoji and a question mark. The video went viral, with many comments accusing Simon of having and spreading monkeypox.
When Simon saw the post a few days later, she was horrified. “My heart kind of stopped,” she said. “All those old feelings came up. The old feelings of feeling like I have to cover up.”
Simon quickly posted a response video to raise awareness about her condition, explaining that she was bullied over her skin in the past and has sought therapy to cope.
It’s unclear whether people with skin conditions such as psoriasis and eczema are more at risk of catching monkeypox if they come into contact with it. But the chances of catching monkeypox from regular activities remain low, said Freeman, the Massachusetts General Hospital dermatologist.
Freeman is advising her patients to follow the same precautions as the general population: to get vaccinated if they are in a high-risk group and to avoid contact with anyone who has monkeypox.
What to know about monkeypox symptoms, treatments and protection
Freeman stressed that anyone in a high-risk group for monkeypox who also has a condition that compromises the skin barrier should receive the Jynneos vaccine, which was specifically approved by the FDA for monkeypox. The older-generation smallpox vaccine, ACAM2000, carries a risk of severe side effects for people with certain skin conditions.
A person with eczema who contracts monkeypox could be at risk for more severe disease because the disease can spread more easily from one area of their body to another, said Erica Dommasch, a dermatologist at Beth Israel Deaconess Medical Center in Boston.
If someone, with or without a chronic skin condition, notices something unusual on their own skin, she encouraged them to consult with a dermatologist.
As for those people who are scrutinizing and harassing people with skin conditions? Leave the diagnosis to a professional, she said.
“There are a lot of other skin conditions that exist in the world, and we shouldn’t just assume that everyone who looks different has monkeypox,” Dommasch said.