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 global monkeypox outbreak.
As a result, some people with skin differences say they have started covering themselves with sweatshirts and gloves, even in hot weather, or have stopped going outside as often.
This summer, Jacqueline Nguyen, 21, who has eczema, boarded a Spirit Airlines plane in Los Angeles, but shortly before take-off, Nguyen was asked to get off the plane and questioned about their skin.
After Nguyen explained that 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 just existed in the skin I have, which I wear every day, and I was treated like a problem,” Nguyen said.
Nguyen now divides their hair differently to cover up eczema on their scalp and face, and wears long sleeves to leave the house, or doesn’t go out at all during a flare-up.
According to the American Academy of Dermatology, an estimated 84 million people are living with a skin condition. 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 adult U.S. population and can cause silvery and scaly raised red patches with well-defined edges, especially on the elbows, knees and scalp.
In 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 increased medical anxiety in general, which may explain the extra scrutiny of people with skin conditions. A recent national survey by the Annenberg Public Policy Center found that nearly 1 in 5 Americans were concerned about contracting monkeypox, but little understood it.
Mark Schaller, a psychology professor at the University of British Columbia, said health anxiety can exacerbate prejudice against people who look different. His research also found that a higher perceived threat of infection correlated with a more biased attitude toward immigrants, obese people and the elderly. He has also found that when people feel more vulnerable to illness, they report having less contact with people with disabilities.
“Over the past three years, people have thought a lot about illness because it was on the news a lot,” Schaller said. “If people are more concerned about illness, they express more prejudices about people with physical disabilities.”
Kate Riggle, 41, has psoriasis and after the monkeypox outbreak, she received daily complaints from customers at work. She works at a deli in her hometown of Hibbing, Minnesota, helping with food preparation and as a cashier.
“I’ve heard people complain that they don’t even want me to touch their money,” she said. “Even if my psoriasis is on my elbow.”
Lilly Simon, 33, of Brooklyn, said she understands people’s insecurity when they see the bumps caused by her neurofibromatosis 1, a genetic condition that causes benign tumors to grow on nerve endings and cause small bumps all over the body. But, she said, it doesn’t justify rude behavior or abuse.
This summer, Simon was unknowingly filmed by a stranger on her commute. The video was then posted to TikTok featuring a monkey emoji and a question mark. The video went viral, with many comments accusing Simon of having and spreading monkey pox.
When Simon saw the post a few days later, she was shocked. “My heart stopped a little,” she said. “All those old feelings came up. The old feelings of feeling that I have to cover it up.”
Simon quickly posted a response video to raise awareness about her condition, explaining that she has been bullied about her skin in the past and has sought therapy to deal with it.
It’s unclear whether people with skin conditions such as psoriasis and eczema are more at risk of getting monkeypox if they come into contact with them. But the chances of getting monkeypox from regular activities remain low, said Freeman, the dermatologist at Massachusetts General Hospital.
Freeman advises her patients to take the same precautions as the general population: get vaccinated if they belong to a high-risk group and avoid contact with anyone who has monkey pox.
What you need to know about monkeypox symptoms, treatments, and protection?
Freeman stressed that anyone in a monkey pox risk group who also has a… condition that affects the skin barrier should get the Jynneos vaccine, which is FDA-approved specifically for monkeypox. The older generation smallpox vaccine, ACAM2000, carries a risk of serious side effects for people with certain skin conditions.
A person with eczema who catches monkeypox may develop a more serious illness because the disease can spread more easily from one part 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, noticed anything unusual on their own skin, she encouraged them to see a dermatologist.
As for those people who scrutinize and harass people with skin condition? Leave the diagnosis to a professional, she said.
“There are many other skin conditions in the world, and we shouldn’t just assume that everyone who looks different has monkey pox,” Dommasch said.