This autoimmune disease manifests as scaly, red, itchy, and even painful raised skin patches known as plaques. Plaques most commonly appear on the elbows, legs, and scalp but can show up on other areas as well. Unfortunately, many myths about the condition persist, which can make it difficult for people who have psoriasis to receive the support they need from friends and family. Here’s what people who have psoriasis want you to know about living with the condition.
1. You can touch me — you won’t catch psoriasis!
Psoriasis is an autoimmune disease. It is not caused by bacteria, parasites, or anything else that can be transmitted from person to person. “There is absolutely not a shred of evidence to suggest that this is a contagious disorder in any way,” says Jonathan I. Silverberg, MD, PhD, MPH, an associate professor of dermatology, medical social sciences, and preventive medicine at Northwestern University in Chicago. Unfortunately, many people don’t know that they can’t catch psoriasis from someone else. “It’s almost like people think you have cooties,” says Rochelle Magno, 43, who has psoriasis on her scalp. In a study published in the Journal of the American Academy of Dermatology in June 2019, about 39 percent of study participants did not want to shake hands with someone with psoriasis, and about 27 percent thought the disease was contagious.
2. Psoriasis isn’t just a cosmetic issue. It can make skin itchy and painful.
Sometimes psoriasis plaques look better than they feel. “Psoriasis is not simply a cosmetic disease or an aesthetic disease, but it’s a disease that comes with, in many patients, intense itch, skin pain, and other much broader impacts than just what some might say is just a little ugly-looking red skin,” says Dr. Silverberg. Magno has had to leave events because her plaques were so itchy and inflamed that she couldn’t stand it anymore. She couldn’t concentrate on what was happening around her. “It’s like getting a bug bite, like a mosquito bite, but worse,” she says. “You’re scratching that area, and there’s no relief, and you just want to keep scratching to find some form of relief, but you don’t.” Scratching can actually worsen psoriasis by triggering the Koebner phenomenon, a reaction that causes new psoriasis lesions to develop at the site of a skin injury or infection. This may happen because scratching can cause breaks in the skin, flaking, and bleeding that can make your symptoms worse, according to the NPF.
3. Psoriasis increases your risk of several other health problems.
Psoriasis can be a sign of systemic inflammation, and people with psoriasis have an increased risk of autoimmune diseases such as psoriatic arthritis, rheumatoid arthritis, and ankylosing spondylitis, says Silverberg. The most common systemic disease associated with psoriasis is psoriatic arthritis, which causes joint pain and inflammation. Psoriatic arthritis affects about 19.5 percent of psoriasis patients in North America, according to a study published in the Journal of the American Academy of Dermatology in January 2019. Research also suggests that people with psoriasis may have an elevated risk of cardiometabolic disease, which includes components such as high blood pressure, diabetes, obesity, and heart disease, says Silverberg. It’s especially important for people with psoriasis to stay on top of age-appropriate physical exams and screenings with their primary care doctors. “Let your primary care doctor or dermatologist know about any new-onset joint pain or other issues that come up,” says Silverberg.
4. Psoriasis often takes an emotional toll.
This disease can make people uncomfortable in their own skin. Results of a survey published in May 2018 in the Journal of the European Academy of Dermatology and Venereology showed that 84 percent of people with psoriasis said they had experienced discrimination or humiliation due to psoriasis. Many also reported negative effects on work, intimate relationships, sleep, and mental health. Sometimes it can be emotionally exhausting for patients to be identified by their disease wherever they go. “We always say to patients, you have psoriasis, but you shouldn’t be defined by your psoriasis,” says Silverberg.
5. I have psoriasis, not a hygiene problem.
Some people wrongly assume that psoriasis has something to do with cleanliness, or a lack of it. In a study published in the Journal of the European Academy of Dermatology and Venereology in March 2015, about 7 percent of people surveyed thought that psoriasis is related to personal hygiene, and about 3 percent believed that psoriasis affected more people with low personal hygiene. “A lot of times, people think I haven’t washed my hair,” says Magno, who has plaques on her scalp and ears. In fact, her psoriasis often looks its worst right after a shower.
6. Because of psoriasis, I can’t do some things I used to do.
Rebekah Jensen, 37, has psoriasis that affects the folds of her skin, including those in the genital area. This makes wearing certain types of underwear, including thongs, very uncomfortable. “I’ve pretty much given up on sexy underwear because it just irritates it and makes it worse,” she says. Jensen has also cut back on another sartorial habit: “Wearing dark tops, where the flakes from psoriasis fall down and people are wiping off the flakes on your shoulders,” she says. “That can be embarrassing.” Magno avoids having her hair washed at the salon. “That’s just not an option for me because the chemicals they use irritate my psoriasis even more,” she says.
7. I might wear long pants or long sleeves, even in the summer.
Some people cover up the areas of their skin affected most by psoriasis. “While each person’s experience living with psoriasis is quite different, many of my patients discuss with me the shame and embarrassment they experience related to their psoriasis,” says Megan H. Noe, MD, MPH, MSCE, an instructor in the department of dermatology at Brigham and Women’s Hospital in Boston. “I have patients who are not bothered by their plaques, but I have other patients who choose clothing that will cover their plaques and avoid swimming or other activities where their skin will be exposed.”
8. Don’t assume I’m neglecting my psoriasis just because it looks bad to you.
“Patients are sometimes asked: ‘Have you seen a doctor?’” says Silverberg. In fact, it’s very possible that they have seen multiple physicians and tried multiple treatments but still have noticeable plaques. Very severe cases of psoriasis are difficult to control. Even if a treatment works for a while, it doesn’t mean that the relief will last forever. Jensen says some stubborn spots require lots of daily attention, and she’s always hoping to find something that will completely cure it. “It’s just something that you will always have to stay on top of, to be honest, because it’s an autoimmune condition,” she says. “You don’t know what medicine is going to work. One thing may work for someone but doesn’t work for me, or vice versa.”
9. The cream that soothes your dry skin isn’t going to magically fix my psoriasis.
Many people with psoriasis receive unsolicited advice about their skin or product recommendations from friends or even strangers. “Everyone always has the answers, and I tell them, that’s not going to work for me,” says Magno. The products peddled by friends are not a substitute for advice from a dermatologist who specializes in treating skin disorders. “Sometimes family members or caregivers mean well, but they don’t know the difference between psoriasis and some other skin condition,” says. Silverberg. The wrong product could make psoriasis worse, he adds.
