Feeling Alone in Living with Psoriasis? Here’s What to Do
Managing psoriasis requires a lot more than the treatments you’re prescribed by your doctor. A good support system is crucial—especially if the condition impacts your mental health or otherwise interferes with your activities.
“Numerous studies have shown that patients with psoriasis suffer from quality-of-life changes because of their skin disease,” says Seemal R. Desai, M.D., a board-certified dermatologist in Plano, Texas. “Many have a sense of hopelessness, and the chronic nature of the disease can lead to lack of sleep, depression, and other symptoms. In addition, patients often feel like their psoriasis can affect their work environment and interpersonal relationships.”
Those same studies show that social support can improve quality of life for people with psoriasis; but finding that support isn’t always easy. In fact, in a recent poll, we asked: “Who supports you most in living with psoriasis?" The second-highest response—given by 27 percent of people who responded—was: "I don't have support."
If you can relate to this, there are things you can do to build a strong support system to help you through the tough stuff. The experts agree that the most important steps you can take involve education and networking.
If Your Friends and Family Just Don’t Get It
Desai says he often finds that people who don’t have a chronic skin disease like psoriasis simply don’t understand how it can affect a person and how devastating it can be.
In fact, one of the big issues with psoriasis—and why people might feel that they’re going it alone—is a misunderstanding on the part of the observer. “Many people who don’t have psoriasis have very little knowledge of the condition, and often think that psoriasis is infectious, contagious, or a sign of poor hygiene,” says Evan Rieder, M.D., a board-certified dermatologist and psychiatrist at NYU Langone Health in New York City.
So, while your parent, sibling, or friend might not be able to relate to the challenges of living with psoriasis, you can help them understand what it is, how it affects the way your skin feels and your mental health, and the psoriasis treatments that are available.
“Having that discussion and explaining things in simple terms is critical to helping someone else better understand what it can be like to live with psoriasis,” Desai explains. You’ll likely find that having people in your close network who understand the condition and support you unconditionally can be invaluable.
Start by sharing our infographic on psoriasis basics. Organizations like the National Psoriasis Foundation, Skin of Color Society and American Academy of Dermatology offer education, resources and support for people with psoriasis, too. Rieder suggests sharing unbiased, objective scientific information with family and friends—the more they know, the better equipped they’ll be to support you.
If You’re New to Your Area
Moving to a new city or town can mean leaving a support system behind; but, joining a local psoriasis support group can make the transition easier. “To know that you are not living alone with psoriasis and its associated comorbidities can be very strengthening for people who feel alone,” Rieder says. “Often, it's easiest to make connections with others who are living with psoriasis, which can help build confidence.”
See if there’s a support group available at a local hospital or if your dermatologist can recommend one.
Also, when you’re meeting people in your new town or city who don’t have psoriasis, it’s a good idea to acknowledge and verbalize the presence of psoriasis on your skin, according to Rieder.
“This can be helpful when you see someone else looking at your skin, or worse, staring at it in disgust,” he explains. “Information can be shared quickly, misconceptions debunked, and the subject changed to the real purpose of the interaction—making personal connections.”
If You Have a Tough Time in Social Situations
First of all, you’re not alone. Almost two-thirds (65 percent) of people who took a recent survey said their psoriasis or psoriatic arthritis interferes with their social activities and relationships. Many of them said they experience feelings of isolation and anxiety over social interactions because they feel self-conscious.
But panicking at the thought of putting yourself out there doesn’t mean you can’t find yourself a great support network. Desai suggests joining virtual skin-disease support groups, like our psoriasis community. There may be a local group that communicates online, too. “There are large ones in several metropolitan and geographic areas around the country for psoriasis,” he says.
Like psoriasis itself, it’s not a “one size fits all” situation. You might need to try out a few groups before you find one that feels right. And that’s absolutely fine. In fact, you might find that the more support you have, the better.
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