Stigma and psoriasis
From May/June 2005 Psoriasis Advance
At 33, Meghan Elizondo is all too familiar with the sting of stigma and psoriasis—she's lived with it most of her life. As a young child, she developed psoriasis on her scalp, and over time it spread to her ears, elbows, lower back, feet, ankles and face. At 24, she was diagnosed with psoriatic arthritis.
She's felt the stares, endured teasing and dealt with hairdressers who thought she had lice. Even now, Elizondo, who lives with her husband in San Jose, Calif., says she still gets insensitive remarks—"You're too young to have arthritis. You don't really have that."
The worst, though, was having psoriasis during her teen years. "As a teenager, you're so mortified by anything that makes you look different or weird," she says. "With dating, it was really embarrassing. I felt like a freak."
Research shows that people with psoriasis often experience stigma—social rejection or discrimination—usually due to misinformation and fear that the disease is contagious. Stigmatization can erode a person's self-esteem, emotional well-being and work life, leading to more stress—a known trigger for psoriasis.
A study published in the October 2002 British Journal of Dermatology showed that
psoriasis patients experience significantly more stigma than other dermatological patients. Social discrimination often occurs at the gym, school, hairdresser or on the job, according to the National Psoriasis Foundation 1998 Member Survey. Stigmatization can interfere with seeking professional help, can affect occupational life and lead to more alcohol consumption, say researchers.
Stephen Rapp, Ph.D., a clinical psychologist at North Carolina's Wake Forest University School of Medicine, studies how people adjust to skin disorders such as psoriasis.
According to Dr. Rapp, stigma has two major facets. The first involves a negative encounter—an actual episode of rejection or discrimination toward someone with psoriasis.
The second facet involves anticipating stigma in new encounters. "There certainly have been shocking accounts of people's reactions to severe psoriasis, and it doesn't take very many hurtful encounters to sensitize someone," he says. But it's important to remember that someone who appears to be staring may simply be noticing the psoriasis, and not necessarily judging it.
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| Learning to talk about psoriasis has been helpful for Vina Laurino, 39, a San Diego resident who has psoriatic arthritis and erythrodermic psoriasis—a particularly inflammatory form of the disease that affects her entire body surface. She, too, had difficulty as a teenager dealing with her psoriasis and went to school at times wearing a hood and dark glasses. "But as I grew older I was able to be more comfortable about it with myself and others," she says.
Now, if people stare at her bright red skin, she talks about the disease and hands out psoriasis information cards from the National Psoriasis Foundation. She feels less stigmatized when she can talk about it with people. "People are actually curious. They see right away that I have a problem with my skin and they ask about it." She offers the following advice for people who have psoriasis.
Get as much emotional support as possible from family and friends and/or a therapist.
Don't isolate yourself. "The people I have met who have psoriasis tend to be loners," she says.
Join or start an affiliated psoriasis/psoriatic arthritis support group through the
National Psoriasis Foundation.
Consider attending the National Psoriasis Foundation® 2005 National Conference.
Educate people about the disease by handing out psoriasis information cards available through the Foundation.
Talk, talk, talk about the disease. "Just keep trying and talk it out," she says. |
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Dr. Rapp and other researchers at Wake Forest University have studied why some individuals
seem to suffer more stigma than others. Some of it comes down to personality—people who are the most sensitive to how others view them are more likely to feel stigmatized, he says.
So how does stigma play out for someone with psoriasis? For Meghan Elizondo, it meant learning
early on to choose friends who wouldn't make cruel remarks about her or other people with physical problems. She also avoided wearing one of her favorite colors, black, because of her psoriasis flakes.
Stigma compels many people to conceal their psoriasis by covering their skin with long sleeves
and pants, even in the summer. They may become isolated and avoid social situations or going out in public. Some lash out at people who question them about their psoriasis, while others get depressed and angry.
Dr. Rapp uses cognitive behavioral therapy to help individuals become aware of what triggers their social anxiety and offers healthier strategies for dealing with others' reactions. Ignoring a negative remark is one tactic. Speaking out and educating others about the disease is another strategy that is especially effective in counteracting stigma, he says.
That has been the case for Elizondo, who has been explaining the disease to people much of her life. These days, Elizondo puts her speaking abilities to work as a volunteer for the Arthritis Foundation and the National Psoriasis Foundation. She travels to Washington, D.C., and Sacramento, Calif., to educate lawmakers about psoriasis and psoriatic arthritis, and push for more research funding. A National Psoriasis Foundation Member, she attended the Foundation's 2005 Capitol Hill Day.
The advocacy work has helped her feel more productive since she went on disability in 2001 and
was forced to quit working. She says she is empowered by speaking out.
"Once you start speaking out, people listen," she says. "When it's a lot of voices together, you can have an enormous impact."
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