Women and the heavy toll of psoriasis

| Amy Stork

The emotional and social effects of psoriasis and psoriatic arthritis cut a deeper path through women's social and emotional lives than men's, according to a recent National Psoriasis Foundation report.

The report, an analysis of survey data from nearly 5,000 patients, showed that 20 percent of women said psoriasis is a very large problem in their everyday lives, compared to 12 percent of men. Nearly 60 percent of women said psoriasis interferes with their capacity to enjoy life, compared to 52 percent of men.

Sociology and psychology experts say that's because psoriasis taps into complex realities about how women are perceived in society and how they perceive themselves.

Dr. Wendy Chapkis, director of the women and gender studies program at the University of Southern Maine and author of "Beauty Secrets: Women and the Politics of Appearance," says psoriasis stirs up a concern with appearance that underlies many women's lives.

"The pressure is so intense on women to appear attractive to others. So much of our capital in the world is based on our appearance," Chapkis said. "That's not just an emotional reality — that's a material reality."

She said studies have shown that women who are overweight or whose appearance differs from the norm have a harder time getting and keeping jobs regardless of competence, and are paid less.

Dealing with psoriasis can be particularly hard on young women, according to Dr. Julie Nelligan, a Portland, Oregon, psychologist who specializes in the emotional impact of chronic diseases.

"People under 40 are looking for their social group, their career, their mate," said Nelligan. "It's very important how other people perceive them. If their psoriasis is in a place that makes them uncomfortable, that can impair their confidence and ability to form the key relationships and activities that are the foundation for their lives."

Psoriasis 'always present'

The relationship between appearance and confidence for women living with psoriasis is complicated and sometimes confusing. Leigh Z., a 33-year-old San Diego, California, resident who was diagnosed at age 5, says psoriasis dominated her outlook for many years.

"It was always present. When I went shopping, when I went to a new school, in every sort of situation there was always the psoriasis. I didn't date at all in high school, and it wasn't until I had a boyfriend in college that I started coming out to my closest friends about psoriasis."

The disease appeared mostly on her elbows and knees then; now, she sees it mainly on her ankles, upper arms and, since pregnancy, on her fingernails.

Though she is more open about psoriasis now, and feels comfortable talking about it in person, Leigh identified herself for this article by her middle name only.

"It's ironic that I feel so comfortable in my own skin, yet I am not willing to expose myself nationally, to say, 'Here I am, I have psoriasis, look at me.' Even now, it is still something I am coming to grips with."

Leigh feels lucky to have found a treatment regimen (she uses coal tar ointment) that allows her to keep the disease from ruling her life. Now a busy mother and communications professional, keeping thoughts of psoriasis at bay helps her focus on other priorities.

"Otherwise, I would go crazy," she said.

Psychologist Nelligan said that finding a sense of control, as Leigh has, is essential to overcoming the feelings of anger, frustration, embarrassment and helplessness that hit female psoriasis patients harder than males.

"A lot of women don't feel they are as powerful a force in their own lives as men do. Men are taught from early on to figure out how to solve their problems and be on their own. Women don't grow up with the same sense of [controlling their own destiny]."

Self-acceptance is key

Nelligan says cognitive behavioral therapy is particularly useful in empowering women. The technique focuses on how patients perceive their own effectiveness in dealing with important issues in their lives, and on changing thought patterns that lead to helplessness and despair.

How a woman with psoriasis chooses to dress may be an example.

Given the importance of appearance to women's success and self-esteem, it's hardly a surprise that nearly half of the women surveyed said they alter their clothing choices to conceal psoriasis, compared with a third of men.

Hiding psoriasis may be a sign that a woman suffers from shame and embarrassment about her body, and feels she has no choice but to cover up. On the other hand, choosing flattering clothing that highlights other features could mean a woman has accepted her disease and is taking control by making choices that increase her confidence. That acceptance is at the core of emotional health for anyone with a chronic disease, Nelligan said. "Even if you are getting treatment, you still have the disease. You have to figure out how you are going to live your life anyway. If you don't accept that you have psoriasis or any other chronic illness, then you don't address it and it creates even more chaos in your life."

Brooklyn, New York, resident Patricia O'Shea was diagnosed with psoriasis 14 years ago at age 41. The disease was a huge blow to her self-esteem. Prominent psoriasis on her face and hands destroyed the flawless skin she had considered her best feature and left her feeling exposed and alienated.

"When this hit, I was extremely angry. I was a waitress and a swimming instructor. This ended both of those jobs," she said.

Finding NPF and eventually becoming a support group leader for the New York City area helped O'Shea come to terms with the disease and separate it from her identity as a woman.

"Before, I thought it was a punishment," she said. "Now I know it is just part of the package of Patricia O'Shea. If you can't accept that, then you don't get me."

Finding a supportive community, as O'Shea did, is critical in helping women see how their own emotional struggles with psoriasis are tied into larger social realities, says sociology professor Chapkis.

"The really painful piece is when we not only feel bad, but then we feel bad about feeling bad," she said. "It's damaging to feel this is our individual, personal, private failing rather than the effect of a society that makes clear to women that appearance absolutely determines how important we are. That's why it is so important for women to be in community with other women with the same challenges."


Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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