Many diseases show few visible signs, but psoriasis is not so respectful of your privacy. Because the disease attacks the skin and creates clearly visible lesions, people who live with it often endure rude comments, rejection, and discrimination by those who don't understand the condition.
"If psoriasis didn't manifest itself through the skin, it would be a different situation," says Anne Krolikowski, 35, of Milwaukee, Wis., the executive director of a national medical specialty association. "Because our society puts emphasis on beauty, it's difficult. In public situations, people sometimes blurt out things they regret."
The right strategies and support can help you to educate others about psoriasis, and they'll go a long way toward letting you enjoy your life.
What you can control: your reaction
When Victoria Gardner Nye was diagnosed with psoriasis in 1990 at the age of 17, the stigma she faced each day stung. "People talked; they said I had AIDS," she says. "They called me a leper and backed away. I cried because I didn't know how to deal with it. Now I just let them move away from me. It's their choice."
Unfortunately, Gardner Nye's college experiences are not isolated incidents and many people have similar daily brushes with ignorance.
"You can't control other people's behavior, but you can control your own reaction to them," says Rebecca Ross, PhD, a psychiatric mental health nurse practitioner at Oregon Health & Science University in Portland.
It's important not to take rude comments personally, according to Ross. "Insensitive behavior reflects the other person's mood and temperament, not who you are as a person," she says. "And try to remember that people are fallible. Most of us have unintentionally made insensitive comments and have regretted it terribly."
According to Rob Traister, a 40 year old from Front Royal, Va., who runs an online support group, deflecting the unwanted attention gets easier with time. "The longer you have it, the thickerpardon the punyour skin becomes," he says. "You learn to not let rude comments bother you so much. Don't get me wrong; it still bothers me after 20 years, but now I have an arsenal of replies."
If someone asks him about his psoriasis in an obnoxious way, he tends to respond sarcastically. (He once told a fellow commuter on the Washington, D.C., subway that his lesions were the result of anthrax poisoning.) But in other cases he explains the condition in terms most people can understand. "My immune system thinks I have a wound there," he says. "It's trying to heal that spot by overproducing skin cells. Your skin sheds every 28 days. Mine sheds every 4 to 7 days in those spots. That's why it gets scales and turns red."
Seek out support
While it can take time to build emotional defenses against hurtful comments, Ross recommends finding support to help lessen the pain. "Sometimes we need to seek validation from friends, family, support groups, or a counselor to decrease the effects of the behavior of uninformed people," she says.
In college, Gardner Nye found support in a friend who lived in her dorm hall; he taught her to laugh off people's comments. "I credit him with my sense of humor about my disease," she says. "Someone can make fun of me and I can laugh it off, but other days, if someone does the same thing, I'll cry. I definitely take it day by day."
To cover up or not cover up?
Some people with psoriasisespecially the newly diagnosedprefer to cover lesions on their arms and legs by wearing long-sleeve shirts and pants year-round. In fact, a survey done by the National Psoriasis Foundation (NPF) found that 40% of people living with the condition concealed it with clothes. But that strategy can be uncomfortable in areas with particularly hot summers, and some people experience psoriasis on parts of the body (the face, hands, or head) that are difficult to hide.
"I live for the warm weather and I can't imagine wearing long sleeves and jeans in the summer," says Krolikowski, who was diagnosed with psoriasis at the age of 4. "This is just my personal experience, but if you are self-conscious and go to great lengths to cover it up, people are going to notice. Sometimes you're better off just dressing like everyone else. But it definitely depends on how severe your psoriasis is and what you're comfortable with."
Despite having had psoriasis for 20 years, Traister still covers up in certain situations. "When I meet a client for the first time, I wear a long-sleeve shirt and pants because I don't want to distract them from the work at hand," he says. "While you hope people won't be biased, they sometimes are."
How to educate others
Whether you're blindsided by a stranger in the grocery store or just befriending a coworker at the office, the question is bound to come up: "What's that on your arm?" In fact, over 25% of people with psoriasis say they explain their condition to other people one to three times per week. Educating people about the disease can greatly reduce stigma and increase understandingthat is, if people will listen.
"Sometimes you just know when someone is willing to listen," says Gardner Nye. "When people are staring at me, sometimes I just say that I have psoriasis. If they want to engage in a conversation about that, great. But I'm not going to force them."
If you catch someone staring or they ask about it in a rude manner, Ross recommends a casual and confident approach. "Be direct and say, 'I've noticed that you are looking at these psoriasis patches on my arms. If you're interested, I can tell you more about them.' This gives the person the option to learn about psoriasis, yet saves the person with the condition from explaining it to those who aren't interested."
Kolikowski prefers not to get too technical and keeps it simple. "I say, 'It's psoriasis, a noncontagious skin disease.'"
Dealing with discrimination
Public swimming pools and workplaces are common locations to encounter prejudice, but in some cases the law may protect you from outright discrimination.
One-quarter of people living with psoriasis have been asked to leave a swimming pool, according to the NPF. Traister is one of them. "In a public pool, people always stare at you," he says. "One time, a lifeguard said I had to get out of the pool. I just said, 'It's psoriasis. It's not contagious. I'm not bleeding.'"
The Americans with Disabilities Act may protect men and women with psoriasis from discrimination in the workplace. If your condition prevents you from doing your job and qualifies as a "disability" under the law, an employer must make reasonable accommodations for you (though there are some exceptions).
If you experience discrimination in the workplace, you should talk to your employer immediately, according to Allan F. Chino, PhD, a psychologist in private practice with Functional Pain Solutions in Tigard, Ore., and an assistant clinical professor of medicine at Oregon Health & Science University in Portland. "Any conscientious employer has to address that," he says. "It's in the employer's best interest to listen to the employee's complaints and rectify them, since that will create a healthier workplace for everyone. And if he doesn't, he could be sued."