How to Deal With the Stigma of Psoriasis
"Are you sure we should be intimate?"
"For many people -- myself included -- psoriasis can show up on your genitals," says Patrick H., 35, who has psoriatic arthritis (a form of arthritis that affects people who have psoriasis).
"That's embarrassing if you're about to get intimate with a new partner. You're already vulnerable, and they might assume you have a sexually transmitted disease," he says.
Still, he says, "It's absolutely the other person's business to know, since they are being intimate with you."
What you can say: Talking to a new partner about your psoriasis early in your relationship can make intimacy more comfortable, Nelligan says.
"You need to shower."
"Maybe the biggest stigma I've faced is when I have a psoriasis flare on my scalp or ears and people think I have dandruff or don't clean myself enough," Spivak says. "I've learned to check the mirror often, and I often have my wife check me for flakes, too."
"It can be really hurtful to have someone suggest you have a grooming problem, even when they mean well," Jacob says.
"Sometimes there's no preparing yourself for unkind words," Nelligan says.
What you can say: "If you're feeling really hurt or shocked, say, 'I'd like to tell you more but now's not a good time,'" Nelligan says. This short response can be enough to give you space, and let the other person know that they've overstepped in bringing it up.
"You'll just have to learn to live with it."
Psoriasis is common, but that doesn't mean every doctor is familiar with the disease. Research shows that many patients don't get adequate care from their doctors.
Jacob says, "If your doctor tells you, 'This is as good as you're going to get,' even though your symptoms are bothersome, painful, or cause you distress, see someone else." She says a dermatologist who has experience with newer treatments like biologics may be able to help.
"You may visit multiple physicians before finding someone who will work with you to find an option that offers relief, but it's worth it."
"The past decade has seen more advances for psoriasis than perhaps any other skin condition," Jacob says. "We don't have a cure, but we do have great options, so don't ever stop asking, ‘What are my choices?'"
Psoriasis.org offers a list of doctors who have experience treating psoriasis and psoriatic arthritis.