When you have psoriasis, you can get some pretty blunt, impolite questions and comments from people who don't understand. Luckily, there are some things you can say and do to feel better.
“It helps to have some quick and simple responses ready,” says Julie Nelligan, PhD, a psychologist and assistant professor at Oregon Health and Science University.
You might hear: “Is it contagious?”
“It's understandable that others don't want to catch something,” she says. “But it still hurts, because if your rash was contagious, of course you wouldn't expose others to it.”
Brittany Ineson of Queens, NY, understands why others might be cautious, especially when her psoriasis is really flaring. A doctor diagnosed her with severe plaque psoriasis that covered 90% of her body. She even had flare-ups on her palms and bottoms of her feet. And that can be alarming to someone who doesn’t know what it is.
What you can do:
When someone asks Jacob if her skin problem is contagious, she usually says, “No, I have psoriasis, which is a genetic condition. You can't catch it.”
Ineson gets a lot of stares, she says, but most people are more curious than mean. She often approaches the subject first and asks others if they’d like to know more about her red, flaky patches. This tactic works much better than getting nasty and lashing out, she says.
“I find that when I’m calm, they’re calm,” she says.
In an effort not to make others uncomfortable or anxious, she tries to hide her angry-looking outbreaks with clothes. She wears long sleeves in the summer. She realizes that people who have never seen psoriasis might be fearful of touching her, so she assures them that there’s no reason to be afraid.
You might hear: “What's the big deal? It's just a rash.”
Yes, psoriasis can be itchy and aggravating. But what many people don'trealize is that it's a serious health condition.
“I'm sometimes surprised when people act like it's 'just psoriasis,'" says Gary Spivak, who also has the common disorder. “It can lead to skin infections and scarring, and research even shows that it's linked to an increased risk of heart problems.”
What you can do:
You don't have to explain the seriousness to everyone. But if a friend, family member, or colleague asks, you could look at it as an opportunity to spread awareness, Jacob says.
Ineson also approaches it as a teaching moment. And a little humor never hurts. “If that was the case, [and it was just a rash,] I’d be lathered in cream,” she says.
You might hear: “Umm, I don’t want to touch you.”
Romantic relationships plus psoriasis can make for awkward moments. When it comes to dating, “people can be particularly unkind and surprisingly vain,” Ineson writes in her candid blog Seeing Pspots. Potential dates have rejected her because of how her skin looked.
Patrick H. says he’s felt self-conscious before getting intimate with a new partner, especially since you can have scaly patches on your genitals.
“You’re already vulnerable, and they might assume you have a sexually transmitted disease,” he says. “Still, it’s absolutely the other person’s business to know.”
What you can do:
It’s best to address the topic early on, Ineson says, so both people feel more at ease.
“It’s difficult to meet someone for the first time and explain a skin condition that can be a little disgusting maybe and a little off-putting,” she blogs. “I don’t let it get me down though ... Be confident and own your flaky, raw skin. They don’t like it? Maybe you could teach them a thing or two about what having ‘tough skin’ really means.”
You might hear: “Have you tried dandruff shampoo?”
Spivak says it’s happened to him. “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,” he says.
What you can do:
To get ahead of comments, Spivak says he pays extra attention to his appearance.
“I've learned to check the mirror often, and I often have my wife check me for flakes, too,” he says.
It’s OK, though, if you get caught off-guard by such a remark.
“Sometimes there’s no preparing yourself for unkind words,” Nelligan says.
If you do get caught by surprise, and don't feel like explaining, the best thing to do is buy yourself some space, she says. You can say, “I'd like to tell you more, but now's not a good time.”
You might hear: “You just have to learn to live with it.”
Know that this isn’t true. There is action you can take to tame your skin.
“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, know you have other options,” Jacobs says. Besides, not every doctor has experience treating psoriasis.
What you can do:
Press your doctor for more information. If they don't help, talk to another one. Try a dermatologist who offers newer treatments like biologics, Jacob says.
“You may visit multiple [doctors] before finding someone who will work with you to find an option that offers relief, but it's worth it,” she says.
“We don't have a cure, but we do have great options, so don't ever stop asking, ‘What are my choices?’” she says. “The past decade has seen more advances for psoriasis than perhaps any other skin condition.”
You can check out the Psoriasis Foundation’s web site, psoriasis.org, which has a list of reputable doctors. Plus, they have information on the latest psoriasis research.
When You Still Feel Bad
Even when you have a handful of go-to responses for uncomfortable situations, there will still be hard days.
Ineson remembers a little boy saying, “Mom, look at all her mosquito bites.” And another time, when her father second-guessed her getting into a hot tub for hygiene reasons.
It can really hurt when people avoid you and treat you “like you have the plague,” she says. Sometimes it helps to be up-front and just tell the person they hurt your feelings. An apology can go a long way.
If you can’t shake an upsetting remark, reach out and talk to someone, Nelligan says.
“It could be another person with psoriasis or a friend or family member who has another illness and really understands the wear and tear of having to explain yourself to others,” she says.
How to Explain Your Psoriasis in Different Settings
To help people understand what you’re going through, you’ll want to first take into account your relationship with them. Is it a nosy co-worker? A concerned friend? A first date or new partner? You can tailor what you say -- and how much you reveal -- to fit the situation.
At work. You can decide how much to tell your supervisor and co-workers depending on things like whether you’ll need time off for doctor appointments. You may want to keep it simple and professional, asking for any accommodations you need and sharing how you’ll make up the time or keep your work on track. Let them know that psoriasis affects your skin but isn’t contagious, so that they understand the condition better. You may also want to keep some lotion or moisturizer at your workspace so it’s handy throughout the day.
With family and friends. Let them know that you have a condition called psoriasis that affects your skin, and that it’s not catching. Depending on how close you feel to them, you may also want to let them know if you’re self-conscious or depressed about it. Confiding in others may help you feel more connected. And with family members, you may find that they also have psoriasis. Experts estimate that 35% of people with psoriasis have at least 1 family member who has the condition. So it may be something you have in common with them -- and you can help each other manage it.
On dates. It might feel awkward at first to talk about a health condition with someone you’re just getting to know. When you decide that you want to tell them about your psoriasis, you could keep it very simple, like “I have psoriasis, which affects my skin. It’s not contagious,” or add more about how it makes you feel or how you take care of it, if you feel like being more open. Your partner may have questions, and by being open about it, they’ll know that it’s OK for you to talk about it together.