Talking to others about your disease

Elizabeth has been drawing since she developed psoriatic arthritis at age 8.

"I started using it to convey how I felt, about that time I was diagnosed," said Elizabeth, who is 17 now. "It seemed like the most natural thing to do because I was always sitting down."

Her drawings have become an effective way for Elizabeth to let others know how she feels. Sometimes, they don't take her pain seriously because of her age and because her illness isn't obvious.

It can be tricky to talk to others about the challenges of a chronic illness like psoriasis and psoriatic arthritis, said Lisa Copen, founder of the nonprofit organization, Rest Ministries, which provides support and information for the chronically ill. Here are a few tips.

Consider your audience

Be selective about who you talk to about your disease and how much you share, Copen said, especially if you are in the process of trying a new diet or treatment.

"The first step is to really look at where you are at emotionally and what you are willing to share," Copen said. "When you bring it up, you open up a can of worms … you will get opinions, you'll get judgment, and you'll get advice. Instead of being motivated, you go into defensive mode."

Elizabeth, who blogs about her disease, is open about her psoriatic arthritis with adults. With kids, she'll bring it up as a joke at first, and then let them know she's being serious. Some friends know much more about her disease, and how it affects her, than others.

Be open about your limits

Elizabeth enjoys outings with friends, but must be clear about her limits. She limps because of psoriatic arthritis, so it's difficult to go on long walks in the park or at amusement parks.

Copen suggests focusing on what you can do, instead of what you can't do. For example, if a friend wants to go to the beach but your psoriatic arthritis makes it difficult for you to walk, offer to sit with them at the beach instead.

Return the favor

Don't be afraid to ask for help or for an opportunity to vent when times are rough, Copen said. But be sure to return the favor, especially when you are feeling better. Make a pot of chili for a sick friend, send a text to check in with family members and return your neighbor's wave from across the street.

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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