4 People Share Their Psoriatic Arthritis Life Lessons

Being diagnosed with psoriatic arthritis can drastically change the way you live your life and how you feel in your mind and body. The chronic health condition leads to really stiff, painful joints, so whether you’ve dealt with the symptoms for years or recently received a diagnosis, simply taking care of yourself can feel like a constant struggle.

Although your health care team can give you valuable advice on how to manage your pain, only people who have psoriatic arthritis can truly understand the nuances of the condition—after all, they’ve already experienced the ups and downs of managing flare-ups and learned valuable lessons along the way.

So, SELF spoke to four people who have psoriatic arthritis to dig into the most important things they’ve learned since their initial diagnosis. Keep reading for their insight on pain management, coping with mental health struggles, and embracing change.

1. Slow down when you need to.

Trying to do seemingly mindless tasks, like gripping a zipper or brushing your teeth, can be more difficult than you expect when your joints are especially stiff and painful. Jocelyn Hall, 36, who was diagnosed with psoriatic arthritis eight years ago, says she’s learned to give herself extra time in bed to mentally and physically prepare for the day. And she encourages anyone else with the condition to allow themselves that grace if their schedule allows for it.

Hall says her psoriatic arthritis symptoms usually feel the worst during the first 10 minutes after she wakes up. “It’s like walking through mud or like you’re running in water,” she tells SELF.

That’s why she welcomes a slower pace. “I’ll sit up and read the news, and hopefully my boyfriend will bring me coffee,” Hall says. “I give myself those extra minutes in bed to rest and to get my mind going.” Once she’s ready to start her day, she takes a shower to help relax her stiff muscles.

2. Give yourself permission to set new goals.

It’s not always easy to live your life exactly as you did before a psoriatic arthritis diagnosis—but sometimes navigating all the new changes opens doors you’d never even consider.

Ashley Krivohlavek, 37, who was diagnosed with psoriatic arthritis in 2013, originally wanted to use her master’s degree in museum studies to work on exhibitions. However, her symptoms can get in the way when it comes to hands-on work. “When you are working in a museum, sometimes you do have to lift heavy things—and that is not something that could be in my job description,” Krivohlavek tells SELF.

While Krivohlavek tried to come to terms with what this meant for her future, she found valuable information and support through CreakyJoints, an advocacy organization for people with arthritis and rheumatic disease. She began volunteering with the group and sharing her own psoriatic arthritis story through the website. Through her experience, Krivohlavek found a new passion for health advocacy and decided to go back to school to study population health.