Advocating for the arthritis community, says 27-year-old Stephanie Kwiecien, has restored the voice that bullying shut down.
“Advocacy is really important to me because it gave me back the voice I thought I’d lost,” says Kwiecien, who was diagnosed with juvenile rheumatoid arthritis (now known as juvenile idiopathic arthritis) when she was 18 months old. During her elementary and middle school years, Kwiecien’s peers were unfazed by her condition and her teachers were understanding. But high school was different.
Some classmates teased Kwiecien. “It all kind of happened in gym class. I limped, and I couldn’t run as fast as the others,” she says. “I got bullied a little because people didn’t understand that young people get arthritis; it wasn’t as easily accepted as it was when I was younger. I was no longer able to just share that I had arthritis.”
One teacher also had trouble understanding—and sympathizing with—the limitations posed by juvenile arthritis. “I had a class that was on the other side of the building from the class before it. I didn’t always make it to that class on time, and the teacher would give me a hard time about it even after I explained what was going on,” says Kwiecien.
Camp Dakota, the Arthritis Foundation’s JA Camp in La Pierre, Michigan, provided a place for her to make friends she could lean on.
“I found a group of people who understood what was going on, so we were able to talk to each other. When I had a bad day, they were always there. They might not have been right next to me, but they were always a phone call or an email away,” says Kwiecien. She was a camper for five years, a counselor for four and has returned to camp every year as a volunteer since aging out of those programs.
Kwiecien and a friend she met in her earliest days at JA Camp will be co-directors in summer 2019 at Camp Dakota.
Expanding Advocacy Work
Kwiecien got her first taste of advocating for the arthritis community in 10th grade, when she joined other volunteers and Arthritis Foundation staff in Washington, DC, to speak with legislators about her disease-related experiences and challenges.
Speaking out was empowering. It helped Kwiecien to become more confident and inspired her to step up her commitment to arthritis advocacy.
Her volunteer efforts for the Arthritis Foundation now include roles as chair of the Advocacy Committee for the state of Michigan, as well as that state’s first Platinum Ambassador.
“I’ve gone back to DC to advocate several times, and I attended the JA Conference in Indianapolis for the first time last year. I made fantastic connections with others my age,” she says. “I had so much fun and loved being part of such a wonderful experience.”
As a member of the JA conference planning committee with her peers, Kwiecien worked on ideas for educational sessions, speaker topics and fun nights out for conference attendees to get to know each other.
She finds time for advocacy around her demanding schedule as a loads planner for a transportation services company based in Bloomfield Hills, Michigan.
She hopes soon to find a job that leverages the degree she earned in political science at Wayne State University in Detroit. Her other pressing goal is to expand the arthritis advocacy community in Michigan.
“I want to build the [arthritis] community to help pass legislation that makes health care better. Advocacy allows me to share with other people that young people, like me, get arthritis, and that it’s not just an older person’s disease,” she says.
For those young people struggling with arthritis she has this advice. “Don’t give up. It may be hard, and it may take time, but you can reach your goal,” she says. “There are all kinds of support and resources the Arthritis Foundation has to offer. Even if you don’t have friends or family to support you, there are tons of people in the Arthritis Foundation community who will support and encourage you to reach for your goals.”
Author: Emily Delzell
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