Year after year campers, counselors and other volunteers return to the Arthritis Foundation’s Juvenile Arthritis Camps. What keeps them coming back is the almost magical circle of acceptance, connection, and fun the camps create. Within this circle counselors help kids both push their limits and develop the self-assurance to take a break when their bodies need it.
Joel Cencius, now 33 and living in Milwaukee, WI, sees the benefits from both sides. He first attended an Arthritis Foundation camp, Camp MASH (Make Arthritis Stop Hurting) in Wisconsin Dells, when he was 8. Diagnosed with polyarticular JA when he was about 4 years old, Cencius attended camp for eight summers until he aged out of the program at 17.
There are more than 50 JA camps around the country. Most are overnight camps, some are for the entire family, and a few are just for teens. Most camps allow kids to start when they’re 7 or 8 and have an upper age limit of 16 to 17.
As a JA Camp sponsor, biopharmaceutical company AbbVie, maker of Humira (adalimumab), helps make camp possible.
“AbbVie is committed to fostering positive experiences for children living with juvenile arthritis, and the camps offered by the Arthritis Foundation provide access to important resources for disease management and support. They also provide these children the valuable opportunity to meet and connect with others who may be navigating a similar journey living with their condition,” says Jim Salanty, vice president, U.S. Rheumatology, AbbVie.
Camp had such a positive impact on Cencius that he made a pact with some of the friends he made to return as counselors. All did, and Cencius has now spent 10 years as a volunteer staffer at Camp MASH, including seven years on the camp’s planning committee.
A Place to Belong
“Nobody at school ever had what I had. For my entire life, camp was the only time I could spend time with kids who had what I had,” Cencius says. “For that one week out of the year, you felt normal. I wanted to give back to the camp gave me so much as a kid, and I wanted the opportunity to have a positive influence on kids who are going through the sort of thing I did.”
Susan M. Zellner, who has volunteered as a counselor for the last three summers at Wisconsin’s Camp MASH, where she was also a long-time camper, agrees. “I remember the counselors who made a lasting impact on me. I wanted to give a similar experience to campers today,” she says. “For campers there is the feeling, maybe for the first time in their lives, that they are not alone.”
Zellner, who was diagnosed with juvenile rheumatoid arthritis, also called juvenile idiopathic arthritis (JIA), at age 8, is now 40 and living in Chicago. “I began my involvement with the Arthritis Foundation as a camper, and then I re-engaged with the organization in 2014 to volunteer as a counselor. My engagement has broadened since, including as a donor and volunteer with the Chicago chapter,” she says.
As a counselor, one of Zellner’s most fulfilling moments is when she sees campers, many of whom are returnees, reconnect with each other. “Sometimes, in the first day or so, there’s a little hesitation or shyness, but then you can almost see the ‘click’ between kids as they reform those bonds,” she says.
Cencius also stresses how meaningful it is to see kids make connections in a safe space. “My most rewarding experience as a counselor is seeing how a group of kids, some who know each other, and some who are brand new, can form such a strong bond in a few days. Camp provides an environment where they can let their guard down, where they can talk about their illness and ask questions of other people their own age who are going through what they’re going through.”
Camp is packed with activities, from horseback riding to hiking to swimming and arts and crafts, says Julie Butscher, the volunteer director of JA Camp in Estes Park, CO.
Butscher, who was involved with JA camp as a mom of two campers long before she took on her director role, stresses the independence and confidence these activities can help build. Her son and daughter, who both have JIA, began attending at age 8, and now will only agree to summer vacations that don’t overlap with JA Camp, she says.
“We want campers to have enough activities, so in a sense they’re pushed to know they can do a lot, but at the same time giving them the time and ability to say, ‘No, I can’t do that.’ That’s where the counselors step in a lot, to help kids learn to set their own limits,” she says. “Our counselors do a lot of talking with kids, not telling the child what they should do, but helping them come to the decision that’s best for them—that’s one of the strongest experiences kids get when they leave camp.”
Camp traditions add to the feeling of belonging. At Camp JA in Estes Park those include a hay ride and a “town night” of go-cart riding and other adventures.
At Camp MASH, kids look forward to their “off the hill” night, when they leave camp (which is on a hill) for a surprise activity in town.
“One of our best traditions is at closing ceremonies we all lock arms and sing Lean on Me,” says Cencius. “I remember one guy I met as an adult who had juvenile dermatomyositis, which is pretty rare. I told him about camp, he volunteered as counselor, and his first year he met three campers who had it; it blew his mind because he’d never met anyone else with it. That year we all locked arms to sing and he just broke down, because here was this amazing, incredible place he wished he’d known about when he was a kid.”
Campers also learn more about their arthritis, both in formal activities led by the medical teams that are available at every camp, and firsthand from their peers, a powerful experience for many, says Butscher.
“Last year our counselors-in-training [campers aged 14 or so and up can apply] talked to the other kids about their arthritis and how it’s affected them. One talked about why he’s an advocate, and one talked about bullying and feeling isolated and that that one thing that got her through it was talking to her camp friends,” she says. “Arthritis can be such an isolating disease, and to the kids, these camps feel like a place they are accepted. I think it’s the best thing the Arthritis Foundation does, and they have many amazing programs. The camps are life-changing for the campers and their families.”