CLEVELAND — Many people might think of arthritis as an “old person’s disease,” but more than 300,000 children in the U.S. are living with juvenile arthritis (JIA), a chronic condition that can cause inflammation and debilitating pain. It also has no cure.
“You wake up every day with pain,” Taylor Lucas, a 19-year-old living with the condition, said. “It’s a chronic disability, and knowing that I couldn’t really define it or explain it to my parents, or specifically to my doctors, exactly how I was feeling was a very difficult thing to do.”
With July being Juvenile Arthritis Awareness month, Lucas said she wanted to share her story in the hopes of helping others.
She was first diagnosed with juvenile arthritis at just six years old, a time when she said she was too young to understand how other people defined pain.
Beyond the physical pain she needed to manage, Lucas said the emotional toll of not being understood by other kids weighed on her. But being a part of the Arthritis Foundation helped her feel less alone.
“There are some things we can do, and other things we may feel limited by, but we are ‘Champions of Yes,’ and we really truly can do anything when we’re supported and can feel like we’re included in that group,” Lucas said.
She said she has never let her arthritis define her or stop her from doing anything she’s set her mind to. She calls herself and others living with the disability “Champions of Yes.”
That means rather than not doing something at all, you find a way to modify it to work for your body.
She said one of the things she enjoys doing most is playing tennis with her mom.
“I feel like it really represents my journey thus far and how every time, with everything coming at me, I’m able to hit back stronger than ever,” she said. “And I think tennis really symbolizes that for me.”
For Lucas, the disease moved from her feet all the way up her body to her jaw.
She said for at least four years the arthritis caused her jaw to deteriorate, making it so she could only open her mouth one millimeter. She spent that time consuming all her food in the form of protein shakes and other liquids.
“That was arthritis’s doing, is that, it made me feel ashamed to have such a deteriorating disability that was very invisible until it wasn’t,” she said.
After sitting on a waitlist for years, Lucas was finally able to get surgery on her jaw in 2019. It’s not uncommon for people like her to wait years to get access to treatment.
According to data from the Arthritis Foundation, only 25% of children with juvenile arthritis have access to a pediatric rheumatologist, and they must travel an average of 57 miles to reach one.
Lucas said if there’s one message she’d send to kids first being diagnosed, it’s to keep moving despite the pain.
“You are not alone,” she said. “You are a ‘Champion of Yes,’ and you will come out of this stronger than before.”
The Arthritis Foundation’s annual “Walk to Cure Arthritis” is Sunday, Sept. 24 at the Cleveland Metroparks Zoo. You can find more information here.
