For Colombian-born Carolina Mejia Peña, the symptoms started when she was 4-years-old, shortly after her family moved to New York. First, it was joint stiffness, which made it difficult for her to run and play. Then, came the pain, which eventually got so bad she couldn’t even walk or use her hands.
Panicked, her parents rushed her to the emergency room, but instead of answers, they were met with even more confusion. New to America, they didn’t speak English and without an interpreter on site, the language barrier made it impossible for them to understand. Fortunately, the hospital could refer them to a pediatric rheumatologist who spoke Spanish and would explain to them what was happening: their daughter had polyarticular Juvenile Idiopathic Arthritis (JIA).
A Spanish-speaking rheumatologist was an invaluable resource for the Mejia Peñas, but because of their doctor’s busy schedule, they weren’t always able to get an appointment with her. So, once Mejia Peña learned English, it was up to her to make sense of it all.
“When I was around 10 or 11, I essentially took over my appointments,” she says. “I asked as many questions as I could to my doctors and the nurses like, ‘Why are you poking me with this? What are all those tubes? What does this mean?’”
Mejia Peña also asked her doctors to explain her test results in detail. Not only so she could translate them to her parents, but also so she could understand them herself. If she couldn’t control what was happening to her body, she was at least determined to understand what was going on, she says.
Taking charge of her own care at an early age, paired with multiple hospital stays, sparked an interest in science and the human body that would shape Mejia Peña’s future. In fact, Mejia Peña, 22, is a first-year Ph.D. student in the Molecular Biology, Cell Biology and Biochemistry program at Brown University, and the first in her family to attend college.
“I think because I was genuinely interested in what was going on with my body, my doctors trusted me to be responsible when it came to keeping up with my medications and making my appointments,” she says.
For anyone, managing a chronic illness is a huge undertaking, but for Mejia Peña it was just another part of growing up. This responsibility became even more challenging when she left home at 13 to attend a prestigious boarding school for gifted students.
“My parents were incredibly worried, and rightfully so, because they were leaving their only child five hours away from them with an ill-managed chronic disease,” she says.
Their concerns were justified. On top of a rigorous school curriculum, and without a pediatric rheumatologist close by, Mejia Peña had to deal with finding the right medication, figuring out her limitations, and perhaps hardest of all, feeling that she had to keeping her condition to herself.
“It was isolating,” she says. “I felt like I had to keep it a secret because I thought my teachers might not expect as much of me, or I would have to tell someone because they were expecting me to do something that I really couldn’t do. It was a hard thing to balance.”
After years of dealing with her JIA alone, Mejia Peña sought camaraderie from those she felt would understand the most.
“I felt most comfortable talking to my friends struggling with mental illness because both mental and chronic illnesses have this stigma like, ‘I can’t see anything wrong with you, so why are you sad?’ or ‘Why can’t you go for a run?’” she explains. “But it’s kind of tough because if no one sees it, they don’t believe it.”
Until recently, Mejia Peña says she never met another person – let alone someone her age — who suffered from arthritis. She hopes to help remove some of the stigma and loneliness of having arthritis by volunteering with iPeer2Peer, an online mentorship program that provides support and educational resources for teens with rheumatic diseases. The program, which launches this fall, matches teens with trained mentors who can offer advice on disease management and coping with chronic illness.
“A lot of the underlying anxiety that I had with this condition was getting used to the idea that it’s not going away,” says Mejia Peña. “That’s incredibly difficult for anyone to wrap their mind around, let alone someone that’s going through puberty, going to school and going through everything else that the world throws at a teenager or a kid.”
Mejia Peña believes that iPeer2Peer will allow teens to have honest, “healthy and necessary” conversations about their experiences — something she wishes she had growing up. “Even if it’s just to rant one day about how much it hurts or how your medication isn’t working, just having someone who knows what it feels like and can really empathize with you — not just sympathize — I think that’s incredibly important. And I would be more than happy to be that person.”
To learn more about the Arthritis Foundation’s iPeer2Peer, visit http://www.kidsgetarthritistoo.org/resources/ipeer2peer.php.