The Loneliness of Being a JRA Kid
All these years later even in middle age I think of myself as a JRA kid. Now juvenile rheumatoid arthritis has been renamed juvenile idiopathic arthritis, but I still identify with the JRA. It’s in my bones. And I can recognize others (although rare) in an instant. I like to think of us as unicorns—we’re unique, beautiful, and strong.
A rare and isolating condition for most
When I was a child, I didn’t know anyone else with JRA. We lived in the country and I had a rare disease. The closest Arthritis Foundation chapter was about an hour away and not many folks there even had rheumatoid arthritis. It was sort of like “so close, but still so far” that it wasn’t really helpful.
As I continue to date myself, it was also pre-internet. I didn’t have chat boards or websites, or even emails for connecting with other kids in my situation. It felt isolating.
I had plenty of friends and fun. I enjoyed learning. But a lot of times I felt like adults—particularly the medical professionals in my life (nurses, doctors, physical and occupational therapists, even phlebotomists)—understood me the best. These people knew I had a serious disease, that my condition was advancing aggressively, that my symptoms were debilitating. They spoke to me like equals about how I felt, my medications, my worries and questions. They didn’t have a lot of answers, but they understood.
Being mature beyond my years
Being a JRA kid meant a certain amount of being mature beyond my years. It meant understanding my rheumatoid arthritis, knowing my medications, doing my exercises, and living with serious chronic pain as a child. Yet I was still a kid. It was sort of a split-brain thing where I had to be an adult because of my condition, yet I was still immature. Let’s just say I wasn’t always perfect at doing what I should for my health.
For me, this maturity also meant that I didn’t always feel connected to other kids my age. I felt a distance in attitude. And with my physical disabilities even as a child, I couldn’t play the same way. I retreated to books and my imagination.
Despite being sick, I remember having a very happy childhood. But it was also disrupted with serious illness—flares that took away my ability to walk, pain that kept me up at night, procedures that didn’t always help, and infinite hours of tests and doctors’ appointments.
As much as I love my family and childhood friends, I also remember being a JRA kid as a lonely time. No one my age understood what it was like to be fighting rheumatoid arthritis. And no adult could understand what it was like to be a kid with a serious, life-altering chronic disease. It was a gap that could not be filled.
In the new era of the global Web and social media, I really hope this is not the case anymore for children with rheumatoid arthritis. I feel like these technologies can help to minimize the isolation of these children, just as new drug developments can hopefully minimize the effects of the disease.
I feel so glad and fulfilled to have the RheumatoidArthritis.net community—a place where I have connected and made new friends, including adults who had JRA. The loneliness I felt as a child has been alleviated by the shared experience and support of this community. It’s my deepest wish that no one with this disease shall ever have to feel alone in their journey again. While I can’t change the past, I am glad to be a part of this wonderful community now.
Have you shared tips on how to manage RA with anyone before?