Growing Up with Juvenile Arthritis
It started when I was four years old. That deep in the bone pain gnawing at my right wrist, making it difficult to use my hand. The mysterious swelling that appeared out of the blue and disappeared again just as suddenly. And the doctors who didn't believe, so many of them. Except because I was four - and five and six and more - it was my mother whom they accused of making it all up. One even suggested she see a psychiatrist. And then, when I was nine, a doctor took one look at me and told me I had Juvenile Rheumatoid Arthritis, just like that.
It didn't do much, having a name for it. This was the early 1970s and treatment... Well, what treatment? Very quickly after the diagnosis, I was admitted to hospital for tests and five weeks later, came home with aspirin and a vile, Pepto-Bismol colored liquid that tasted like artificial cherries. I don't know what it was, know only that to this day, cherry flavored anything makes me nauseous. Other treatments were tried, only gold injections in retrospect recognizable as a RA therapy, but nothing worked.
I had my first surgery at age 10 and over the next six years, I was home for perhaps a year in total. The rest of the time was spent in and out of hospitals, mostly for rehab, but once for severe pneumonia when my JRA went systemic, attacked my heart and nearly killed me. Prednisone saved my life, but sent me back to another hospital to taper off it. The last two years were spent in a hospital bed, waiting for hip replacements to repair my fused hip joints. And then I got my new hips and could sit up again, got my first power wheelchair and went home. And to this day, I will do anything to avoid being hospitalized again.
Growing up with a chronic illness had ripples. When I was home, I missed a lot of school and when I did go to school, I was the different one, disconnected from my classmates. It was lonely at best and at worst, I was bullied. The hospitals had tutoring, some better than others, but a few hours a day did not compare to the full days that regular kids had. There are gaps in my knowledge that are not due to the passing of time and forgetting what I learned, but to inconsistent and incomplete education. I know nothing of physics and chemistry and anything related to advanced math is a void. How I managed to pass statistics in university is still a mystery to me.
Those years between age 10 and 16 are important ones. You learn how to interact with others, socialize, begin to figure out the steps of the dating dance. Spending most of those years in a hospital, a largely all-female environment taught me important things like handling pain without crying, establishing good relationships with people in a power position and surviving on hospital food. It socialized me, but in a completely different way from what most kids that age learn. Going back to school was like being dropped on another planet where you know nothing about the language or the culture. Once again, I was the different one, but this time I wasn't bullied, just left alone. I made friends eventually, learned to be in the same place as they, although there was always part of me that felt different. Having JRA made me both older and younger than my contemporaries.
For a long time and no matter where I was, I felt as if I were slightly out of sync with the world around me. For a long time, I felt separated from my surroundings by all those days and months and years spent apart in a social bubble, the space almost impossible to bridge. It took years before I felt like I was part of the world, felt comfortable talking to others outside of a healthcare setting and to this day, I am utterly incompetent when it comes to smalltalk. Although that might be because it bores me.
Today, there are treatments for juvenile arthritis, therapies that mean kids like me will not have an experience like mine. There will still be too many doctors for those kids, too many hospital stays, too much pain and too much of such things that make you grow up very quickly. And kids will still somehow be the different ones, set apart by their illness, but because of better drugs, they'll have much more of a chance to live within the world, instead of apart from it. For that, I am grateful.
July is Juvenile Arthritis Awareness Month. To learn more, visit our Juvenile Arthritis area and be sure to check back throughout the month for more JA content .
Lene is the author of the award-winning blog The Seated View