Being a Child with Rheumatoid Arthritis
When I was diagnosed as a child, they called my disease juvenile rheumatoid arthritis or JRA. I was so young that I don’t remember a time before the disease or even being diagnosed. My memory starts with joint pain and stiffness, the loss of joint mobility and periods of sudden decline.
It’s a crazy juxtaposition— feeling at once like a sick old person while still being a child. To me, that’s the essence of the experience. My joints felt old and decrepit, causing me to move slowly and carefully, yet I still tried to play and do the silly things children enjoy. It was like living two very different lives simultaneously.
My disease progressed aggressively when I was a child. Between the period of diagnosis around age 2 and 10 years of age I lost a great deal of joint movement and strength. By middle school at 11 years, I needed a wheelchair to go between classes.
Before I became sick, my mom says that I was incredibly active and couldn’t sit still. I climbed the furniture and jumped around like a monkey. Perhaps one of the things that makes me saddest is remembering how I began to hate walking because it was so exhausting and painful. We lived in the country on a hill and so the area was wonderful for going outside and playing. But I came to hate walking and dreaded it—anticipating how hard it would be. Before that time, I have a memory of my last “easy walk”, seeing my sneakered feet move me down the driveway to the bus stop, smelling the spring air and enjoying the sunlight. Everything after is filled with effort, fear and always pain.
As much as I was trying to be a regular kid, I was well-aware of having to grow up and take on more responsibilities than my years. I spent a lot of time with adults—doctors, physical therapists, occupational therapists, and others—who worked to help me manage my disease. So many blood tests and sterile smelling offices. So much waiting and hoping. And then the medications that tasted terrible, plus hours of exercises I didn’t want to do, splints that were hard and uncomfortable.
Being sick was a more than full-time job, but I also loved school and fun times with friends. At home I was a regular kid, even though we were all dealing with my disease. My parents made sure I not only studied, but participated in other activities like Girl Scouts, choir, band and spending time with friends.
I think one of the greatest values my family instilled in me was that, despite my disease, I needed to also have a life. I could not be “just a sick person” and spend all my time wallowing. No matter the pain and difficulty, I had to find a way to live in this world and find my path. Part of the challenge was coping with my disease and doing all I could to manage it and my symptoms. Another very important lesson was learning to cope with a world forever reacting to my difference, for better or worse.
Even as a child, there was great variety in how people treated me. My difference was very visible—swollen joints, limping, and limited movement. Some people would just ignore me and dismiss me outright. Others spoke down to me, which enraged me as a child and now just amuses me. Still others would go out of their way to bully and I had to learn to stand up for myself. Some people helped too much, while others didn’t help at all. Then and to this day, my favorite kind of person and a rare gem is the type who just treats me as a regular person. I’m lucky to have found a nice group of this kind in my personal life and at work.
Managing a disease as a child is a very difficult experience because you’re given way more than you can handle at a young age. You’ve got to mature to handle the responsibilities, but also remember to enjoy the fleeting time of childhood. I came away with a resilience and strength to fuel me through adulthood, but I wouldn’t wish it on anyone. Still, I don’t know who I would be if I never had JRA.
When was your last flare?