The first time I came home with a shoulder I couldn’t move, my mother thought I was trying to get out of a math test. It made sense. I hadn’t played sports in over six months and my pre-teen rebellion had more to do with staying up all hours than trying injury-inducing activities. Few pediatricians talk about the possibility of arthritis with parents, and even fewer parents know to ask.
Juvenile Arthritis is an often chronic disease of the immune system that affects 300,000 kids (ranging from a few months old to eighteen) in the United States. My particular brand of arthritis is called Polyarticular Rheumatoid Arthritis. It means I have more than five infected joints, including the larger joints, such as knees and ankles, that often become inflamed and swollen. In my case, I have RA in every joint in my body and have lived with the disease for seven years.
The way it was explained to me (at age thirteen), the white blood cells sometimes didn’t recognize my joint tissue and attacked it instead of protecting it. Years later, I learned that the synovium (the lining of the joint) does not develop correctly, often overgrowing.
The problem with these explanations is that they both still rely heavily on theory. Not knowing the cause leads to ambiguous testing, shaky diagnoses, and little hope for a cure. There may be a genetic disposition in children with arthritis, but there is no proof of it. Nevertheless, children are tested for arthritis using a “Rheumatoid Factor” test that focuses on a specific antibody that is sometimes found in large quantities in arthritic people. Usually, kids haven’t had the disease long enough for a lot of antibody to be prevalent. And just because a child tests positive doesn’t mean that they have arthritis, it just means they have that “genetic disposition” that the medical profession clings to as an explanation.
I didn’t have the genetic disposition. I had arthritis two years before my 80-something-year-old grandmother got it. I spent four months in and out of hospitals and doctors’ offices being examined and re-examined, wondering, as any dramatic thirteen-year-old would, if I was going to make it through the winter.
The chances didn’t look good. I had sweltering fevers and often couldn’t keep down food. Or I had chills raking my body to the point I couldn’t take x-rays because I couldn’t keep still. At random moments, I would feel the excruciating pain of inflammation through the painkillers regularly being pumped into my bloodstream by I.V. I touched a hot iron once out of sheer curiosity as a small child; an inflamed joint feels like having at least five of those irons inside your joint and you can’t get them out.
Taking medication for arthritis is like playing remedy roulette. Arthritis medication suppresses the immune system to protect the joints from the very cells that should be defending them. So I got to go back to school, but I had to start picking fights with my germ-infested peers to keep them and their runny noses away from my poor, defenseless system. If I was too nice, I’d catch every cold available. Eventually, the mere suggestion of a sniffle sent me screaming. It sounds cruel but when you spend more time at home sick than at school, you learn self-preservation at all costs.
Self-preservation, however, becomes dangerous.
Besides the germ phobia, I was also given a lengthy “never ever” list by my doctor. Living life is a treacherous process for those with weak ankles and knees. It’s impossible to imagine how many ways a sporty teenager actively uses her, joints but my rheumatologist managed to eliminate quite a few. He took away the fun ones, anyway – I noticed “vacuuming the house” wasn’t on the list of forbidden activities. The point is, in the midst of mass chaos, it is easy to comply with doctor’s orders and never leave the house again. He only wants you to feel better, after all. I did feel better sitting on the couch. It doesn’t hurt as much when you aren’t moving. But…then what? Sure, my body was calm, but now my mood was bleak. I was itching for excitement.
The way I see it, I can either be mobile all the time by sitting around doing nothing or I can do what I want and pay for that time later. I just have to make conscious decisions about things healthy people take for granted. If I want to go dancing, I clear my schedule the next day so if I’m in a lot of pain I can recuperate. I take it easy before I go rock climbing so I have the energy I need to have a great time.
Because I have an active form of arthritis, I’m always in pain. Every day, every hour, every minute, I hurt. Whether I’m sitting, standing, running, or dancing, I hurt. It makes life difficult, but never impossible. I just have to decide what is important.