A Progressive Regression

When I was 17, sports were my life. I skied, played softball, volleyball, basketball, soccer, and basically any sport you can think of. So when my knee started to swell, naturally the doctors thought it was because of a sports injury of some kind. It was only during surgery that they discovered it was arthritis.

Rheumatoid arthritis is when your body’s immune system attacks your joints. This causes intense and painful inflammation that can eventually result in bone erosion, joint deformity, and organ damage. But I had no idea of all that when I was 17. The experts say that rheumatoid arthritis can be inherited from a parent; I always tell my mom the next time she gives me something, I’d prefer money.

When the doctors told me, I had never even heard of young people getting arthritis before; I thought it was something that only happened to people my grandparents’ age. I didn’t fully comprehend how the disease would devastate my body. To me, the fact that I had arthritis was just an annoyance I had to deal with, an irritating pain that wouldn’t go away. And because of its gradual progression, it wasn’t like my body crumbled at once. My knee would go, and the next flare up would be a rib or an elbow. I didn’t suddenly lose movement in my fingers, toes, shoulders, elbows, spine, jaw, and knees. For me, it was a slow, painful progression of immobility.

I’m in the top three percentile of symptom severity. And when I was diagnosed 33 years ago, the treatment was limited. Now, there are so many medications that will slow the progression of the disease. One of my regrets is that I didn’t listen to a junior high school teacher of mine; he was diagnosed with arthritis around the same time I was, and he kept telling me to participate in a trial for a new drug. I had done trials before, and I was just tired of the inconvenience of the whole process. But if I had participated in the trial, my arthritis wouldn’t have progressed nearly to the level where it is now.

Many people assume I can’t do certain things. They look at me as if I’m helpless, as if I can’t do anything on my own.

The everyday things people do without thinking, like washing your hair, drinking from a cup, blowing your nose, cutting up food, and putting on make-up, require extra effort on my part. I can do them, but I use special tools to help me. Probably my biggest physical challenge is living in a northern Canadian climate where maintaining your dignity while walking on ice is difficult for most people, let alone people like me.

Even though my body doesn’t function like I want it to, and even though I experience bouts of severe pain, probably the biggest challenge I face comes from how others treat and perceive me. Many people assume I can’t do certain things. They look at me as if I’m helpless, as if I can’t do anything on my own. They don’t realize that I can do most things, that I want to do most things, and that I’m not afraid to ask for help when I need it. In the name of good intentions, I’ve had bags ripped out of my hands, I’ve been physically lifted into the air and carried places (I’m a small person, so this happens sometimes), my friends and family have been shamed for allowing me to carry things on my own. Sometimes, when people don’t understand my abilities, there’s a tendency to over-help.

Living with a physical disability is something that affects every part of my life, and I don’t know what I would have done without support. Having support in your life is so important, and sometimes just talking about what you’re going through helps. If you are living with arthritis or another physical disability and would like to talk to someone, leave your information below. Someone from our team would be happy to listen. Because you’re not alone in this.

Photo Credit: Andrea Schunert