I played on a co-ed hockey team when I was a student at Lakehead University in Thunder Bay, Ontario, and I distinctly remember waking up one morning after a game to find that my fingers and toes were stiff. I thought, "Gee, that's weird," and it got even weirder when I casually mentioned it to a professor and he said, "Well, maybe you have gout." I had never even heard of gout.
When the symptoms didn't go away I consulted my family doctor, and fairly quickly she referred me to a rheumatologist. It was maybe nine months later before I received a diagnosis. Initially, the diagnosis was lupus. It was another four or five years before the diagnosis was changed to RA.
I thought I was a pretty good swimmer when I enrolled in a competitive swimming class. My 14-year-old self was embarrassed! They put me in a beginner class where I towered over everybody else, because they were all five, six years younger. I was determined to improve, so I was willing to endure some humiliation, and am I ever glad I did. I didn't know then that this activity would carry me through the ups and downs of life with rheumatoid arthritis. I feel so much better after my swim -- physically and emotionally. The weightlessness gives me a sense of freedom, something that can often be impaired when rheumatoid arthritis gets its own way.
I've always led an active life. I was never very good at team sports, but enjoyed individual activities like cycling and skiing. And I was always determined to get better -- as the story about swimming with the younger kids suggests.
When I was finally diagnosed with rheumatoid arthritis in my early twenties, I don't recall thinking, "Oh, no, my life is over." But over the years I had some pretty severe flare-ups. I don't recall them very clearly, even though I know they were bad, but my sister remembers having to bring me a cup of tea and holding the cup for me so I could drink it. And my mom had to pull the blankets up for me when I was in bed, because I couldn't do it myself.
For someone who is very independent, reliance on others can be incredibly frustrating, and it's a huge adjustment. I remember that my mom was concerned and worried about me, of course, and she wanted to help, and I would get so angry with her. It wasn't exactly that I was angry at her, but I was angry at my condition -- that I couldn't do small things for myself. I have never liked people hovering over me and fussing over me, but the fact was I needed some fussing over.
I was thinking to myself just today, while swimming -- which I can still do, thank goodness -- that with this disease the biggest battle is often the emotional one. When you can come to terms with the emotional aspect of RA, then you have a better chance of dealing with the physical limitations. You suffer enough from bodily pain. You have to fight to avoid adding a layer of emotional suffering on top of it.