Being “normal” with JIA:  How a young person copes

Mother’s words jangled in my ears as I lay in the hospital bed, “Juvenile Rheumatoid Arthritis”. I immediately burst into tears! I was sobbing not because I understood what this meant, in fact, just the opposite. I had no idea what any of those big strange words meant. I had never met any one with these big words “attached to them”, not in my family or among any of my relatives or friends. All I knew was that it must be bad, very bad!

Mother sidled up to the bed and asked quietly why I was crying? I had seen the serious look of concern on both her and my father’s faces when they had arrived that afternoon. Was I in pain suddenly? No, no it was just I didn’t know what to expect; I didn’t know what to think. She asked me if life was okay the way it had been these past few months and I agreed that things were, “Okay”. Then she said it was going to be just the same now, not any different, this was not a disease that killed people and for that we could be very thankful.

Mother was right of course; all of the hard parts of the adjustment to life with arthritis had already been made. We had spent the last year dealing with advancing and progressive swelling and stiffness in my ankles, knees and elbows. The dancing lessons that I had loved for 8 years and since the age of 4, had ended abruptly. I had already had to deal with that loss. The baton twirling and Majorette team had also been abandoned. All of the activities that were the “fun” part of my life had been temporarily put “on hold” and now the “on hold” part would just become permanent.

There was some discussion that I may not be allowed to go to the junior high nearby since I could no longer participate in their mandatory Physical Education (PE) classes. Inclusion of children with disabilities in their local school was uncommon at that time. Fortunately, I was a good student so the District decided I could continue and simply help in the Library during PE. At school, a teenager’s social life is difficult enough for the average healthy young person without the added problems of being different or “not well” enough to participate in team sports, ice skating, skiing, hiking or other outdoor activities. Being different meant that I easily fell into what would be called the intellectual “nerd” role in today’s high schools.

I was very fortunate to have a family doctor who obviously cared about his patients and investigated all possibilities for them. When I was 15, he told my parents that I would be going into GF Strong Rehabilitation Centre for intensive physiotherapy with The Arthritis Society. CARS, as they called it then, was still in its infancy and Mary Pack and Dr. Harold Robinson were leading the way with research and treatments for arthritis. While Mother protested about sending me to the big city of Vancouver alone for a few months, the decision was clearly not hers, I was going and that was final. I can truthfully say that the experience was pivotal in my life. During the intensive program I had the opportunity to learn about my disease, to learn how to cope with flare-ups, to learn the importance of exercise and rest, to learn the kind of exercises that were best suited to my problems, to learn the importance of taking my medication regularly, to learn about and acquire the aids to ensure that I could remain independent in the activities of daily living, and to learn how to adapt and cope with the limitations which my illness has imposed upon me. As a result of this opportunity, I developed the confidence to become an independent, productive member of society. Outpatient therapy could never have done this for me.

In the rehab center, I noticed the difference that personal resolve and determination could make in difficult situations. Patients who were in far worse shape than I was could regain so much with hard work. I discovered that a person who had “resolve” or took initiative would eventually have some success despite all of the obstacles. I also discovered that those who sat back, felt sorry for themselves and refused to work would also remain sitting, perhaps for the rest of their lives.

The GF Strong experience showed me that there was another life beyond school and its social pressures and I could hardly wait to be finished with school. I wanted the freedom to go on to College, where I could fit in and hopefully no one would have to know about my disease unless I told them personally. I could be “normal”, I could be me, not the girl with the “health problems”, and I could “choose” not to like skiing. I resolved to never mention the arthritis unless I was forced to. I could cope. I had learned how to deal with this disease. I would take the medicine, do the exercises, make the ice packs, whatever was necessary, but I would not tell the world a thing about my pain. This was my freedom!

(Footnote: When my son was 12 years old, I was surprised to discover he did not know I had a disease called arthritis. He had grown up thinking that all women or mothers should be treated with care and only touched gently, with definitely no rough-housing allowed.)