This year the Boston Marathon was a huge part of my life. No, I didn’t run it. I have RA and even with my joints in remission, a marathon is many too many miles long for me to walk, let alone run. But I did have a special friend who ran it to support Christine’s Kids, my Facebook page to create awareness for kids with arthritis. At age 65 Dr. Fraser Perkins finished in good time and we raised money for Juvenile Arthritis research. He doesn’t have any JA in his family; he simply has a kind heart and wanted to make the marathon about more than running. I asked him after it was all over how it felt and this is what he said:
“During the final few miles of the Boston Marathon, my pace slowed as I had to walk a few steps before running again. I simply couldn’t go any faster. As this was happening, I realized that my difficulties were only temporary–once the race was over, everything would be back to normal. I also knew that for kids with JA, facing difficulties like this was constant; their ‘normal’ was pain and difficulty walking, much less running. I felt lucky for myself, but sad for kids who are limited by disease. They and their parents deserve our support and encouragement.” Dr. Fraser Perkins
His words resonated with me for several reasons. First that he associated his difficulties towards the end of the race with the daily lives of JA kids that deal with these issues every day. Second that he realized “normal” is different for so many people. Especially people with Rheumatoid Arthritis or kids with Juvenile Arthritis.
Now if only we could get the media to understand that there are over 100 forms of arthritis and that most of those forms are not about being old. There lies the stigma of the disease. There lies the reason media doesn’t want to talk about the disease. There lies my frustration as a media person, after twenty years hiding my RA now wanting to talk about something more serious than fashion and beauty.
As anyone knows who has the autoimmune version of arthritis, meaning RA, JA or one of the many more diseases under this huge umbrella, this disease is not just a sore, slightly bent toe or finger. This disease is not just a tender knee or a sensitive elbow. The autoimmune disease can and does attack every part of the body from joints to organs. It is serious and can be deadly.
But how do we get the word out? How do we get the media who mostly reports about osteoarthritis—wear and tear of the joints—to understand that rheumatoid arthritis is a far more serious disease? How do we get the media to report on the difference? This is what media is supposed to do, stories about real life, stories about children robbed of their childhoods, stories educating their audiences to health issues. And yet the media is not really interested in arthritis, especially the autoimmune version of arthritis. Why? Because celebrities don’t associate themselves with arthritis. OK, maybe an athlete does a commercial for arthritis relief that comes with a big paycheck but the audience already knows that athletes get arthritis because they wear their joints down.
The media could change all of that. The media could make people understand what arthritis is and that kids do indeed get arthritis. Babies trying to crawl, infants trying to walk, toddlers trying to run, 6-year-olds trying to ride a bike, teenagers trying to play sports or dance. Children fighting to have a normal childhood that eludes them. Do you ever see an advertisement for arthritis medications with children struggling to run and play? Do you ever see a commercial with a petrified crying child in the hospital for an infusion of medications hoping to ward off the devastation of juvenile arthritis? The media could change this. They could make people understand that arthritis is just not a word associated with aging. They could remove the stigma, bring awareness, make a difference. Isn’t that the job of the media?
I rest my case.