Let's face it; rheumatoid arthritis is kind of a loser disease. I mean, if you have to get saddled with a disease, getting a popular one would make some things about the whole ordeal a little easier to take. For starters, when you told people what you have, they wouldn't: A. stare at you with a blank, slightly puzzled expression while trying to emit sympathy even though they have no idea what you just said or what that is, B. easily dismiss it because they have it, too, in their knee, their ankle, their shoulder....ahem, or C. tell you that now is the time to have RA thanks to the superdrugs out there, and besides, it's not like it kills you. (Never mind the fact that it painfully eats your joints, makes you feel like Death's best friend, and can land you in a wheelchair.)
If you have RA, chances are you know what I'm talking about. Just once, I'd love to get an email or a facebook invite from a friend asking me to a benefit for the disease I've actually got instead of some other one. Wouldn't it be lovely to be able to take yoga or pilates classes especially designed for people with RA? How comforting must it be to go to the bookstore after being diagnosed and see rows and rows of books all about your disease. Multitudes of books telling you what to eat for it, how to exercise for it, treat it and survive it. How to laugh about it, talk about it with your partner, your kids, your doctor, your boss, neighbor and that random person you bump into on the street. When I got diagnosed, I was so dismayed, not only to find out that I had a disease (obviously), but also to find out that I'd gotten stuck with a crappy, lame one that nobody seemed to know or care about. Restless leg syndrome had more books sitting on the shelf of my local bookstore than did rheumatoid arthritis. Nothing against restless leg syndrome, but seriously?
Part of the reason why having RA is so damn difficult, aside from the symptoms itself, is because, chances are, you didn't know what it was before you got it, and now that you have it, no one else knows either, unless they happen to have read a lot of Jane Austen. So not only do you get RA, but you get a kind of weird inferiority complex, like 'my disease isn't as good as yours since it doesn't have any bling, good merchandise or Lifetime movies about it.' We don't even have a celebrity as a spokesperson. Kathleen Turner finally revealed that she has RA in her recent biography, but sadly, it didn't make a big splash, and even if it had, next to all that juicy backstage gossip, her struggle with RA took a backseat in the telling of her story.
Sadly, for those of us who got stuck with RA, it is neither popular, well-known nor full of faux-glamour. Why do some diseases seem to capture the national empathy spotlight while others are relegated to the back of the bus? It's not just about the mortality rate, because heart disease is the number one killer of women, but breast cancer is a much more identifiable, better-funded, and well, popular, disease. It gets all the attention. Shelley Lewis, author of the sharply funny Five Lessons I didn't Learn from Breast Cancer (and One Big One I Did), writes about this phenomenon in her book, and it got me thinking. Why is RA at such a disadvantage?
For one thing, the fact that it won't kill you is a drawback in terms of being able to dramatize it in the media. In terms of having this disease, it is a really big plus, but compared to personal stories of struggle and triumph with illnesses like cancer or Parkinson's, it's just not tragic enough to pull on the heartstrings of the public (so far, at least). And, since it is a chronic disease, there is no 'Shout from the rooftops, I SURVIVED IT" moment. There are only smaller, harder-to-portray moments of glee and glory, such as 'HOORAY! My drugs are working! I don't feel like utter shit today!' But RA isn't ever really over, it's just dormant at times-- if you get lucky, that is.
From a publicity standpoint, RA is a hard case to crack. Its effects are often invisible from the outside, so most of the time, it goes unnoticed. Even in my sickest days, no one was ever going to look at me and think I was unwell, so how do you get people's attention about it, particularly on a large scale? I don't think there are any colors for an awareness ribbon left, though I suppose we could move on to patterns. Maybe RA could be polka dots or a perky Scottish Tartan? The idea of having a big walk for RA strikes me as being a little flawed (Arthritis Foundation does have one) given that many people with RA either can't walk, can't walk without assistance, or can't walk for long periods of time without suffering some real, no-holds-barred pain. I know I can't. I could get through it, but the thought of walking 5K, even for a cause so directly related to my well-being, doesn't exactly inspire me to go and sign up for one if I'm being really honest.
So, where does this leave all of us? I'm not sure I have the solution.....yet!
If you have any ideas, leave a comment!