Autoimmune disease -- and arthritis in particular -- is a very
frustrating illness to help find a cure for. Arthritis doesn’t have a celebrity
who is on TV all the time, constantly crusading. Arthritis doesn’t have a color
of ribbon to call its own. Arthritis always ends up last on most people’s
donation lists, if at all.
Simply put, arthritis isn’t sexy.
Many of us who suffer with arthritis have experienced this bias firsthand. If you don’t know what I am talking about, try this simple experiment: The next time someone harasses you for a donation when you are coming out of the grocery store, tell him or her you will match whatever he or she has given to children with arthritis in the last year. If they look at you like you have four heads, then you have just been privy to the non-sexiness of arthritis.
Let’s face it folks, we will never be breast cancer, we will never be AIDS, and we will never be autism. Those three diseases are what I consider the trifecta of sexy charities, and they account for the top three most compelling draws for the limited amount of charity money available (based on my own, admittedly biased, research).
Even if arthritis was next on that list, right at number four, the outlook would be much sunnier. Unfortunately, on the list of appealing charities, arthritis is right below tennis elbow and just above children without iPods. Now, I know T.E. is a plague in our time, and CWiP is too tragic to bear, but there is no excuse for the number one cause of disability in the U.S. to have to struggle to fund research.
"But Dan," you might be saying, "I consider arthritis and it’s cousins to be a legitimate handicap and something that must be wiped out in our time." Well, faithful reader, I agree with you, but the simple fact is that if you are reading my column, chances are you already have a pro-arthritis bias. What we need to do is find ways to bring the modern plague of arthritis to the top of the trendy cause list, and this isn’t going to happen on its own.
As much as I sympathize with Phil Mickelson and hope he suffers a minimal amount of discomfort, by coming out to the public about his disease and then acting as if nothing serious has happened, he did our community a great disservice -- prudent for his career, sure, but also a bonanza of arthritis misinformation.
When Phil Mickelson announced that he had psoriatic arthritis and then promptly showed up in Enbrel TV commercials, telling everyone that his disease is now happily under control, he sent precisely the wrong message. The fact that Phil has gone on to place in the top three in major tournaments since then has only served to drive that incorrect point home.
Forgetting that most people already think that arthritis is something that only affects the elderly and retired athletes, Phil gives the impression that the disease is nothing serious. In fact, he was back on his game in just months.
No one ever told the public that since Phil was treated with drugs that didn’t exist 10 years ago at the outset of his illness, he was spared any of the more serious effects of a potentially embarrassing and crippling ailment. The entire affair only served to reinforce stereotypes about arthritis that are now so pervasive you can turn on your TV and within an hour, find misinformation about rheumatoid arthritis (RA) and its cousin diseases being spread like lice at summer camp.
I’ll admit, it paints a bit of a gloomy picture, doesn’t it? Let’s face it, arthritis is the smelly nerd with the black glasses that no one wants to be a lab partner with. This past week, though, I had an opportunity to participate in two events that gave me a great amount of hope for the future.
For the last two years, I have had the privilege of serving on the committee for my local Arthritis Foundation chapter’s annual walk. Yes, I realize that having a walk for arthritis is like having sex for abstinence but it’s out of my hands.
This year Allison joined me on the committee. Our duty, among other things, was to form a team and generate as much money as we could to help with research. Personally, I feel awkward asking my friends to give me their hard-earned money. The hardship of these economic times only makes me feel worse. Fortunately, someone gave me some sage advice years ago, and it’s this: your friends and family want to help you, they just need an avenue to do so.
I was skeptical at first, but when the day of the walk came and we had almost doubled our goal of $1,000 dollars, I was overcome with a feeling of pride. Not only that, but 15 of my closest friends and family actually showed up at the event even though it was an hour away on a Saturday morning.
I was so proud of everyone for stepping up when they did not have to; it almost moved me to tears. The rest of the event was fantastic, and the weather held out to make a wonderful day.
Since we double-booked that day, we had just a few hours to get ready for our next arthritis event -- a gathering of young adults with arthritis in Manhattan. After a short rest, we packed into the car once more and headed into the city.
When we walked into the room, we were surprised to see that most of the participants were our age -- not younger as we had suspected. Within a few minutes we met several of the people at the event, and found out that we weren’t the only ones who were interested in spreading the word about arthritis. In fact, there was even someone there who recognized me from reading this column and paid me some very moving compliments (thank you so very much, you truly touched my heart). Allison and I even learned of a conference that is held yearly to educate about and discuss all things arthritis. We may even participate this year! All I could think the entire time was "this is exactly what arthritis needs."
So there is hope! My generation, the late-twenty-, early-thirty-somethings who will be the future leaders of the movement have not given up. There are plans afoot, and we will be heard. Our voices are starting to reach the right people’s ears and that means things may change sometime soon.
I still believe we will never find a celebrity to be the proper face of our cause, but you know what, that’s OK. We will make our own face, and rather than being distracted by the fame, people will be immersed in knowledge. It’s time for that smelly nerd called arthritis to grow up and become the CEO of Replacebook. Ha!
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