Team NYC Sick Chick Club. Photo by S. Nash.
In what is probably my most read article, RA: The Loser Disease, I lamented RA’s D-list status in the world of cause célèbre. Hardly a soul knows what color our awareness ribbon is, much less what the disease is, that it’s different from osteoarthritis, or that it is just one of over a hundred forms of autoimmune arthritis. But last Sunday, all across the country and in New York City in particular, hundreds and thousands took to the streets for the Arthritis Foundation’s annual Arthritis Walk to help spread awareness and raise funds for research, and I was among them!
Decked out in my colorful orange team shirt, I joined my fellow NYC Sick Chick Club team members on what was a rather dreary, drippy morning. I had never done a 5k before, and as I arrived at Battery Park at the lower tip of Manhattan, I thought back to my ‘Loser Disease’ article, written well over two years ago, and how I had remarked that “the idea of having a big walk for RA strikes me as being a little flawed 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.”
My how times have changed. When my friend Jodi emailed me several months ago to let me know she was starting a team for the Arthritis Walk in New York under the banner of the NYC Sick Chick Club, a happy hour support group for young women with RA that I began through my blog, I barely hesitated to sign up for it. I figured that chances were pretty good I’d be able to walk 5k without too much of a problem since my drugs have knocked me into medical remission (eek- I said the ‘R’ word!).
I signed up…and before I knew it, the NYC Sick Chick team had grown to over 20 members, and our team goal of raising $2,000 was met and exceeded four times over! I was really excited to meet several women on our team whom I knew only from emailing and the online RA community, including fellow blogger Maya from Loving with Chronic Illness. As I stood at our team’s registration table with Jodi and her husband, Chris, everyone who walked by admired our fabulous t-shirts, designed by NYC Sick Chicker Alison…and as the Arthritis Foundation’s New York Chapter kicked off the walk with a few speeches and announcements, we found out that we won the team t-shirt contest!
Looking around, there was such an array of people gathered– some were young, some were mature, some had canes and wheelchairs in tow in case they were needed, while others betrayed no outside signs at all that their joints harbored damage or pain. During the group warm-up, though, it was clear that many people had limitations and that movement didn’t come without effort, especially on such a damp and chill morning. I felt a little guilty as I looked around. My symptoms are so minor now; other than some achiness in my hips, I had little to complain about.
Several cheers and shouts later, and the walk began. Along the way, I chatted with Victoria, a fellow teammate whom I had emailed with but had only just met. It was great putting a face to an email and reminded me why I had started writing about RA in the first place. As we walked, we swapped ‘how did it begin for you’ stories. She asked me which joints of mine had been affected, so I began to recount them all one by one: my jaw (both sides, but the left in particular), my cervical spine, the joints that connect my collar bones to my shoulders, my shoulders, both wrists, the majority of my fingers, the joint at the base of my hand, my hips, knees, ankles and of course, the disaster zones that had previously been known as my feet and toes. Recalling how I had barely been able to turn my head from side to side or raise my arms above my waist really drove home just how much has changed for me in the last three and a half years and allow me to be there that day, walking a 5K. The difference working meds, great doctors and good self-care have made for me is pretty staggering. It’s hard not to feel overwhelmed when it all comes into perspective.
As we made it past the halfway point and headed back, I felt hugely appreciative and thankful for all of the other people at the walk, many of them young like me; many others veterans of this misunderstood disease. It felt especially inspiring to see people I’ve met through the online RA community in person, but most of all, seeing and experiencing how much it meant to all of us with all our different forms of arthritis to be out there together, walking or riding as best we could, each with our own individual story and journey, made having RA feel not quite so loser-ish for once, or at least in that moment, not quite so lonely. And that makes a difference.
Remember to join this week's Arthritis Awareness contest! It's not too late, just click here!
Are you a sick chick in NYC? Find out more information about the NYC Sick Chick Club here.
Sara is the author of the blog The Single Gal's Guide to Rheumatoid Arthritis.