Whose Story to Tell?

In 2007, my family was able to travel to Washington DC to participate in the Advocacy Summit to try to get Congressional support for the Arthritis, Prevention, Control and Cure Act. We were so excited to hop on the soapbox and share Caitlin’s story on behalf of the 300,000 children affected by arthritis in the U.S. I made little tri-fold pamphlets to hand out that had her story, along with the stories of five other children we know. We eagerly absorbed all of the fabulous training at the summit, the facts and statistics, the best practices for delivering packets to the Representatives, the must-do list for achieving our goal. So, when we visited our House Representative – we had a solo show, and our message was OUR message, all about JIA and kids and what the bill would mean to US. But when it came time to visit our State Senators offices, we were with a rather large group form the entire state of California. There were probably about thirty of us – from a fairly diverse arthritis background. Somebody had Lupus. Somebody had Dermatomyositis. Somebody had Ankylosing Spondylitis. There were people with RA, children with JIA, adults who had grown up with JRA, and several people with OA. We were all very different people, with different experiences – but one unified goal. As we squeezed into a large conference room, I wondered…. Whose story should we tell?

With over 46 million people affected by over 100 forms of “arthritis” – there are so many different stories to tell. It is natural that each of us would feel our own experience, or that of our loved one, is especially compelling and deserving of attention. And we don’t want attention in the form of sympathy – we strive for awareness… and increase in understanding… and acknowledgement. We want people to know about the rare auto-immune diseases, and that arthritis is not just a disease that affects older people, nor is it a disease that you can always see. We want medicines that work for the specific disease that hurts OUR loved ones… and sometimes it feels that we stand in the shadow of larger numbers and more widely known diseases.

I admit that when I first started becoming involved with the Arthritis Foundation, I wasn’t thrilled with what I saw as a lack of focus on juvenile arthritis. Looking back, some of my complaints were valid – and I truly believe there have been tremendous improvements over the last five years. But I can also see that some of my issues were grown from my own myopic view, tethered in emotions of dealing with my daughter’s illness. Over time, I have come to realize that her story is no more important than that of the young adult getting RA, the person battling AS, the older person retiring early due to OA, the person battling Lupus…. But, I know that there is a place for using my daughter’s story. I know there is an audience because she is young and cute… and it is somewhat breathtaking and makes people stop to think when an 11 year old has had a hip replacement already. I’m involved emotionally – so as her mother, of course, I think everyone should listen… but rationally, I can also see the value of this story. I tell it as often as I can. And I know that it won’t be long before she ages out of this demo… and a new story will be told….

When you peel the emotions back and look at the numbers, it’s really Osteoarthritis that affects the greatest numbers of individuals. Certainly, there are more people with RA than with Scleroderma or Gout. But I think that these diseases are called a “family” for very good reason. Though not identical, the manifestations, causes and treatments are often similar, shared and overlapping. However, we also need disease specific research and education, because Fibromyalgia is not the same as Ehlers Danlos Syndrome.

Ultimately, for me… it’s about the end goal. I want a cure for this disease. While we work for a cure, I want more medications and better treatment options. Of course, I want to help people with every one of these stinking diseases, because I am human, and because I feel a kinship…. But selfishly, I also say that research into each individual disease will have somewhat of a trickle effect, to help many of the forms of arthritis in our “family” and get us all closer to our goal. There are only so many magazine articles, news stories, and radio interviews available… only so many opportunities to grab the public’s ear. So, personally, I am happy for all the coverage, all the stories, and all the awareness, whether it deals with juvenile arthritis or not.

We’re going to be heading back to Washington DC for summit in about four weeks. By the way, we should all tell our stories when and how we can… and I encourage everyone to contact their local and state congressional representatives with your own story. But when we are getting ready to head into that conference room with the varied stories to choose from, we’ll have to pick a few stories to tell, because there will only be so much time. Which ones? I’m not sure, but the goal will remain the same. Whichever will get the job done!


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