In January of 2004, I began having my first symptoms of rheumatoid arthritis. I woke up throughout the night unable to move my fingers and in the morning they were swollen. I kept going through my days trying to figure out what I would have done to create this pain. Fast forward to mid April 2004 when I saw a rheumatologist for the first time and I had extreme pain in my feet and knees and was struggling to undress myself – all within four short months.
I was one of the lucky ones in that my diagnosis came quickly, although the management of my RA didn’t magically happen right away. It took time on medications and it took spending a lot of time with my naturopath who looked at my condition from a variety of angles. What I remember the most from my first year of dealing with rheumatoid arthritis is the extreme fear I had about deformities. Every book I checked out on rheumatoid arthritis and every site I went to, even my own rheumatology office only offered photos of folks with severe deformities. Honestly, I don’t know which was worse for me at the time – the photos of the deformities or the fear of not being able to get out of bed alone when I had two young children.
Eight years later I find myself looking at a collage created by RA Guy titled Show Us Your Hands. The first time I looked at this poster I cried. At first I cried with sadness because so many RA folks have the hands that I feared. Then the sadness changed and as I looked at the poster full of hands I saw strength. These hands were not just about what rheumatoid can do to our bodies. (I now refer to any physical changes in my body due to RA as “wonky” instead of deformities. I think wonky is a lot more fun to say than deformities.) These hands are like trophies that show the world that we have survived a lot of both physical and emotional pain but we are still out here living our lives. Our beautiful hands with all their wonkiness still give to us everyday. Really, they are quite amazing.
What I didn’t realize in 2008 when I was diagnosed with rheumatoid arthritis was that each of us would follow a different path. Some of us would experience a lot of physical wonkiness while others may experience little to no wonkiness. So far, my wonkiness has been fairly minor and I am thankful for that. But when I look at the changes my body has taken due to rheumatoid arthritis, especially on my right foot, I am no longer fearful. Eight years of following my own rheumatoid arthritis path and connecting with others has shown me that no matter how forceful rheumatoid arthritis decides to be in my body, I am okay. While deformities were once my worst fear, I now realize I can handle whatever rheumatoid arthritis throws at me.
If there is one thing I wish I would have had when I was first diagnosed, it would have been the knowledge that we are all different. Looking at all the hands represented, I see that we have each responded in our own individual ways to this disease. We each have our own wonkiness or lack of wonkiness. Either way we do share one common trait and that is strength. This is what I needed to see when I was diagnosed. I needed to know that yes, my body may change physically, but I also needed to know that maybe it wouldn’t change all that much. This poster shows me the wide range of hands that have come together as a community to give strength to one another. Reading the comments and seeing the words of relief that we aren’t alone on this journey is absolutely remarkable.
If you haven’t yet checked out Show Us Your Hands, please be sure to take it look. You will be amazed.