Wednesday, May 2, 2018

Raising Arthritis Awareness Within the RA Community

1st year with RA
Since early 2004, I have worn many RA hats. When I was first diagnosed, I was quite active. With two young children, I had to be. But besides running after kids, I worked out regularly. Then things took a nosedive and I was embarrassed for my family to see me walk down the five stairs to the main level of our house. Then I improved. Then I got worse than ever. For several years I struggled to lift my bed sheet over my chest. Today, I am in a good place again. FYI, a good place to me means I can do just about anything I put my mind to but I fight fatigue on a daily basis, have occasionally knee flares, and humidity makes my fingers swell to a point they won't move.

All I see in this photo is the pain I
was in and the prednisone I was on.
My journey with RA has taught me a valuable lesson that I want our community to understand and then liberally share with the world. There is not a one size fits all when you are diagnosed with RA. Sometimes I feel like our own community doesn't understand this fact. It breaks my heart when friends who have struggled with pain finally get to a place they can share a photo of themselves doing yoga or running a 5K and are instantly accused of "not really having RA." That's not okay.    

Modern medications are making it possible for many of us to move outside of the lines that have been drawn for us by research, doctors, and even our community. When I was at my worst, I wanted nothing more to read about someone taking up weight training, starting a new job, or adding on to their family. These are the people that gave me hope that my life with RA could and would change. Let's learn from each other. Let's support each other at where we are right now. Let's let go of the competition that is often found in our community to prove we are sicker than anyone else. 

Living life!
When we tear each other down because of lack of information about the full spectrum on RA or out of disappointment about our own RA journey, we hurt each other. Attacking someone in the community scares them away and all we are left with are the worst case scenarios. While these stories are also needed, they don't show the full picture of what our community is doing. I believe we are diverse and full of numerous stories to be told, we just have to be ready to listen!