How to Stick Out
Even as a young child I remember that I couldn’t pass in public. What I mean is that I always stuck out, no matter how I tried, because people could sense my physical difference and illness.
When I was a new rheumatoid arthritis patient my first symptoms were tremendous knee swelling and limping. The moment someone looked at me they could see the pain on my face. If I walked or moved, it was always with difficulty. There was no ease about me—like a siren going off in everyone’s head.
I have this picture from when I was in elementary school of me standing in the yard, showing off a new outfit for the first day of school. I can’t see any obvious joint deformities in the photo, but I do see a pale, pain-filled face. I’m smiling and looking cute, but I cannot mistake the pain emanating from my eyes.
Since I have lived so long being a person who stands out from the crowd, I no longer have any idea of what it feels like to blend in. My bent joints and limited range of motion are obvious. But you’d have to get past my motorized wheelchair to even notice these. People may not know my condition, but rheumatoid arthritis is visible at all times.
I feel for my friends with RA who struggle with an invisible illness that they have to explain to others, who are often not understanding and supportive. While there are things I don’t like about always being visible, at least I don’t have to defend myself and explain that I have pain and a condition that can make life challenging. It is obvious!
Since there are not many people like me, with this level of severe RA, I do stand out and try to educate others and support my community to pave the way for an easier life. I was diagnosed about 35 years ago, so consider myself a bit of a dinosaur. My hope is that the new treatments will prevent others from having to live with the disability to which I have become accustomed. I hope that my story will be rare.
Still, it can be exhausting to always be visible with my rheumatoid arthritis. People stare or treat me strangely. It hurts my feelings when other people with RA are afraid of me because they don’t like to see the damage the disease has done to my joints.
When I leave my home I often have to get into “warrior mode” to fight for space in the world. For example, taking public transportation can be a grind when people don’t make space for my wheelchair on the elevator, platforms and trains.
One of the silly pleasures I take in sticking out in the world, is staking my claim on being “the woman in the red wheelchair.” I’m often attending events or setting up networking meetings for my work and will designate a place to meet noting: “You can’t miss me as I’ll be the woman in the red wheelchair.”
While I’ll always stick out, I can use the power for good. I don’t let my difference keep me locked in others expectations or preconceptions. I work to educate others about rheumatoid arthritis and making room for people with disabilities in our community. And I strongly believe that leading an active, satisfying life sets a precedent for others and paves a way for more possibility. I may stick out, but I never feel stuck.
Have you shared tips on how to manage RA with anyone before?