Explaining My Rheumatoid Arthritis
Over the years, talking about my rheumatoid arthritis (RA) and explaining it to others has changed as I have shifted my mindset and experienced the progression of the disease. I have always felt very forthcoming and not shy about talking with others about my RA, because I genuinely want people to know more about conditions and disabilities and to become less fearful and more accepting of health diversity.
I am living a great life with my disability
When a child asks why I use a motorized wheelchair or why I don’t walk, I explain by saying that I have an illness in my bones that makes them too sick for walking, and my wheelchair is wonderful for helping me to get around. I try to convey that, while I have an illness, my wheelchair supports me in the world and is a benefit (not a minus) to my life.
Truly, I wish more people understood this when they encounter me. I am living a great life with my illness, with my disability, and with the help of devices like my motorized wheelchair.
My wheelchair has helped me live my life
When I talk to people and am comfortable, I am open about being diagnosed at 2 years old and that my disease has been aggressive and progressive. I tell them I have used a motorized wheelchair for decades and that it has helped me to live my life, work full-time, and take splendid trips.
If they seem interested in knowing more, I will talk about my many joint replacement surgeries that started in my teen years, the pursuit of effective treatment (which happened for me only a few years ago), and the continuous work of maintaining my health despite a progressive disease. If people ask, I will also talk about my constant chronic pain and how that has affected me, but it is not something people generally think about or want to know about.
Intrusive questions from strangers
There are times when I don’t want to have these conversations, like in random encounters with strangers on the sidewalk, public transportation, or while trying to get my grocery shopping done. My illness and disability are personal, and I don’t feel comfortable talking about these things with strangers.
Random people will come up and ask me intrusive questions that I would never dare ask others. It still shocks me when this happens, that people treat me like an object for public consumption (and don’t get me started on people who want to use my wheelchair as an armrest).
Opening a window to the RA world for others
A lot of my conversations about my RA are guided by the other person, their interest, and their response. I don’t call myself the encyclopedia for all RA experiences, but rather talk about what my personal story has been with the disease.
I also feel that there is only so much people can handle or want to know. I feel it’s my role to be an introduction to the disease and my experience of disability. I am opening a window to a world they can choose to learn more about if they are interested.
One day, I hope these issues receive more attention
If I know a person (at least a little bit) I am more than happy to talk about my RA and the story of my life with the illness. And I am careful to observe their reactions and limit my discussion to what is also a comfortable place for them. Most folks don’t want to see my joint replacement X-rays (although sometimes I’m happy to show them), or hear about the challenges of chronic pain. And that is OK! But if they want to know a little about life with RA and using a motorized wheelchair from a young age, I am happy to talk about it.
Perhaps the trickiest issues that I rarely get to expound on but would love to have more opportunity to are the issues with fatigue and pain, or the many daily challenges I experience with inaccessibility and ableism (discrimination). It’s my hope that one day, these unspoken issues will be able to receive more attention and exploration in my conversations.