I use a motorized wheelchair and its one of the best decisions I’ve made for my quality of life with rheumatoid arthritis (RA).
After my diagnosis with RA at age 2 the disease attacked my joints aggressively. In addition to the best medications at the time, I had frequent physical therapy to fight the damage and keep my joints strong and active. But by the time I reached middle school, I no longer had the strength and endurance to walk to my classes all day.
My family was faced with a hard choice, one that felt like a partial defeat. I needed a wheelchair to help support me while at school. At the time I felt a huge relief. I was exhausted by these walks, by holding on to the cement walls, so that as other students brushed by I wouldn’t lose my balance and topple over. Then I get to class and recover only to have another trek to another class.
With my little manual chair I could pedal myself to class or a friend could push as I held their books. I had more energy for my lessons and other things I needed to do throughout the day.
But, was I giving up? Looking back, I don’t think so. I had to adjust to the damage of my RA and consider a balance between maintaining my health and having a quality of life. Even if I had spent the last 30 plus years in continuous physical therapy, I would still have a severe disease and lack the wonderful life experiences I’ve accumulated along the way while using my wheelchair.
My manual wheelchair supported me through middle and most of high school until senior year when we decided I needed something more. Despite my best efforts, I just didn’t have the arm range of motion and strength to propel myself in a manual chair. As I was planning to go to college, we knew that pedaling with my legs wouldn’t get me across campus to various classes.
It was time for my first motorized chair. My parents took me to the wheelchair vendor where I tried out a few different chairs. My preference, of course, was for the fastest!
In my motorized chair, I enjoyed newfound independence. I could take myself to all my classes and extracurriculars. It was a taste of what I would discover in college and then living independently afterward. I learned that despite my disease I could be mobile and independent, that I wasn’t limited by the size of my joint contractions or the weakness of my muscles.
After we got my chair, my parents asked: why didn’t we do this earlier? I think there were many reasons. We didn’t realize what I was missing. And I think we also feared that using a mobility device would adversely affect my disease. But with continuing my exercises and treatment, I still can walk short distances and do what I need to do.
Many people with RA use mobility aids, from canes to walkers, and I support these choices. These tools are available to make our lives better and just a little bit easier. It may be scary to make that decision, but it also may surprise you how much energy a mobility aid frees up for the good parts of life.
For me, a motorized wheelchair has been life-changing and liberating. I go to work, travel about my town, take trips in the U.S. and even travel abroad with my chair. None of this would be possible without my wheels, my hotrod. Not only does my chair enable me to be more mobile, I always feel a little burst of happiness as I pull onto the sidewalk and feel the wind in my hair when I zoom off to my destination.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?