Disease Management vs Disability Management
I’ve been thinking a lot about the distinctions of living with a chronic illness while also living with physical disabilities. These experiences are definitely interrelated, but they also have differences.
In my case, I had rheumatoid arthritis for a while before I had disabilities resulting from the disease. As I was diagnosed at age two, it was a number of years before my illness permanently harmed my mobility.
Throughout my life, I have worked to manage my RA to minimize my illness and disabilities. However, because I have had a severe form of the disease for many years, I have developed disabilities that also require management. By this I mean, using a motorized wheelchair to help with mobility and adapting my life to some of the physical restrictions I live with.
Impact of disease management and disability management on each other
However, I have to acknowledge that disease management and disability management do impact each other. They can overlap and bring complications to one or the other. An example is that regular exercise is important for managing RA, but I need to do adaptive exercise because of my disabilities resulting for the disease. I cannot run or bike, but I can do aqua exercises and strength exercises as long as I am careful about not straining myself.
As I have aged with RA, I have also experienced increasing physical limitations. My goal of disease management focuses on minimizing disease activity, but it also is important for me to be as comfortable and able to live the life I aspire to live.
This means that I don’t let my disabilities dictate my life. I may use a wheelchair, but it doesn’t stop me from working, traveling, and enjoying life with my husband, family, and friends. I may need to do things differently at times (such as needing a ramp or elevator instead of stairs), but I’m proud that I don’t generally see my disability stopping me from enjoying life.
In fact, I more frequently feel that it’s my RA that disrupts my life. It’s the sudden flares or fatigue attacks that can really mess with me. Sometimes I have to put life on hold to handle the challenges of my disease.
And while the RA treatments help to manage the disease (ideally), they also cause problems by making me susceptible to illness or throwing crazy side effects into the mix. It’s another wrench in disease management when you also have to contend with the challenges of the medications.
Managing RA is more challenging
Most people would probably see me and feel sorry for me because of my apparent physical disabilities. And I must be honest that it’s not always easy to live with disabilities because the world is not always an accepting or accessible place. But I definitely find the challenges of living with RA more difficult. When I encounter a physical barrier, I can use my wheelchair to get around it. When my RA flares, there’s not a lot that I can do.
The differences between disease management and disability management are sometimes subtle. But I think it’s important to tease these challenges apart, to better recognize and understand them. Only by knowing can we be better prepared to face them.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?