Disease and Disability
Since I’ve had rheumatoid arthritis for more than 35 years now, I have accumulated a lot of physical damage from this disease. A lot of my joint deformities, contractions and limited motion struck in my childhood when the disease was most aggressive. Later changes have been more gradual and harder to track.
I’m still able to walk, but I haven’t been able to go further than short distances since my early teens. Around this time I started using a manual wheelchair during school so that I could travel between classes and conserve energy. I also had both my knees and hips replaced because these joints were so deteriorated. When I went to college I transitioned to a motorized chair because my arms couldn’t handle the effort of wheeling and the demands of moving between buildings required more assistance.
As a child I became aware that I had more than a disease or chronic illness. I understood that I had a disability because of my physical limitations that could not be cured. Adaptations like my motorized wheelchair and gadgets I can use to reach help me to live in a world not designed to meet my needs. But somewhere I crossed that line from illness into disability territory.
My experience is that disability often rests on how other people perceive me. For the most part I don’t feel disabled. I can go where I want (in my motorized wheelchair), work successfully, live independently (with adaptive equipment and an accessible home), and enjoy life in general with my husband. I am most reminded of my difference when I see it in the reactions of others, how they look at me or talk to me. Other times, it’s my illness that reminds me of my disability—a sharp pain, a persistent ache, a motion cut short by rheumatic joints or weakness.
Out of necessity I’ve learned to cope both with my disease and disability. If I want to live a full life and participate in the world, I have to find a way to manage. And my parents were strong guides as I grew up because they didn’t expect anything less of me. I had to study, do chores, apply myself to college, find work and an apartment—all of it. They provided support, but most importantly they didn’t take no for an answer. RA or no, disability or no—the expectations were set.
RA caused my disability, but the two are inextricable now. In order to manage by disability, I also work on managing my disease. If I can minimize the progression of the disease, hopefully I can prevent any loss of my current strength and abilities. But this life also requires practicality. I can’t ignore my limitations and must get the adaptations and help I may need.
In some ways, it’s a double job to both live with a chronic illness and the damage or disability it causes. They play into each other and complicate life and treatment. Sometimes health providers seem so intimidated by my disability that I have to work hard to get their attention as a patient. And just because I am a patient, doesn’t mean that it’s my only identity in life.
I’ve worked hard to have a life beyond my illness and disability. It’s the richness of experience, connections with family and friends, that provide me purpose. This is why I at once identify as a person with an illness and disability, but don’t see these aspects as limiting factors to my life. Rather, it’s a part of my life experience that is integrated into who I am.
My hope for others with rheumatoid arthritis is that disability doesn’t have to become inevitable, that treatment can halt the disease. But if you do suffer a loss of abilities, know that you can adapt, endure and continue to enjoy a fruitful life.
Do you expect to see a cure for RA?