I’ve been living with Rheumatoid Arthritis (RA) for more than 34 years. Since I was diagnosed around age two, I don’t remember a life without RA. You could say it has been a continuing theme in my life experience, sometimes playing a primary role and other times lurking in the background, yet always present.
With my RA have come medications, therapies, surgeries, complications, and associated health issues. Most people see my illness first and may never get beyond these impressions. I’d like to think a lucky few get to know me and better understand the complexity of a person living with a severe chronic disease, who is not solely defined by it. Like anyone else you meet in this life, I’m just trying to live the best I can.
I decided long ago, when I was a small child, that I would not be defined by my RA. It would bring me pain, physical limitations and disability, but it would not take over my life. RA is an unchosen companion in my journey. I live with it and manage it as best I can. At times it takes my full attention, otherwise, while it is a daily constant, I have created a full life for myself and am proud of achieving that.
Many of my accomplishments have been fulfilled by stubborn will and persistence. I lost count of the number of people who would tell me that I couldn’t do this or I’d never do that. If I had listened, where would I be? Instead, I listened to myself. Did I want to go to college? Yes, so I did and also later earned a Masters degree. Did I want to work and find a fulfilling career? Yes, so I did. I earn my own living and enjoy my work. Did I want a home and partner? Yes, and I lived independently for many years before meeting my husband and building a happy life with him.
During all of these life pursuits, I lived with chronic RA as it attacked my joints. I use a motorized wheelchair to aid in my mobility and I have to navigate the limits inflicted by a severe disease. But for me it was never a question about whether to pursue my life goals. It was only a matter of working persistently to build the life I wanted.
For me, wellness is not about being cured, but about living with the body I was born in. If my RA goes into remission tomorrow, I will still have the damage and disability it caused. My work is to manage my health as best I can and live well while doing so.