35 Years of RA
This year I’m commemorating 35 years of life with rheumatoid arthritis.
Diagnosed at age two, I’ve racked up some mileage on my joints over the years. It’s a significant amount of time. My RA is an adult, bordering on middle-aged.
I’m not sure most people with RA have the disease this long. But in my book, every day is a win and incrementally I’ve been accruing them for 35 years and counting.
What does it mean to have such a well-aged chronic disease? Perhaps the easiest things to see are a lot of joint damage, pain, and health challenges. Another perspective is 35 years of triumph. Despite this serious chronic disease, I’m still here and living well.
When I was a child, my goals focused on doing well in school so that I could go to college and eventually build a life for myself. Some people didn’t think I could accomplish these things because of the severity of my illness. A “normal” life was considered unachievable. But I didn’t fall in for that kind of thinking and thankfully neither did my family.
I did go to college and afterwards moved to Washington, DC, for a job. I’ve built a happy life for myself here. For many years I lived alone and managed independently because I had adjusted to my illness and created accommodations for myself. Several years ago I was fortunate to meet my husband and make a life with a partner.
While my priorities were once about achieving normalcy and independence, I now am focusing on enjoying myself and quality of life. I don’t know what will happen with my RA, but I feel the need to live well every day.
Because I’ve had RA for so long, I don’t know how the typical milestones apply to me. For example, one common statistic is that the average person with RA can no longer work after living with the disease for 10 years. However, I didn’t begin working until 20 years into RA!
On the one hand, I worry about complications as I age with my RA—such as the problems people with RA may experience later due to heart disease and infection risks. But since I’ve had the disease for so long, I’ve broken the mold in many ways. I have to be aware of potential issues, but I have to admit that I’m charting my own course and it cannot be predicted.
I know that I have gradually lost joint mobility and strength over the years. I’ve developed adaptations and use tools (such as my wheelchair) to help me out. And it may not be a happy thought, but I have to adjust to continuing disability and do my best to cope as I age.
It helps to remember that we all have an expiration date, we just don’t know when it is. Living well today has become increasingly important for me. I don’t want to waste time on regret, but fill my days with good experiences and memories.
For me, enjoying my work is very fulfilling and I’m grateful to have that satisfaction. My home life is top priority—spending time with my husband, family and close friends. I treasure travel, good books and great meals. Time is fleeting and for me spending it well makes it worthwhile.
What will 35 more years of RA bring? I’m certain there will be more adventure and unexpected twists! But I’m not going to live in fear and dread. Instead, I’ll take each day as a win and enjoy the work of living well as long as it lasts.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?