When I was diagnosed with rheumatoid arthritis/rheumatoid disease (RA/RD) at age 22, I felt my world crumbling around me. I was supposed to be in my prime, yet I was overcome with pain, swelling, and fatigue.
I had to drop my last semester of college courses, delaying my graduation, until my symptoms were under enough control to write the lengthy papers required for my English major. It was 2000, and the new century was not off to a good start.
Learning what I could about RA
As I began working through the limited treatment options available at the time with my rheumatologist, I learned what I could about this disease. Like most people, I hadn’t known that arthritis could be caused by one’s immune system and impact young people like myself.
Feeling that age-disconnect
I started a subscription to Arthritis Today and, while I learned about life with RA/RD while reading it, I still felt an age-disconnect. Many of the stories about people with RA/RD were decades older than I was. In those early days of the internet, I couldn’t find stories about people like myself: college kids with RA/RD.
An article about a long-distance runner with RA
Then one month, my new issue of Arthritis Today arrived with a picture of a young, fit woman on the cover. She was older than me, but perhaps only by 10 years or so instead of the 30-40 years that often separated me from the people in the articles. I eagerly opened the magazine to read about the toned, athletic woman who apparently had arthritis.
What followed was intended to be an inspirational article about a woman with RA/RD surpassing all expectations. I’ve searched for the article online to fact-check my memory, but to no avail. My recollection is that the woman was a long-distance runner who’d managed to run a marathon since being diagnosed with RA/RD.
Throwing the magazine on the floor
While many of the details about this woman are now fuzzy in my brain, the memory of throwing the magazine on the floor is vivid. Rather than feeling inspired, I felt all the more dejected. If someone older than me who’d had the disease longer was running marathons, why was I having a hard time walking across campus?
Not only was I unable to lead the active lifestyle my college-aged peers were engaged in, but now I wasn’t measuring up to RA/RD standards either. I felt like my body was failing me and I, in turn, was failing to meet society’s expectations of me.
Lifestyle and treatment changes along the way
That was nearly two decades ago, and my perspective and my treatment plan have both come a long way. I’ve learned how unhelpful comparing myself to others is, the huge impact of stress on my disease activity level, and that continuing to discuss my symptoms with my rheumatologist and tweak my treatment plan can pay off.
Prioritizing my health, I left a highly stressful job four years ago and saw a significant decrease in my pain and inflammation levels. I also discovered the activator-method of chiropractic care, which has been very helpful for many of my flares.
These developments enabled me to start an upward spiral of slowly increasing how much exercise I get which, in turn, has helped my RA/RD symptoms which allow me to continue exercising more.
Building my way up to jogging
In February 2020, I was in the best physical shape I’ve been in since getting diagnosed 20 years ago, both in terms of fitness and RA/RD symptoms. I was regularly hiking, power walking, riding my bike, and swimming. Then I began doing something I never thought I would do again: jog.
My joints and shock absorption
To be clear, I can’t claim to have become a “jogger.” The very idea of running on pavement still gives me shudders as I think about the painful jolts that would give my body, and I haven’t developed the cardiovascular capacity to run long distances without getting winded.
Rather, I began jogging a 0.3 mile stretch of nature trail at the back of my neighborhood. My joints can handle the shock absorption required to power walk on paved streets and, upon arriving at the short trail, I began jogging it. At first, I jogged it once then worked up to jogging it there-and-back. And eventually, I jogged it three times, clocking in right at a mile on the app I use to track exercise distances.
I couldn’t believe it. I’d jogged a mile! Me, the person who has had RA/RD for two decades: I was able to jog a mile! When I arrived home, I excitedly shared my accomplishment with my husband, saying “I haven’t run a mile since the 90s!”
It was a feat that I had not even set as a goal. I wanted to be in better shape, as I’ve found exercise helps reduce my disease activity level and because I want to approach mid-life and my older years with as much physical strength as possible. But, I’d never set a running goal. It just felt okay to keep going, so I did.
Jogging with RA feels like an impossible activity to do
While jogging a mile may seem like no big deal to many people, most of us with RA/RD know how impossible this activity can seem. There were many times over the past two decades where I never would have thought I’d ever again be able to do this.
I know some readers are not able to jog a mile and maybe feeling the urge to do whatever the internet-equivalent of throwing a magazine article on the ground is, just as I did all those years ago when reading about the marathon runner. I deeply relate to the frustration of having a body that can’t do what I wish it could.
Making peace with my exercise frustrations
And even though my RA/RD disease activity level is still low enough for me to be able to exercise, I’m working to make peace with that frustration now.
In March, I came down with COVID-19 and I was sick for nearly two months. I don’t know whether it is from being mostly horizontal for so many weeks, whether it is a hold-over symptom of the virus, or if it is a combination of both, but my muscles are still weak.
When I walk or bike a mile, my muscles tire quickly and burn as if they’d gone several times the distance, and then they cramp up at night. I’m ever so slowly trying to build back up to where I was in February, but I have a long way to go.
Believing in myself
However, I now know that it is possible for this 42-year old body with RA/RD to jog a mile. Just as I worked up to this accomplishment in spite of decades with this disease, I am confident I will once again achieve this feat in spite of contracting COVID.
What I've learned in the process
I have learned not to set timelines for myself, as both RA/RD and COVID-19 frequently defy expectations and have unpredictable trajectories. I have also learned not to fix ideas in my head about what I can and can’t do. There are so many factors that contribute to my body’s ability to be active. Some of these are within my control and many of them are not.
Maintaining grace, patience, and optimism
I am trying to have grace and patience when it comes to contending with the factors I cannot control, and maintain optimism and belief in myself when it comes to the aspects of my health that I do have some control over.
I cannot control when my muscles will once again feel strong, but I can control which thoughts I repeat to myself. Now, I am repeating, “I was able to jog a mile, and I will be able to do it again one day.” That thought keeps me moving forward.
How often you do experience an unexpected boost of energy?