Running with rheumatoid arthritis is a long road. In October 2006, my running group – the six of us who were training together for our November 11 marathon – aimed to do 10 miles that night. I started running, but before I had gone five miles, I knew I was in trouble. A groin pull, I thought – but one so painful I couldn’t finish.

The next Sunday, I met the group for our scheduled 20-miler – the real tune-up before the marathon. But it was clear they were going to be running without me. I could hardly walk. I watched everyone take off, and I sat down and cried.

I had been preparing to run my first marathon for five months, but I had been dreaming about it since I was a child. I know it seems odd to have rheumatoid arthritis (RA) and run, and for most of my life I thought my dream was lost. I’m able to run now because of the medications I take, the fact that my upper body joints are affected more than my lower body joints, and the close eye my rheumatologist and I keep on my health. But I only have a limited number of years before I’ll have to stop running. So I’m racing the clock, in more ways than one.

Reclaiming my childhood dream was important to me because for years my life had been defined by arthritis. When I was a kid, I played every sport imaginable: softball, volleyball, basketball, gymnastics. All that came to an end one month before my 13th birthday when I was diagnosed with juvenile rheumatoid arthritis. 

Out of Control

In a few months I went from being a healthy, carefree kid to watching my whole world spin out of control. I had no say in all the things that happened to me: the pills, pain, needles, X-rays, limp, braces, splints, surgeries – and most painfully, the stares and the laughter of my schoolmates. I felt worthless and misunderstood. I wasn’t sure if I could handle one more day of the pain and bullying.

In a misguided attempt to regain some control, I developed anorexia. Then a bad flare forced me to go on prednisone, and I gained 65 pounds in three months. I responded by becoming bulimic, only to find out that, like arthritis and anorexia, bulimia was quick to control me. I would struggle with this disease for more than six years, all the way through high school and college.

What saved my life was connecting with other people who had arthritis and seeing them struggle with the same problems I had. As they helped me feel better about myself, I slowly began to recover from bulimia. It wasn’t an epiphany, and I still battle every day not to revert to that destructive behavior. But these days I get out of bed every morning and go to a job I love, helping people with disabilities find meaningful jobs. I work alongside colleagues whom I adore. I talk to friends and family who support me in everything I do, and I run with my buddies at least once a week. Quite a change from just five short years ago, when I prayed I would fall asleep and not wake up.

Now, I thought, I was strong enough to reconnect with my younger self and reclaim my childhood dream.

Getting Stronger and Faster, Physically

I started running again in 2003, when I began taking a biologic. I admit, going on this new drug was a little weird at first. For 10 years I woke up stiff and achy every morning. I was never sure what I was going to feel like on a day-to-day basis, so I tried not to make a lot of plans in advance. But after starting the biologic, I had tons of energy. I still had plenty of reminders that I had arthritis: I was giving myself two shots per week, had blood tests every six weeks, and still took handfuls of pills every day. However, within about a week of starting the biologic I entered my first race, a 5K Arthritis Foundation Jingle Bell Run. And I knew I wanted to aim for a marathon.

I joined a group of runners in a 26-week program sponsored by Sportsbackers, my local sports commission. We were all training for the same goal, and we quickly grew close, running together three or four times a week. My running partner, Fred, and I got to be good friends. He was 45 and training for his first marathon, too. When we first started, I couldn’t keep up with him. Then I started a new biologic and got stronger and faster, and was able to run at his pace. Fred knew all my hopes and dreams about this race – and my fears, too, of not being able to finish. So many people knew I was running this race. How would I face them if I didn’t make it to the finish line?

Getting Stronger and Clearer, Mentally

I kept training and dreaming for five months, and became injured. A sports medicine specialist diagnosed a probable stress fracture in my pelvis and said most people take at least six to eight weeks to heal. But the marathon was in three weeks! He suggested I do cross-training – stretching and spending two to three hours on a bike at the gym – and then come back three days before the race. Even then, I had only a 25 percent chance of being able to run.

I was devastated. I just wanted to give up. Why spend all that time in the gym for the next three weeks when I probably wouldn’t be running anyway? Why try for anything, when I was sure to be disappointed? I felt just as I had when I was a kid – worthless, a failure.

But then I began to think about what I really wanted. A quote from John “The Penguin” Bingham, a writer and marathoner, came to my mind: “The miracle isn’t that I finished. The miracle is that I had the courage to start.” I thought about everyone who could run a marathon but hasn’t. I could spend the rest of my life saying that was my dream, or I could accept where I was and do something about it. What I did now would be a reflection of how I faced adversity throughout my life. And I would rather try and fail than say, “I wish I would have done this.”

I resolved to do everything I could to be able to run that race, and I started spending hours each day in the gym. Three days before the race, I went back to see my doctor. If he said I absolutely couldn’t run, then I was going to walk the entire 26.2-mile course, even if it took me all day. During my cross-training, I diligently kept track of how long I trained, the time of day and what my pain felt like. And for the last three days before my appointment, I hadn’t felt any pain at all.

My doctor said, “I see you’re determined to do this. Go run a few miles and see how you feel.” So that night I went for a run. It was the first time I’d run since my injury, and it really hurt. But I was committed to starting the race in two days.

Reconnected on Race Day

Fred and I are standing at the starting line in a crowd of other runners. I’m more nervous and scared than excited. How long will I be able to run before it starts to hurt? I’m determined to finish, but how long will it take me? Will Fred have to leave me behind? The starting gun sounds and we take off. As we cover the course, I remember what my doctor said: “You can run some, but make sure you walk when you need to.” I’m setting a good pace for me, but I keep waiting for the pain. It doesn’t come.

Still, I slow down to walk around mile 17. I tell Fred to go on ahead, and he runs past me. I keep walking by myself. After about a mile, I see Fred’s wife. She tells me he’s not that far ahead – I can catch up. I start to run again, and in a few minutes I reach him. We decide then that we’re going to finish the race together, side by side. The last few miles drag by. Fred and I run, then walk; run, then walk. I feel like it’s never going to be over! It’s only when I cross the finish line that I let myself feel the excitement. My childhood dream has come true!

Beyond the Finish Line

I immediately started making plans for my next race, though I knew I’d have to take some time off to truly let my body recuperate. Running before my stress fracture was fully healed meant I wound up with a much longer recovery period – but it was worth it.

I approach both running and living differently now. Before I ran this race, I had a huge chip on my shoulder and constantly felt like I had to prove myself to everyone. But instead of proving to others that I could run a marathon, I wound up showing myself that I can make my dreams come true, whatever obstacles are in my way. I’ve learned how to face setbacks without letting them define me. I’m not just a runner with arthritis. That’s only one part of my identity. I know now I can relax and be myself – and achieve anything I set my heart on.

Fred and I are planning to turn our next marathon together in November into a real race. We’ve already agreed that we won’t wait for each other – it’s going to be every man for himself.  Even if I cross the finish line by myself, though, I’m not crossing it alone. The words and encouragement of my friends, family, co-workers and running buddies will be playing through my mind for every step of the 26.2 miles, helping me push myself go farther and faster. For all these years I thought I was alone in my struggle with arthritis and my life was essentially over. Crossing the finish line of my first marathon made me realize that this is just the start.

The author of this juvenile arthritis story, Ericka Umbarger, holds a master of social work and is a counselor at the Choice Group in Richmond, Va. She has served on a local Arthritis Foundation board in Virginia.