A Chronic Illness Upended My Life. Could I Still Run a Marathon?

While I was getting ready for a friend’s birthday party last year, a podcast came on about how almost anyone could run a marathon. There are few things I enjoy more than pestering my friends to do absurd things with me, so I spent the night trying to convince them that a 26.2-mile race could be fun.

I was probably the worst person to be making the case that running a marathon is an achievable goal for most people. In early 2019, I developed an autonomic nervous system disorder called postural orthostatic tachycardia syndrome (POTS). The condition is so debilitating that I can’t stand up to brush my teeth some days, let alone go for a long run. The only similarity I saw between myself and someone who actually ran marathons was that I couldn’t shut up about it at this party.

The whole marathon thing started off as a joke, but I quickly became serious about it. I was used to how my body behaved with POTS, but I wasn’t happy about it. Everything in my life—what I ate, what I wore, how I moved—revolved around coping with my symptoms. The boredom of managing my chronic illness made me miserable. So, even though I’d never cared about marathons before, I wanted to try running one because a podcast told me I could. I wasn’t searching for a cure. I was just desperate to find out if more was possible in my life.

At its simplest, POTS is a condition where your heart beats abnormally fast when you go from sitting or lying down to standing up. That heart rate increase can make many people with the disorder faint—or, more commonly, feel like they’re going to—whenever they’re upright. And it can also cause painful palpitations, fatigue, excessive sweat, migraines, severe chest and neck pain, a burning sensation in your feet, brain fog, and more.

Before the pandemic, a 2015 consensus from the Heart Rhythm Society estimated that at least one million Americans could have POTS. And now, many more do because a lot of people, including myself, develop the condition after having a virus. It’s one of the most common syndromes found in people with long COVID. But it can also be triggered by pregnancy, major surgery, head trauma, and other unknown factors. There’s no cure for it, though it does sometimes just go away on its own. Some patients benefit from medications like beta-blockers, but the main treatment options are a high-salt diet and cardiovascular exercise.

Even though it’s relatively common, POTS is horribly under-researched. Prior to the pandemic, many physicians didn’t even know it existed. Things are changing, and there are dozens of open clinical trials on POTS now. But we won’t see results for a few more years. When I was first diagnosed with the condition, all the research I could find on exercise and POTS focused on helping a person go from working out horizontally (for example, using a recumbent bike) to exercising while standing up. These programs take about three months and end after a patient can progress to “jogging if able.” But there’s very little information about what happens next.

I started running in the spring of 2020, when gyms closed during the height of the pandemic. I liked how running forced me out of my own thoughts, but I could only make it about a mile before I’d start to feel like I might collapse. It didn’t matter that my cardiovascular stress test showed I was in excellent shape—being upright wrecked my nervous system. There is plenty of research on how running a marathon can change the body of a person with a normal nervous system. Many training plans are built around having a predictable heart rate. None of this applies to people like me. If I couldn’t run more than a mile straight, how on earth could I even consider running a marathon?

One of the first people I convinced to run a marathon with me at that party was my close friend and primary care provider, Rob Lancaster, a family medicine nurse practitioner who also runs a lot of marathons.

Rob isn’t a POTS specialist, but he became well-versed in the condition by reading existing studies, using the clinical resource tool UpToDate, and working closely with his POTS patients’ specialists. While he understood my concerns about the lack of research on POTS and long-distance running, he wasn’t deterred. “If my patient wants to do something, my goal is to figure out a way to do it, as long as it’s not self-harming or dangerous,” he says.

I wasn’t searching for a cure. I was just desperate to find out if more was possible in my life.

Rob and I started a marathon training group with two of our other friends, and he observed how I ran. The main danger he saw was the risk of my heart rate being too high for too long, which could lead to inefficient blood flow and deprive my body of oxygen. Which, well, was exactly what was happening. My strategy had been to run until I felt lightheaded and began to lose my vision, and then walk and feel bad about myself until I could run again.

To change this, Rob encouraged me to wear compression socks, take extra Liquid IV hydration mix packets, and carry a hydration pack. He also recommended I try the Galloway method—a popular marathon training program that involves alternating between running and walking.

“If you’re already taking walking breaks when you feel like you’re going to pass out,” Rob said, “Let’s plan to take them before you get to that point.”

I was skeptical at first. Like a lot of people, I thought that it didn’t count as running if you needed to walk. I even thought that it would be insulting to ask “real” runners to run with me if I planned to take walking breaks. I liked our running group, and I was scared that trying the Galloway method would mean I’d have to go back to running alone. But what I was doing wasn’t working. I didn’t think I had another option besides giving up.

The night before a nine-mile trail run, I sent a very apologetic text to our group chat saying I was going to be taking a 30-second to one-minute break every four minutes, and I understood if it was a turnoff to anyone running with me.

Rob and my other friends were, of course, completely unbothered. They all said it sounded great.

Soon, I was a convert to the gospel of Galloway. I was stunned by how well it worked. I felt comfortable—strong, even—which I hadn’t felt in a long time. I could not believe that my body, the same body that couldn’t make it through a full mile without seeing black spots, was now running farther and feeling better. The breaks had helped me, and I felt like I could have easily done a few more miles. I was overcome with gratitude for what this small change allowed my body to do.

Still, there was a part of me that considered this a temporary solution. Every beginner running program says that as you get better at running, you’ll be able to run longer distances and take fewer walking breaks. But that conventional wisdom didn’t apply to me, since no amount of conditioning would make my heart beat normally. Even with a 30-second walking break every four minutes, a particularly brutal 23-mile run left me in a near panic attack.

On the next long run three weeks later, I decided to walk for 30 seconds every two minutes instead of every four. It worked. I felt comfortable and strong again. Because of this change, my friend and I ran a full unofficial marathon that day in less time than it took us to run those 23 miserable miles. The gratitude came back in waves with every step, and I cried tears of joy as we finished.

All of this training had been leading up to the 2023 Twin Cities Marathon, but officials canceled the race due to extreme heat. Instead, we ran another unofficial one on a much shadier course in Minneapolis. I don’t know what it feels like to have a crowd cheering for you the entire way, or to get a medal at the finish line. My marathons have been entirely without fanfare. But I know that running with people I love makes me feel happier than I maybe ever have.

I used to believe having POTS precluded me from being part of a running group. I had such a narrow view of who a runner was that I couldn’t see myself belonging at all. But I’ve learned that runners with chronic illnesses and disabilities are everywhere. The way we run can make the sport more accessible for everyone. A lot of my friends picked up running during the pandemic and were worried about being too slow to run with other people. But they were willing to try running with me because the planned breaks made it less intimidating.

Training for a marathon allowed me to move through the misery I felt—and sometimes still feel—about how POTS changed my body. Running makes it impossible to ignore my daily symptoms, but I’m no longer consumed by trying to manage them. Marathon training reframed my whole perspective. It showed me that my accommodations can be an invitation instead of isolation. Now my sorrow is an opportunity for joy.

When we were training, my friends slowed down to be with me. We talked through our heartbreaks, anxieties, and more on our long runs together. When we stopped to walk, we showed each other that needing a break—needing help—doesn’t have to mean getting left behind. My nervous system still sucks, but that simple solidarity healed something deeper in me.

Running a marathon didn’t take away the grief that came with my POTS diagnosis. But it gave me a way to practice letting others help me through hard things, and I found liberation in that practice. And now at my own pace, with my friends beside me, I’m running headlong into joy.