Keep Moving Forward.
My Story.
By, Christine Reed
“I am capable of so much even if it’s not easy. In fact, I am capable of more, because on top of what I’m doing, I’m doing it with POTS.
And so can you.”
In 2016, at 26 years old, I ran my first 5k. In 2017, I trained for and ran a half marathon. In 2019, I signed up and started training for a 50K (31 mile) race. It was scheduled for April of 2020. The race never happened. I was ready, but then Covid happened and all that work I’d put in the last 7 months, and on a grander scale, the last 4 years was taken away from me.
In August of 2020, I was diagnosed with POTS. I was 30 years old.
Now, you might be thinking this is one of those stories of a healthy athlete, taken down by sudden onset dysautonomia. We hear those stories in this community often. People with a list of athletic achievements, a love for their sport, identities wrapped up in what their body could do, suddenly faced with dizzy spells, rapid heart rate, and extreme fatigue.
This isn’t that story. This is the opposite of that story.
I lived the first thirty years of my life with undiagnosed POTS. I never knew why other kids seemed to run with ease, and I could barely make it one lap around the track. I didn’t know why I was always getting tagged but could never catch anybody else. I didn’t understand how anybody could enjoy sports or riding bikes. I didn’t realize that being dizzy every time you stand up isn’t a normal part of life. I didn’t know that the pounding in my chest was something I should be asking more questions about.
After tenth grade, I was so grateful that I didn’t have to participate in physical education any longer, that I promptly did little to no exercise for the next 8 years. The few times a friend invited me to go for a hike or do something active, I was ashamed by how “out of shape” I was, which only made me avoid exercise more.
Eventually I was so ashamed and unhappy in my body that I decided it was time to do something about it. I figured that if I made myself exercise, I would eventually get better at it.
I started with hiking. I had read a blog about the Appalachian Trail. People talked about losing weight, and getting in shape through hiking—they also talked about gaining a new perspective, changing their lives for the better, figuring out what they wanted to do with themselves. That all sounded pretty appealing to me at 23-years-old and freshly graduated from college. So, I decided I was going to hike the Appalachian Trail. If anything would kick start a healthier, fitter, able to exercise without embarrassing myself version of me, 6 months of hiking ought to do the trick.
The first week on trail I struggled my way up and down the rugged peaks of the Appalachians. My heart pounded in my chest, and I felt like I was choking, but that’s how I’d always felt exercising. That was the feeling I was hoping to train myself out of. My breathing was loud and labored, my movements anything but graceful. I stopped every ten steps on steep uphills and watched as other hikers passed me by. One even smoking a cigarette as he glided along the trail. I shivered myself to sleep on cold April nights, my muscles seizing and contracting from the cold and (I didn’t know it then—dehydration). I’d heard people talk about electrolytes, but didn’t really think I was athletic enough to worry about that. As the weeks progressed and summer approached, I sweat my way through Virginia. Drops of liquid fell from the end of my braided hair. My clothes were never dry. My muscles cramped and ached relentlessly. I could tell that I was getting a little bit stronger, only because I could now walk twenty or thirty steps uphill before stopping.
Other hikers who had started slow with me in the beginning, left me behind, having gotten their “trail legs” , a phenomenon that occurs in long distance hiking, where 15-20 mile days suddenly feel like no big deal after many weeks of practice. I had increased my aerobic and muscular capacity from hiking 5-10 mile days in the first several weeks, but not by much compared to those around me.
I told myself that I just needed to work harder. I just wasn’t working hard enough. I believed that, even when I arrived at camp late and exhausted, too tired to hang out with other hikers, or take side trails to beautiful views, doing half the miles of the hikers passing me every day, but suffering more than anybody else appeared to be doing.
Don’t compare yourself to others, I reminded myself. You’re getting stronger, slowly. You just haven’t worked hard enough.
After the Appalachian Trail, my legs started cramping from inactivity. Though the pain on the trail had been so much that I often couldn’t sleep at night, full time rest hurt too. A few weeks after I got home from my hike, I started running.
I had never voluntarily run in my life.
But I thought if hiking wasn’t enough to get me in shape, maybe running would be.
So, I started a couch to 5k plan. The first workouts involved 10 or 15 second running intervals. I thought I was going to die. But I stuck with it. Slowly increasing my running (read: jogging) capacity to 30 seconds, then 1 minute, then 2 minutes. Even after 650 miles of backpacking, the intensity of running was one of the hardest things I’ve ever done.
I knew that I must be on the right track because it was so hard.
Something in the back of my mind was asking, should it be this hard?
But I tried not to ask questions. I wanted to believe that all it took was a lot of hard work. And I was putting in the hard work. I was staying consistent, working my way through the running program. Waking up at 5am to get out in the sweltering pre-dawn of Arkansas in late August. I was suffering with purpose. And soon, I would be “in shape”.
I ran through the eight-week program, never actually completing a 5k distance. The program was time-based, and the last workout was a 24-minute run. Many people can run a 5k distance in that time, but the theory, I assume is that you would complete this program before running your first 5k event, at which, even if you hadn’t completed the full distance during that 24-minute workout, you could do it at the event. I hadn’t signed up for a 5k and sort of fell off the motivation train at the end of the program.
At that point, I moved to Denver, CO and had to go back to work full-time after my hiking sabbatical. Being on my feet all day working retail took a lot of energy, and I rarely felt motivated to run in cold Colorado weather. I saw my energy and self-worth plummet in those months, and I knew that running had been good for me, even if I wasn’t good at it.
So, I found a 5k race and signed up. I rebooted that couch to 5k program and started over at the beginning. This time, those 10 and 15 second intervals felt manageable, if still not easy. The familiar tightness in my chest, difficulty breathing, pounding heart, bright red face—these were just part of the running experience. I was beginning to accept that this was just how my body reacted to running. Even when my boyfriend told me to keep up when I obviously couldn’t, I thought someday I will be able to keep up.
A year later, I had dumped that guy and run my first half marathon. My pace had improved marginally, my body’s reaction to running hadn’t really changed. But I had grown accustomed to it. I had learned to breathe at a rate that didn’t cause me to choke. I had learned to ignore my heart’s attempts to escape my chest.
I started to think of myself as a person who runs, if not a “runner.”
In the next few years, I backpacked more. And I ran more.
I still looked around at other hikers and runners and thought, I’m not there yet. I’ll get there if I keep working on it. I was the only person I knew who could hike a 20 mile day or run 20 miles without stopping, but who seemed to be dying the entire time. I was almost never not suffering, but I could push through it like a real athlete.
In December of 2019, my partner agreed to go for a short run with me. He’s not a runner, but he dabbles. He’d even bought a fancy running watch, because he loves gadgets and he loves data. We started our watches and set off on a slow jog down the Cherry Creek trail in Denver. About two minutes later he said to me, “you’re breathing really hard.”
And I said to him, “this is how I always breathe when I run,” and I thought to myself, “thanks for pointing it out, jerk.” This level of defensiveness had been built up over my life for obvious reasons.
“We’re not running that fast,” he said.
I kept my eyes ahead and focused on my embarrassing loud and ragged breathing while louds sirens, bells and screaming sounded in my brain, drowning out everything around me. I saw red.
“What’s your heart rate,” he asked. His voice was kind, curious, and thoughtful. He loved me. He wasn’t mocking me or trying to make me feel ashamed. But unfortunately, he didn’t need to try. I could do those things all on my own.
I looked down at my watch’s display. It always showed my heart rate, but I never paid attention to it.
“185,” I told him.
He stopped in his tracks, looking at his own heart rate.
“Mine’s only 130,” he said.
“Well you’re more fit than me, duh!” I nearly screamed.
“You’re the one training for a race.” He calmly reminded me.
It was true. He was strong at climbing rocks. But he didn’t really do regular cardio exercise. If anyone should be crushing it in the cardio fitness arena, that would be me.
“Well—it’s always this high.” I said in a huff. I didn’t actually know if that was true, because I never paid attention. But my body felt like it always did, so it must always be that high, right?
I pulled up the fitness app attached to my watch and scrolled through dozens of previous workouts. 80-90% of the workout in Zone 5 they all said. Average heart rate 175 or 180. Heart rates regularly reaching 190 during a run.
“I think you should see a doctor,” was all that Ryan could say.
This was my turning point. It took 8 months after that conversation for me to get up the nerve to see a cardiologist. To ask the question, after 30 years – is something wrong with me?
Is there a “legitimate” reason for my body to behave in the way it does?
To be a constant disappointment?
To struggle when others seem to move through the world with ease?
When I got my diagnosis, I cried. Tears of grief and tears of relief and also tears of pride. For the first time in my life, I didn’t think of my body as something that I could fix through more work. It had a particular brokenness that could not be exercised away AND THAT WASN’T MY FAULT. It wasn’t a personal failing.
My cardiologist’s eyes were wide when I showed her my running charts and data. She said to me “people with POTS don’t run.” And I thought to myself, well I do. Taking on this diagnosis was a complicated mixture of emotions because I finally started to understand my physical experience. Everything I learned about the condition made me feel a little less crazy, a little less lazy, a little less like a failure. But I also had to recognize that I could never and would never exercise my way to a “normal” body. And that felt like the loss of something I had been working so long for.
It’s been over two years since my diagnosis. I still run. I still hike. Those things are in me now. And I feel the best in my body when I’m doing them. Sometimes I feel like I’m hiking and running away from my symptoms. If I stay active, I feel better. Even though sometimes I take it too far and have what I lovingly refer to as a “meltdown” but other POTSies call a “flare.”
I share my story as widely as I can, because I want to fight back against doctors who say things like “people with POTS don’t run.” Because I am proof that people with POTS do run.
And not only do I, but I need to, because it keeps me sane, it makes me feel the best physically that I ever have, and it reminds me that I am capable of so much even if it’s not easy. In fact, I am capable of more, because on top of what I’m doing, I’m doing it with POTS.
And so can you.
The Adventure Continues
Christine Reed is an author, long-distance backpacker and trailrunner. She has found so much joy and self-acceptance through moving her body in the outdoors. Her debut memoir, Alone in Wonderland, follows one of these journeys. You can find her on Instagram and TikTok @ruggedoutdoorswoman and read more from her at aloneinwonderland.com
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