For one runner with chronic illness, upcoming marathon is a chance to show what's possible

CATHY WURZER: Runners from all over the country are awaiting the Twin Cities Marathon this Sunday, especially after the event was canceled last year after unprecedented heat and humidity. Running 226.2 miles is an incredible feat for anybody. But for some struggling with chronic health conditions, it can seem, well, impossible.

When Molly Monk was diagnosed with the chronic condition known as POTS in 2019, she struggled to find her footing and identity while hit with bouts of exhaustion that sometimes kept her from doing even basic activities, like standing up to brush her teeth. And she got to wondering, could someone with a condition like hers do something like run a marathon?

She wanted to find out, and she helped start a group for people who thought there was no way that they could run a marathon either. Together, they plan to cross the finish line at the Twin Cities Marathon on Sunday together. Molly's on the line from Cedar Rapids, Iowa. Molly, thanks for taking the time.

MOLLY MONK: Hi. It's so good to be here with you.

CATHY WURZER: Well, likewise. I'm so glad you could take time to talk with me. I have to say, when I saw you had POTS, I thought, OK. This sounds kind of familiar. But how do you describe your condition to folks? How is it showing up in your day to day life?

MOLLY MONK: Yeah. So basically, what POTS is is when you go from laying down to standing up, your heart no longer understands what to do, and it drastically increases your heart rate. So what that ends up looking like for me is it used to be when I would stand up, I would not be able to see.

I would get really shaky or pass out or feel like I was just about to pass out. And that was probably every time I stood up for the first two years with this condition, that's what my life was like. And when your heart rate is at 160 or so just from standing up, you get pretty tired.

It's no longer that bad for me now, but I still deal with a lot of shakiness when I stand up, exhaustion, just feeling like, wow, I feel like I'm really, really having a workout when I'm doing nothing. So it definitely affects my daily life, but it's nowhere near as bad as it was at first.

CATHY WURZER: Wow. OK. So how did you decide that you wanted to run a marathon with this condition?

MOLLY MONK: Oh my gosh. So I had had POTS for several years at this point, and I was getting ready for a friend's birthday party when I was listening to an NPR podcast about how anyone could run a marathon. And then I-- well, to be quite honest, I just thought it would be funny after a couple glasses of wine to convince my friends that this birthday party to run a marathon with me.

I'm like, well, none of us really want to do this. I can't run that well. This will be funny. However, one of my friends pretty immediately said, yeah, you could do this. I've run marathons. No one thinks I can run them because he's a fat guy. And they're like, well, if I can do it, you can do it. And I won't do it this year, but my husband will run one with you.

And fortunately for me, his husband was my primary care provider. And Rob, his husband, had said, well, I've never seen anyone with POTS run a marathon, but let's train together and figure out how to do it. So that's really how it got started was a podcast, so this feels very appropriate to be on Minnesota Public Radio talking about marathons right now.

CATHY WURZER: I wonder, though, the fact that you were dealing all the time with this chronic exhaustion. I'm trying to get my head wrapped around your training regimen.

MOLLY MONK: Oh, yeah. Great question. Training for me probably looks different than what a lot of other people would do for running. However, though, I've learned that a lot of people without POTS can still benefit from a training plan like mine. So what my primary care recommended was to use the Galloway method.

And Jeff Galloway is a guy who's been doing this for over 50 years. And what he really believes deeply in is the run, walk method. And basically what it looks like for me is every two minutes, I take at least a 30 second walking break, and I will do that for the entire marathon. I've run three marathons at this point now doing that, and it turns out tons of people do this.

It makes running way gentler and easier, and you could still go pretty fast if you want. I don't, but it definitely makes training a lot less-- it feels less intense when you're doing it, and it helps me keep my heart rate in check.

CATHY WURZER: So did you find that maybe the movement and the training did something to maybe lessen the symptoms?

MOLLY MONK: I wish they did. Exercise is very helpful for POTS. That's what all of the studies have shown for people who have this condition. As long as you don't have any chronic fatigue syndrome issues as well, exercise will be really helpful.

I thought that I had it in the back of my mind like, man, maybe if I run a marathon and do this big achievement, then POTS will just go away. And it really didn't. But I will say that having such strong cardiovascular fitness now definitely really helps me on a day to day basis, because even if my heart rate is spiking, I'm used to that because I run all the time now.

And it doesn't feel as intense or just scary anymore. I'm pretty used to it. I think the real benefits are more on the mental side, knowing that I can still do these really intense physical things even with the conditions I have. It makes me feel a lot more free to just live the rest of my life.

CATHY WURZER: So tell me about this marathon training group, this group that you'll be running with. I love the fact that you're going to do that.

MOLLY MONK: It's been really fun. I think a lot of people talk about how they have the fear of missing out, and I think most people who are friends with me now have the fear of being included in things, because I've convinced a lot of people that, hey, if I can run, you should try running. We might have a fun time with it.

So it started off with my primary care provider, Rob Lancaster, and my roommate at the time. The three of us decided we'll run a marathon together. We did that last year. We tried to run the Twin Cities Marathon. It got canceled, but we ran our own one instead. And slowly, as I got more confident with running and started posting more about it, more of my friends thought, well, if Molly can run a marathon, I might be able to, too.

And it's not just the marathons. We do a thing called Relay Iowa where we run across the entire state in just a weekend. And I had some other friends who had chronic illnesses, a variety of different types. A lot of people who had post-COVID conditions who were realizing that, well, I might not be able to run what I think a runner should look like, but I could run like Molly, and that still counts.

So now, we've got a group of people who, for a variety of different reasons, either weren't interested in running a marathon before, thought they couldn't do it-- but we've got a group of people who trains together every week and plenty of people who are running with us who don't want to run a marathon, but still want to run and have a good time.

CATHY WURZER: So this group that will be running together on Sunday, do you have a plan?

MOLLY MONK: Well, loose plans. So I would say some of us want to definitely stick together for the most part. And then there are other people who have decided-- we all want to start off together. That's our plan. We're going to get into the Twin Cities. We're going to do the Expo together. We're going to start the race off.

We've decided that we're going to let people do what they want to do. Some of us are committed that we can stick it together no matter what, and other people are like, we've run so much now that I kind of want to see what it looks like for me on my own. But we're all going to start together. And eventually, once we've all crossed the finish line, we're going to get back together at the end somehow. So loose plans. We're going to see where it takes us.

CATHY WURZER: And what's the message you want to send to folks as they see maybe your group running together there for a while? I don't know if you'll have t-shirts or signs or anything like that. But what's the message you want to send to others who even are listening now, who think, yeah, I've got this condition, I could maybe do this?

MOLLY MONK: I think the biggest thing I want other people to feel is that your accommodations for a chronic illness are not necessarily limitations. Yes, they do limit your life, but your accommodations can actually be an invitation for someone else to join you.

I have so many friends that are now interested in trying running because being able to take a walking break and have a good time talking with your friends makes it seem like a fun thing instead of something that they could never do. So because I got sick and started running marathons, I've now empowered other people to have fun trying this thing with me.

And I never would have thought that I would find this beautiful silver lining with my chronic illness. Doesn't make having POTS worth it, but it does make it really special, and I think that's what I want other people to remember when they are living their own life with chronic illness.

CATHY WURZER: Hey. I wish you and the group well. Enjoy the race on Sunday. Thank you.

MOLLY MONK: Thank you so much. Have a wonderful day.

CATHY WURZER: You too. Molly Monk is a runner from Cedar Rapids, Iowa. She and her group are to run the Twin Cities Marathon this Sunday. If you see them on the route, cheer them on. Cheer on all the runners. Thanks for listening to Minnesota Now here on MPR News.