Gretchen Schoenstein, who lives with multiple autoimmune diseases, has run 89 half-marathons. But at the height of the pandemic, lacing up her shoes to run just one mile might have been an even bigger accomplishment.

Gretchen’s fear of getting COVID-19, plus the fact that nearly all organized races were cancelled due to the virus, led her to take a running hiatus that was much longer than planned. Still, she found a way to persevere, get back to running and plan a new path forward.

We caught up with Gretchen to learn how she has navigated the pandemic — and to get her tips on how to create a workout routine when you have an autoimmune disease in these uncertain times.

“EVERYTHING CAME TO A GRINDING HALT”

Gretchen has lived with autoimmune disease and related conditions – including Hashimoto’s disease and inflammatory joint issues – since she was a kid. In 2006, when she was in serious pain and unable to walk, she received another autoimmune disease diagnosis: Sarcoidosis, which affects the lungs. She wasn’t much of a runner at the time, but her doctors told her she’d probably never run again.

She spent the next three years living with extreme caution — then she decided to prove her doctors wrong. She ran her first half-marathon in 2010, and ten more in the next year. This ultimately shaped a decade-long goal: 100 half-marathons in ten years. She crossed finish line after finish line, and started using her races to rally support for autoimmune disease research and advocacy by becoming an ambassador for an organization called Operation Shooting Star.

By February 2020, she had 89 under her belt, and was set to reach her goal of 100 by December 2020. Then the pandemic hit.

“Race after race was cancelled, then everything came to a grinding halt,” Gretchen says. “It was really tough to realize that I was going to have to let go of the culmination of many, many years of hard work. COVID knocked the wind out of life for me and so many.”

COVID-19: THE BOOGEYMAN OUTSIDE YOUR DOOR

Throughout the pandemic, one message has been clear: People with lung conditions may have more severe illness if infected with COVID-19.

“One of the long-term effects of sarcoidosis is lung damage,” Gretchen says. “I have rescue inhalers tucked away in my house, my car, my purse as well as a daily corticosteroid inhaler. I don’t trust how my body would respond if I got COVID. I was terrified.”

Gretchen has long turned to running to stay physically and mentally healthy. But all of a sudden, it didn’t feel safe.

“It felt like there was this boogeyman at the door and it was paralyzing,” she says. “There was this combination of the crushing weight of the reality of what we were facing combined with not having races, which have always motivated me to keep training. I ultimately didn’t run for four months, which is an extremely long time for me even with various flare ups over the years.”

BEGINNING AGAIN

To navigate this overwhelming new reality, Gretchen settled into a new routine: Yoga classes online, and walks and hikes when she felt she could maintain social distance on the trails near her California home. Then, in July, nearly four months after the pandemic started, she set her sights on a small new goal: She’d run one mile on August 1st. If she hated it, if it felt wrong, she didn’t have to do it again.

When she laced up her shoes, Gretchen felt the same giddy nerves and excitement she still feels before every race.

“My hands were shaking when I closed the door,” she says. “It felt daunting to be starting over — so I thought of it as ‘begin again. Again.’”

She set her watch to track her distance and started to run.

“I looked like a pinball, running every direction to avoid people and my lungs hurt the whole time,” she says. “But there were 20, 40 steps in a row where it felt so good, and I remembered that I love this. I missed that feeling. At the end of one mile, I felt like I achieved something. And I felt like I could do it again.”

By the end of August, she’d logged 13 miles. And doubled that number by mid-September.

“It reignited something in me,” she says. “It sounds cliché but it all came down to one step at a time. I used to say ‘every step is a gift, every mile an accomplishment, every finish line a victory.’ That’s still true. Finish lines look different now, but they’re still finish lines.”

Though formal competitions are still on hold, Gretchen still plans to eventually hit her goal of 100 half-marathons.

“While that adjustment was painful at first, I’m not inclined to give up and will find a way to still cross that 100th finish line, no matter where or when,” she says. “The goal hasn't changed even if the route and finish line have shifted a bit. I’m learning the art and science of adaptation and grit.”

BUILDING A WORKOUT ROUTINE WHEN YOU HAVE AUTOIMMUNE DISEASE

Gretchen shared some tips for shaping an exercise routine and keeping moving with autoimmune disease.

Be Kind To Yourself

During a year where nothing is normal, it's easy to be hard on yourself about not getting things done. But Gretchen has a different point of view.

“We spend a lot of time giving each other grace, but I think about it like the oxygen mask on the plane — you need to put on yours before you can help others,” she says. “I’m actually really glad I took those four months off. I didn’t want to run and I didn’t need to force myself to. Give yourself the same grace you would give to others.”

Listen To Your Body

Like many people who live with autoimmune disease, Gretchen may wake up feeling sick or tired or just not right on any given day.

“I’ve overcome a lot of things by just moving forward, like the energizer bunny,” she says. “But sometimes you need to change out your batteries.”

Knowing when to slow down and when to push through the pain is a delicate balance.

“I determine if I should take a rest day or push through using the same voice as when I’m running — the one that tells me if now is a good time to walk and check in with my body or if I should keep running,” Gretchen says. “I’ve gotten better at listening to that voice and it doesn’t steer me wrong. The key is to pause long enough to listen.”

Remember Every Step Counts

Whether it's a walk around the block or a 13-mile run, Gretchen encourages everyone to remember that every step counts.

“Just do what you can,” she says. “A few of those runs toward the end of the first month, I thought about going longer or faster. But I just stuck to a mile — and I ‘put that in the bank’ so to speak. I don’t want to feel totally exhausted at the end of every workout. Feeling like I could have gone further is what gets me to lace up my shoes again. And for that, I am so grateful.”

Create Your Own Finish Line

Setting small goals is Gretchen’s final key to sticking to an exercise routine.

“Races were my goals,” Gretchen says. “Without them, I felt rudderless — out on the ocean, not knowing where to go next.”

Setting smaller goals has helped her overcome this.

“I’ve started making daily or weekly goals,” she says. “Even if it's just 5,000 steps per day or a 15-minute walk. Being able to cross that proverbial finish line gives you that little ‘I did it’ moment. And that keeps you going.”

Read more about living with autoimmune disease in the time of COVID-19: Learn about managing stress from an expert and get an insider’s look at BRI’s fight against the virus.