Occasionally, if her energy levels are decent and it’s not too hot outside, Melanie can run a few miles at a slow to moderate pace. But afterwards, her legs feel deeply sore and fatigued—a sensation that lingers for weeks.

But that’s the least of her challenges. Her calf pain is constant, and she forgets simple tasks: “I leave the kitchen to get something from the laundry room, and by the time I take four steps, it is forgotten,” she says. Still, for the 41-year-old healthcare CEO, mother, and avid runner, this is improvement. Melanie (who has asked to go by her middle name) has suffered with long COVID for more than two and a half years.

After recovering from a mild COVID-19 infection in early 2020, Melanie attempted to run 3 miles. Afterwards, she was hit by a wave of fatigue that felt more akin to a draining—as if energy were being pulled from each cell of her body. The fatigue lingered for weeks. While she did not realize it at the time, she was experiencing Post Exertional Malaise (PEM), characterized by worsening symptoms 12 to 48 hours after activity—a common symptom of long COVID.

Over the next two-and-half years, her symptoms would include exercise intolerance, brain fog, muscle pain, muscle spasms, numbness, heat intolerance, and a drooping left side of her face. At one point, her brain fog grew so intense, she feared she would need to leave her job.

Long COVID and Women Runners

Nearly one in five adult COVID-19 survivors develop Post-Acute COVID-19 Syndrome (PACS),colloquially referred to as long COVID. It’s an umbrella term for a myriad of new or lingering symptoms after recovery from an initial COVID infection. While long COVID is new, prolonged illness following infection is not. In fact, folks have been chronically ill with post-viral ME/CFS for decades, with little research or recognition.

When it comes to long COVID, various false notions circulate – namely, that young and active people are less likely to develop it. But long COVID can affect anyone, and women runners are not spared. Long COVID patients include college athletes who can no longer walk, CEOs who have lost their jobs, and parents who have been denied disability benefits and struggle to support their families.

A University of Washington study followed 3,597 college athletes after COVID-19 infections and found that 4 percent had exertional cardiopulmonology symptoms (such as irregular heartbeats, dizziness, chest pain, and shortness of breath). Data also shows that women are significantly more prone to long COVID than men, and that women between the ages of 13 and 64 have higher probabilities of developing it than those 65 and older.

Importantly, when interpreting long COVID data, we must consider a stark limitation. Many women, and especially women of color, could not access COVID tests when initially sick. Without positive tests, these individuals have struggled to receive long COVID diagnoses and access medical care, which means they have not been counted in the data.

Mitigating Risk

The only way to avoid long COVID is to not get COVID in the first place: stay up to date on vaccinations and boosters, wear a mask when in close quarters indoors, practice social distancing and frequently wash your hands. But what happens if you follow those steps and still get infected?

“Do not push it too soon after recovering from COVID,” says Dr. Monica Verduzco-Gutierrez, a San Antonio, Texas-based physician who has become known as a leader in long COVID rehabilitation. An accomplished marathoner herself, Verduzco-Gutierrez understands the sick runner’s conundrum—the ceaseless pull of the training grind.

Still, she recommends waiting until you are symptom-free, and then slowly building back mileage and intensity. If symptoms appear upon returning to exercise, she suggests seeing a doctor. Signs to watch out for include abnormal chest pain or heart palpitations, unusual fatigue, and symptoms that exacerbate after exercise.

“Maybe you pushed through your run, and then you’re down for two days afterwards. Those are signs that a runner must listen to,” says Verduzco-Gutierrez. Resting as soon as possible could prevent a longer-term disability, she adds, and any runner with long COVID will confirm: a few weeks off from training now is better than months or years off later.

Navigating the Medical system

There are many runners suffering from long COVID. Take for example 32-year-old R.B., who once thrived on an active lifestyle—days spent running, swimming, and competing in trail running races. She faced some lingering symptoms following a March 2020 COVID infection,  but had begun to recover and was even training for the Yorkshire Three Peaks Marathon, a grueling multi-terrain event in the UK with 1,608 meters (5,275 feet) of elevation gain.

But in early 2021, she caught COVID again. Now, R.B. (who has asked to go by her initials) is too disabled to work. When she leaves her house, she uses a wheelchair. Navigating her new lifestyle is challenging enough, but it’s compounded by another obstacle: dismissive comments from doctors and other athletes—including one suggestion that she was not sick, but merely deconditioned.

“I ran up a mountain last month,” she says. “I don’t think so.”

Women and especially women of color commonly face medical gaslighting, or dismissal by medical providers. Gaslighting is not only maddening; it can be dangerous. For R.B. and other runners with long COVID, it can take the form of physicians who urge them to push through their symptoms, in turn making their conditions worse.

“Patients know themselves and their bodies best,” Verduzco-Gutierrez says. So, she urges patients to advocate for themselves as best as possible—keeping a record of their symptoms and lab results and bringing a list of questions to each appointment. To help long COVID patients navigate the medical system and other challenges, various groups and resources have arisen.

These include the U.S. Health and Human Services guide on long COVID as a disability, and support groups such as Body Politic and Long COVID Support for Endurance Athletes. At the very least, these groups serve as a reminder: long COVID is lonely, but you are far from alone.

Providing Support

Often, the experience of a runner with long COVID is one of isolation—of peering out the window and watching professionals hurry off to work; or other athletes run by, fast and free. In these moments, long COVID feels like a locked room with one small window. Outside, the world passes by. So, the best thing you can do for a runner with long COVID is to listen and believe them.

Despite her changed life, Melanie is grateful for her family. She finds joy in time spent with her daughter, who recently turned 5 and started kindergarten.

“I am grateful to be alive and not completely debilitated like others,” she says. “I am a lucky one.”

But, as a runner, R.B sadly expresses another perspective: “I don’t really feel hope,” she says. “There is significantly less joy in my life than there once was.”