Running and Chronic Illness: Between Two Worlds

Published May 18, 2023 12:11PM

Kristen Doornbos spends much time thinking about bodies. Both others’ bodies and her own. It’s necessary for her passion, running. And it’s a requirement for her job as a massage therapist and owner of Performance Recovery Massage in Jenison, Michigan.

Some might argue that all runners must be uniquely attuned to bodily sensations and adept at responding to them. A runner asks:when to push through pain and when to rest? Which pre-run snack to eat and feel fueled? And which clothing to keep a body warm, but not overheated, as the miles accrue? Though, 32-year-old Doornbos also lives with a chronic illness—multiple malabsorption and dysmotility conditions—which means her stomach doesn’t function properly. Her list of bodily concerns spans far beyond that of most runners.

“It’s kind of like putting together a puzzle every day to figure out how I’m going to make running, fueling, and everything else work with a digestive system that’s constantly working against me,” she says. These scattered puzzle pieces are familiar to any runner who manages a chronic illness.

Aside from juggling her health and running, Doornbos owns two businesses (Paper Trails Greeting Co. as well as Performance Recovery Massage). At first glance, one might think she embodies the image of health, fitness, and exuberance. Her social media is flanked with race-day photos; in most she flashes a magnetic, toothy smile. She owns a heavily Instagram-ed Chinese crested hairless dog (kind of like the naked mole rat of dog breeds), and sends her friends handwritten cards for notable occasions. Underneath this picture lies the logistical challenges and uncomfortable, sometimes debilitating, digestive symptoms that riddle her days.

“I sort of live in between the world of disability and of being able-bodied,” she says.

Between Two Kingdoms

Doornbos’s words ring of Susan Sontag, who first coined the phrase “kingdom of the sick” in her 1977 book, Illness as Metaphor: “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” she writes. “Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

A runner with chronic illness plants one foot firmly in the kingdom of the sick. Here lies uncertainty, where symptom flairs can last for months, and sometimes days or weeks are spent in bed.

Their other foot lands, not so much in the kingdom of the well, but in the kingdom of the “extremely well” and able-bodied. In this other place, athletes set alarms for 4 A.M. to log miles before the sun rises, compete for Fastest Known Times on treacherous trails, and run 26.2 miles for weekend fun. The athlete with chronic illness doesn’t so much drop in for a spell as perpetually straddle the strip of no-person’s land—the island floating between two kingdoms.

Devon Yanko, a 40-year-old professional ultrarunner, coach, and podcast host also inhabits this liminal place. She struggled with various autoimmune conditions, including Hashimoto’s, hypothyroidism, and a stomach condition, for several years before receiving a Lupus diagnosis in October 2022.

Receiving that last diagnosis was “emotional,” Yanko recounts, as “Lupus is way more serious” than her other conditions. “If I don’t take my medication for Hashimoto’s, I might have some symptoms. But, if I do nothing for Lupus, I could die in five years,” she explains. Through treatment, Yanko not only safeguards her ability to run long distances; she ensures her survival.

Finding the right treatment protocol has not been easy. It has involved various prescriptions, back-and-forth calls with her insurance company, and sometimes side effects that are more intense than her lupus symptoms (one medication “made me bipolar, like scary bipolar,” she recalls).

These days, she receives monthly infusions of a drug called Saphnelo. Though mostly covered by insurance, it’s still costly. (Yanko has spent about $8,000 on it so far this year.) But perhaps most glaring is the emotional burden of illness, especially on infusion days.

When Yanko gets infusions, she is surrounded by people with various conditions, including late-stage cancer. To protect her mental space, “I let infusion days be lupus days,” she says. “I can feel however I want to feel. I don’t need to be positive. Whatever I need to do on that day, I do.”

For Doornbos, managing her chronic illness has called for a similar trial and error approach. 2017 and 2018 were the hardest years. Unable to absorb nutrients, her body weakened, and her bones grew brittle. She suffered two pelvic stress fractures—the same injury, the same location, and exactly one year apart. In 2018, Doornbos underwent surgery to have a feeding tube placed in her upper abdomen and small intestine She hasn’t suffered a stress fracture since. “I’ve been so much healthier and happier with the tube than I was without it,” she says. “Is it fun all the time? No, obviously not. But not being able to run because your bones are too brittle, because you’re not absorbing nutrients—that’s not a good life to live.”

But You Don’t Look Sick

Too often, athletes with chronic illnesses must manage others’ unsolicited feedback, on top of the physical, emotional, and financial toll of illness. Latoya Shauntay Snell, an ultrarunner known for her body-politics activism, explains how race, gender, and body-size biases impact others’ expectations of how an ill person should look.

“Being a Black, queer woman means that we are oftentimes not believed when we speak up about certain injustices,” says the 37-year-old, who manages several chronic illnesses, including fibromyalgia and severe endometriosis. “Add on chronic illness to an already marginalized person, and they are further gaslit and unseen.” Soon after entering the fitness space, Shauntay Snell received backlash about her size, often in the form of nasty online comments. Medical professionals and fellow athletes claimed that, if she lost weight, her chronic health issues would subside. They didn’t.

“Even when I lost 100 pounds, it didn’t resolve or cure a single health issue,” she says. Instead, Shauntay Snell developed an eating disorder (anorexia nervosa) and struggled with suicidal ideation. According to the National Institute of Mental Health, people with chronic illnesses face higher rates of depression and other mental health conditions, due to the emotional challenges of illness. Handling others’ biases only intensifies this mental toll.

These days, Shauntay Snell is in a better space mentally. She credits her changed mindset around running–it’s a celebration of her body, and only meant to serve her. She also maintains weekly sessions with her mental health therapist–a routine she recommends to any athlete with a chronic illness. She still receives unsolicited commentary through social media, over email, and sometimes in person. These comments are often anti-fat and racially charged, and sometimes accuse her of feigning illness because she runs or “doesn’t look sick.”

“But you don’t look sick!” is a clichéd statement familiar to most chronically ill people. Many healthy folks have a mental image of how an ill person should look. They might think, surely, a runner who competes in ultramarathons (like Yanko or Shauntay Snell) or owns two businesses (like Doornbos) cannot be that sick. And perhaps this expectation is one of the most complex dynamics for a chronically ill athlete to navigate.

In some sense, Yanko is grateful to not “look” or “seem” sick. Which is to say, she’s grateful to be running. After all, many folks with lupus cannot exercise at all. Though, not “looking” sick doesn’t change the fact that Yanko is sick. It doesn’t change the fact that, some days, her symptoms prevent her from finishing or starting a race, or even getting out of bed. Nor the fact that, last March, she was climbing up a steep hill during a trail race, her lungs were burning, and it seemed that every cell in her body was screaming stop. She gasped out a curse word, to which her competitor responded, “You’re fine!” The truth is, she might not have been fine.

“I was trying to determine, is this just a sucky day of symptoms that I can slog on through? Or is this a sign that something is dangerously wrong?” she recalls. No matter how a chronically ill athlete looks, or the feats they accomplish, they still live with a chronic illness and the associated risks.

An uncertain path

Straddling the lands of illness and “wellness” looks different for each runner. But it always looks uncertain–there are ups, downs, and little means to plan for either.

In the fall of 2023, Doornbos hopes to run the Chicago Marathon. Though, she has already faced hurdles to starting the race. She had to attain permission to run with a backpack, which is not normally permitted at major marathons but is necessary for carrying her feeding pump to drip hydration into her body.

As for Yanko, just three months after her lupus diagnosis, she won the competitive Javelina 100-mile race, securing a golden ticket to the 2023 Western States Endurance Run. How to summarize this accomplishment? Words like “inspiring” and “against the odds” might come to mind. But such framing acts like whitewash over a scoffed wall; it covers the more complex and painful details. Before Javelina, Yanko was deep in the phases of post-diagnosis grief. Just one month earlier, she had to scratch from a race, due to a threatening symptom–pleurisy in her lungs. Channeling the right mindset for Javelina was an all-consuming effort. Later, in her lead-up to Western States, her health caused her to miss two races.

“I’ve always been a problem solver. If there’s a problem, I can fix it. But the chronically ill body doesn’t work like that,” says Yanko. “I’ve built routines that generally work for [my illness]. But sometimes it’s just a Tuesday, and I feel terrible, and there is no rhyme or reason.”

To weather this uncertainty, all three women attempt to reframe their expectations and not compare themselves to their competitors. “I want to tell other athletes with chronic illnesses that we do not have to perform according to other people’s standards or who they define as an athlete,” says Shauntay Snell.

The trap of positivity

Another oft-repeated comment that chronically ill people receive: “Just be positive.” The relationship between mindset and illness is a delicate one to discuss. After all, a growing body of research shows how emotional stress does play a role in chronic illness. To deny the role of stress in chronic illness is to deny how the mind and emotions interact with the body’s nervous system, in turn impacting all other body systems. Put simply, the brain and nervous system can create and intensify symptoms in response to all sorts of stressors – emotional and physical.

“For me, the number-one trigger [of illness flares] is high stress without a locus of control,” says Yanko. And yet, discussing this relationship is delicate. It could even be harmful if folks use it to negate the seriousness of chronic illness. Overall, while the mind-body connection plays a role in illness, this does not mean a person’s symptoms are “all in their head,” or that they can be fixed through a simple attitude adjustment.

Yanko enjoys listening to podcasts focused on emotional processing for chronic illness patients, such as The Cure for Chronic Pain. Meditation and stress mitigation techniques have helped her manage symptoms. Though, she clarifies, “My lupus is not going to go away if I meditate every day or cut out stressful tasks.” Most importantly, a healthy person telling her to “be positive,” as if positivity were a simple ask, will do nothing to improve her mindset or her illness.

Going forward

Doornbos, Shauntay Snell, and Yanko all set their sights on the future–by sharing their stories and advocating for other chronically ill athletes.

Doornbos’s experience running with a feeding tube drove her to think about other athletes for whom races remain inaccessible. She realized that, at most major marathons, winning wheelchair and para-athletes receive a small fraction of the pay given to their able-bodied counterparts. In 2022, she launched a petition to provide “Equal Prize Money for Wheelchair & Para Athletes” at major U.S. marathons. She wants to amass more signatures and, eventually, get people in positions of power to push for equal pay. She hopes her position—not completely able-bodied, but not a wheelchair or para-athlete either—will help her “bridge the gap between both worlds.”

At times, all three women consider themselves fortunate, because they can run and compete, despite the logistics and uncertainty involved.

“I don’t want people to use me as a poster child for all chronically ill people,” says Shauntay Snell. “We are far from monolithic.” She is grateful for access to medical care, support systems, and financial resources, and that she learned how to advocate for herself in medical offices. Without such privileges, she believes her fitness accomplishments would have been more difficult to attain.

Certainly, these women’s stories could never represent the myriad experiences associated with chronic illness. Nonetheless, they serve as a reminder: you cannot always see the health challenges a person is dealing with. Though, you can welcome them on days when they show up, and you can help them feel seen.