Nearly two years after she first came down with COVID-19, Lori Hennings is still never entirely sure what might make her so exhausted she’ll need to retreat to her couch and sit limply, head between her knees.

She can usually take her dog on the one-mile round trip to the dog park near her house in Aloha, but that’s as far as she can go. Sometimes, if she picks up her cat and carries him just so against her chest, she’ll lose her breath. She’s back to working full-time as a natural resource scientist at Metro, but by the end of the workweek she’s mentally spent. Food still doesn’t taste right; she’s drinking a lot of Ensure.

As someone with long COVID—a condition that affects between 10 and 30 percent of those infected with the virus and in which health problems linger for months—Hennings is living with the pandemic’s biggest question mark.

No one really knows yet whether the life span of long COVID should be measured in months, years, or decades. What we do know: it most commonly presents in brain fog, extreme physical and mental fatigue, and associated depression and anxiety.

Now, as the pandemic inches closer to its terrible twos, medical researchers, caregivers, and the long haulers themselves are piecing together the way forward.

“My Facebook long hauler COVID group has genuinely saved my life—watching what other people are going through, being able to figure out how they are managing, if there is anything applicable,” says Shelly Prothro, a special education paraeducator from Vancouver, Washington, whose brain fog was so intense months after first coming down with COVID in December 2020 that she once forgot she was cooking, stepped outside, got distracted, and left a smoking pan of oil on the stove, charring her kitchen before she finally realized the ringing she heard was a smoke alarm.

Medical specialists are also studying the phenomenon, including in Oregon, where a long COVID clinic at Oregon Health & Science University has seen hundreds of patients since opening in March 2021. (Even that is just a fraction of the need in Oregon; with 300,000+ COVID cases, we can reasonably assume that upwards of 30,000 people are coping with long COVID.)

There’s no magic pill that can treat patients like Prothro and Hennings, says Eric Herman, the physician who leads the OHSU clinic. Vaccination has proven to help some people, but not everyone. (Hennings, for one, did feel better after getting her shot; her husband and their housemate, who also had COVID and are long haulers, did not.)

But after months of work, some ways to help long haulers are getting clearer, and most patients will eventually get better, Herman says. Doctors are recognizing that long COVID shares some traits—and possible treatments—with other, more established diagnoses, including chronic fatigue syndrome, fibromyalgia, and dysautonomia.

And recovery, it turns out, starts with your breath.

“The lungs don’t lie,” Herman says. “We train [patients] to see when their breath is telling them they are going too far. Once they understand where that is, they can maintain that level of activity safely and get stronger.”

Patients at the OHSU clinic see physical and speech-language therapists to build back physical and mental stamina—Herman likens the brain fog many experience to having so many windows open on your desktop that, eventually, your entire system slows down to a crawl—and therapy can help patients reboot, so to speak. Plans are also underway for in-person support groups in Portland, especially as COVID restrictions ease.  

Some patterns are emerging about susceptibility to long COVID, too, though not without caveats as to who is able to access health care. It tends to present more in women ages 30 to 65, Herman says, as well as those who have asthma, underlying mood disorders, and other significant chronic conditions. One other common denominator among his patients is that many had a particularly severe case of COVID, with more than six distinct symptoms during the first week of their infection. And while it’s still early, studies suggest long COVID is less common among breakthrough cases—not impossible, but significantly less likely, says Herman.

Hennings’s initial bout with COVID was so miserable she had hallucinations and was certain she’d heard her mother’s voice in a guest bedroom, or that her dog was scratching at the door to be let in, only to find the room empty or her dog on the couch. She had a racing heart, went from freezing to overheated to freezing again, and couldn’t stop a sharp, scratchy cough.

Being a long hauler is different, she says: “I am usually pretty nice. Now I’ve yelled at people, at my mother. I can’t stop myself from writing flamers. I’ve lost 35 pounds.” Even so, she counts herself as one of the lucky ones.

“It has gotten better for me. And even when it was still bad, every single day I’ve been grateful we were all still alive, because we could have been taken. It wants to kill you.”

Prothro, too, has forged her own way forward, changing her diet to emphasize anti-inflammatory foods and getting herself into physical therapy. The mental recovery is just as knotty, especially after a year spent trying to keep her sons, ages 8 and 5, on track with online school.

“I will forever be damaged by COVID,” she says. “But I know that I have to get myself to the absolute, utmost healthiest that I can, or it is going to be worse.”•