May 8, 2023 -- Brooke Keaton, 42, of Charlotte, NC, has a back-up plan for the bad days. She calls them “her long COVID days” and when she has one, her husband knows she’s too fatigued to play with their two daughters, ages 12 and 5.
“Instead of heading to the park, we’ll do a movie night where we make popcorn and snacks and get in our PJs. I try and still keep it fun even though I can’t do many of the things that I used to,” Keaton said.
Keaton has had to make a lot of adjustments to her life since she was diagnosed with acute COVID-19 in December 2020. She recovered from a serious bout with the illness, but 8 weeks later she started having symptoms like shortness of breath and a racing heartbeat. Even doing the smallest tasks, like picking up her toddler, tired her out.
Keaton is one of millions of parents dealing with long COVID. In all, 11% of Americans who contracted COVID have symptoms of long COVID, according to the CDC. A recent study published in the journal Nature found those over age 30 are the most likely to get long COVID, an age group that’s also most likely to be in the midst of parenthood.
It’s left millions of Americans trying their best to balance childrearing with chronic illness.
Keaton has trouble taking her daughters to the park to play because she’s completely worn out by the time they get there. She even recently bought an inflatable pool for the backyard for those hot summer days when she’s too fatigued to take them to the pool.
Since her doctor diagnosed her with long COVID in September 2021, Keaton has lost her job working at a preschool and her health insurance. Now on expensive COBRA coverage, she spends most of her day seeing various specialists in the hopes of finding respite from her laundry list of symptoms.
“While much of the world has moved on from the pandemic and are living normal lives, for those with long COVID every day is still a struggle, said Upinder Singh, MD, division chief of infectious disease at Stanford University School of Medicine in California.
For Holly Hungerford-Kresser, 47, of Arlington, TX, brain fog has been among the most problematic aspects of long COVID. She tears up when she talks about its impact on her daily life as a parent.
She has to depend on friends to take her two teenage boys, ages 11 and 15, to school because she sometimes forgets how to drive. The associate professor of literacy studies at the University of Texas at Arlington now works remotely because the intense brain fog caused by long COVID has made getting behind the wheel confusing and, at times, dangerous.
“In a state like Texas, not being able to drive most of the time is a big issue,” she said.
Brain fog is a common complaint among patients. According to an article published in JAMA, nearly half of long COVID patients complain of brain fog or memory loss. It makes it hard for parents to help with homework, carpool, or even cook dinner.
While there is no treatment for the condition, Kristin Englund, MD, founder and director of Cleveland Clinic’s post-COVID reCOVer Clinic, said patients with cognitive decline are often sent to speech therapists who specialize in working with stroke patients. Those with brain fog may similarly need memory retraining.
“They are often our first line of therapy for helping these patients to develop tools to manage memory deficits,” Englund said.
Other treatments, like using a combination of the blood pressure medicine guanfacine and N-acetylcysteine (NAC), an antioxidant used for traumatic brain injuries, have also shown promise in some research. But for many patients, treatment has been elusive. Brain fog is among the most difficult-to-understand symptoms of long COVID.
Still, the most common complaint among 90% of Englund’s patients is intense fatigue.
For John Bolecek, a 40-year-old parent of two boys ages 4 and 7, it’s the long COVID fatigue that has caused him the most difficulty after contracting a mild case of the virus in January 2022 and then long COVID a few weeks later.
Bolecek once biked long distances and ran half marathons regularly. But today the resident of Richmond, VA, said his condition forced him to stop working in his job as a pedestrian planner for the Virginia Department of Transportation and can only walk about 2,000 steps a day before being hit with a malaise so intense it almost knocks him off his feet.
“I’m stuck on the couch almost all the time,” he said.
The malaise mimics the symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Researchers aren’t entirely sure why long COVID is causing it. But David Putrino, PhD, who runs Mount Sinai’s long COVID clinic in New York City, said a number of factors are likely at play.
In some cases, it’s dysfunction of the autonomic nervous system -- a part of the nervous system that controls involuntary functions like heart rate, blood pressure, respiration and digestion -- that may be driving fatigue.
Putrino said in other cases it could be mitochondrial dysfunction (the component of the cells that produce energy) or micro clot formation caused by COVID that depletes the movement of oxygen in the body.
Depending on the cause, patients may try a variety of treatments like autonomic rehabilitation, vagus nerve stimulation (using an electrical device to stimulate the vagus nerve), or supplements to address micro clot formation. Autonomic rehabilitation is a very specific form of physical therapy that reteaches the autonomic nervous system how to appropriately expend energy. It’s been shown in some small studies to have an impact on those with long COVID fatigue.
His patients are also taught to use “pacing,” which involves moderating activity levels to avoid sessions of extreme fatigue, that so many people are plagued with in his clinic. It’s a strategy that’s long been used for those with chronic fatigue syndrome.
“We do have a good track record of reducing the severity of fatigue in our patients, but we’re not yet able to get rid of the symptoms completely,” he said.
The other major symptom that many parents are facing is, not surprisingly, depression. Putrino said it’s not likely caused by the virus itself altering brain chemistry. More likely, it’s a sudden and completely unsupported transition into a life of chronic disability that’s causing widespread depression and anxiety. Treating their other symptoms and seeing a therapist to help comprehend what’s happened can help parents dealing with mental health problems.
“It’s bad enough when you’re only caring for yourself, but when you’re responsible for another little life and you’re dealing with an illness that no one seems to know how to treat and many still don’t believe is real, it can cause a deep depression,” said Putrino.
Although doctors and researchers are finding some treatments that seem to work, the lack of standard treatment guidelines makes it especially difficult for parents with long COVID and the doctors who care for them. In many ways, progress has been slow going, said Grace McComsey, MD, who leads the Long COVID RECOVER study at University Hospitals Health System in Cleveland. Doctors try to figure out what works for one patient through trial and error and then apply that knowledge to another. And many patients aren’t getting any relief at all.
McComsey said there is some hope that we may be able to prevent long COVID in the future, but research has been moving at a snail’s pace. “We’re ready to go, but everything is taking so long to get started,” McComsey said.
She said that some trials have shown that taking the diabetes drug metformin during the acute phase of COVID-19 may prevent some patients from getting long COVID. Immunization at least partially helps to prevent it, as well. Another study looked at people with long COVID and found that the antiviral Paxlovid given during the acute phase of the illness seemed to prevent it.
But prevention isn’t going to help patients like Keaton, Hungerford-Kresser, and Bolecek. They’ve been struggling with long COVID for years and nothing seems to help. It’s all the unknowns around the illness that keep them awake at night.
Will they ever be able to return to work? How will their chronic illness impact their children in the long run? Will we ever find a cure? These are the questions that have yet to be answered.