COVID-19 long-haulers struggle to reclaim their lives

Michelle Morrison was out of town when she realized her sense of smell had vanished. It was late last May, and Morrison, a flight attendant with a private aviation company, was five days into a seven-day tour of duty.

Out of the blue, with no nasal congestion or other respiratory symptoms, the shampoo in her hotel bathroom had no aroma. A whiff of eucalyptus essential oil left her nostrils stinging, but she still couldn’t detect any scent.

Not normally prone to illness and hyperaware of the threat of contracting COVID-19 due to the public-facing nature of her profession, Morrison knew immediately that something was very wrong. Her sense of smell, she says, “was just gone, and I started to panic. It was a scary, scary experience.”

Morrison immediately returned to her home in Marshall, and her doctor performed a COVID-19 test, which came back positive. Since she wasn’t experiencing fever, cough or other symptoms, she took leave from her job and quarantined alone on her 20-acre property. About two weeks later, after receiving two negative tests, she went back to work and resumed her normal activities.

But months later, it became apparent that COVID-19 hadn’t simply disappeared from Morrison’s life. When her sense of smell began incrementally returning after about three months, she found repulsive phantom scents replacing normally pleasant ones — coffee, for example, would smell like burning gasoline. Her sense of taste was likewise impaired, making all but the blandest of foods seem “horrific.”

Then, in late September, an abrupt bout of crippling fatigue grounded the normally energetic 40-year-old. “I had to take time off work because I couldn’t get out of bed,” she says. “It felt like I got hit with a ton of bricks.” A panel of medical tests excluded all possible causes other than COVID-19.

The long game

As the pandemic wears on, it’s becoming clear that Morrison’s situation is far more common than was initially thought. In the early going, the national Centers for Disease Control and Prevention reported that about one-third of adults who’d tested positive for COVID-19 still had not returned to their usual state of health after two to three weeks. But subsequent research suggests that prolonged symptoms may be more pervasive. A study released in January by The Lancet found that 76% of 1,733 COVID-19 patients discharged from a single hospital in Wuhan, China, were still experiencing at least one symptom, such as fatigue, weakness, muscle pain or sleeplessness, six months after the onset of symptoms.

Similarly, research conducted in Italy and the United States has found that anywhere from 50% to 80% of patients still experience symptoms of what’s come to be called “long COVID” many months after contracting the virus. And a global study published by MedRxiv in December reported that most “long-haulers,” as these patients are often labeled, had not resumed previous levels of job performance after six months, and many continued to display significant symptoms even seven months after becoming infected. At this point, little is known about what causes this disparity, though some evidence suggests that women, older people and those with more severe initial symptoms may be more likely to experience long COVID.

Whit Rylee, a builder who specializes in historic preservation, is one of those folks. The 57-year-old started feeling under the weather back in early October. He had just returned to Asheville, where he’s lived for 20 years, after an extended camping sabbatical around the Great Lakes. A free COVID-19 test from CVS came back positive, and not having yet secured a place to stay, he ended up quarantined for a week at a location provided by Buncombe County.

During his quarantine, says Rylee, he experienced fever, dizziness and general flu-like symptoms but no cough or respiratory issues. “I had about three nights that were rough,” he explains. “I assumed that in a week or two I’d start feeling better, because it wasn’t that bad.”

His condition didn’t improve, however. Instead, for the past four months, Rylee has suffered from chronic, debilitating fatigue. “I always thought that just meant that you’d get tired,” he says. “But what it’s like is that if you push yourself for more than an hour, you not only feel exhausted, you start feeling like you’re coming down with a bad case of the flu.”

He also experiences other common long COVID symptoms, he says, including a constant ringing in his ears, dizziness, weakness, loss of appetite, swollen toes and, worst of all, brain fog that makes navigating everyday tasks a challenge.

Unable to work, Rylee says managing his finances is a constant struggle. He counts himself extremely lucky to have found temporary living quarters in a friend’s guesthouse, and he says he’s received a small amount of emergency funding from local agencies that’s been helpful.

But his lack of permanent housing has excluded him from qualifying for broader financial aid, such as through the state’s Housing Opportunities and Prevention of Evictions Program. Meanwhile, Rylee says he’s frustrated by the limited assistance being offered to COVID-19 survivors by local governments, particularly the city of Asheville.

Lingering issues

Asheville resident Ashley M., who asked Xpress not to publish her full name to protect sensitive health information, has managed to hang onto her job since contracting COVID-19. But her intense long-haul symptoms first forced the 36-year-old software presenter to take a medical leave and then, when she was able to resume working, to pare down her hours from as many as 50 or 60 a week to part time.

Ashley, who has asthma but says she’s usually very healthy otherwise, tried to get a COVID-19 test in March after she started feeling feverish following a trip to Greenville, S.C. The provider, however, ran out of tests before her appointment, and she never received a positive diagnosis.

Nonetheless, she experienced the classic COVID-19 symptoms: cough, shortness of breath, impaired sense of taste and brain fog. After about two weeks, Ashley felt she was recovering and carried on with her usual work schedule and activities. But two months after she first became ill, things suddenly got weird — and scary.

“I started to get really, really sick,” she recalls. “It got to the point where I eventually wasn’t able to use my hands and couldn’t push myself up from bed or couch and could barely walk.”

The brain fog came back with a vengeance, too, and she developed a severe stutter — a heartbreaking development for someone whose livelihood depends on public speaking. “My friends said I was like a completely different person during that time when I couldn’t speak,” she remembers. “My parents said it sounded like I had had a stroke.”

Multiple doctors Ashley consulted at Duke University Medical Center in Durham, including neurology and infectious disease specialists, concluded that she’s a “presumptive positive” for COVID-19 and a long-hauler. Intensive speech therapy has improved her stutter, but it still recurs when she’s nervous or upset, she says.

And though she loves her job, she still can’t return to full-time work, because persistent exhaustion and brain fog make activities like reading and conversations extremely draining. “It feels like COVID ate a part of my brain,” she says. “I can’t think critically; I can’t think creatively. My brain is just very simple now.”

Overall, says Ashley, her condition is improving, but meanwhile her life has been turned upside down. “I can’t do the things I used to do — I can’t go hiking,” and even taking walks with her dog, she says, is challenging. “I’m having to live in an entirely different way because of this virus that so many people aren’t taking seriously, and it’s very frustrating and upsetting.”

Morrison, on the other hand, has been able to continue working full time since recovering from her bout of fatigue in September. But her life, too, has been drastically altered by the illness. Once a passionate and creative cook, she says, the continued impairment and distortion of her senses of smell and taste have robbed her of one of her life’s greatest joys.

She also struggles with the isolation of having symptoms nobody really understands. “It’s very lonely,” she notes. “The fatigue, the brain fog, the loss of taste and smell are all things that are very, very difficult to talk with other people about. Because they can’t see it, they’re not experiencing it, they think you’ve got to be making it up.”

Seeking validation

Morrison, Rylee and Ashley M. all say that seeking treatment for their long COVID symptoms has been a struggle and often discouraging. The doctors, says Ashley, “don’t know what’s going on. I get that, but it feels like they’re just dismissing us and what we’re feeling. They gave me a pamphlet on how to reduce my anxiety and be more mindful — that was their solution to me not being able to walk or speak.”

Yet all three concede that medical professionals are doing their best to deal with a new disease about which relatively little is yet understood.

“Everybody’s struggling, trying to figure out what the hell this is,” says Rylee, describing the confusion he encountered when he sought medical help for his long COVID symptoms.

All three long-haulers have found support and useful advice from fellow COVID-19 survivors through online forums. And though doctors have so far been unable to help Morrison recover her senses of smell and taste, she’s found support in a private Facebook group called COVID-19 Smell and Taste Loss that’s hosted by the British nonprofit AbScent.

Thanks to her interactions with this more than 21,000-member online community, Morrison says she’s started experimenting with “smell training.” The process involves regularly sniffing specific essential oils, such as rose, clove and lemon, to retrain the olfactory receptors to recognize common aromas. “The jury’s still out as to whether that helps at all,” she says, but at least it’s given her something to try.

Rylee, meanwhile, says he’s following a Parkinson’s disease diet high in omega-3 fatty acids to combat his brain fog, a regimen he learned about via a similar online community. Per the same source, he’s also taking supplements, including vitamins D and C, magnesium, niacin and zinc, to address his fatigue.

Ashley’s activity on a Reddit group for COVID-19 long-haulers led her to participate in national and international research efforts. She’s sent blood samples to IncellDx, a company led by Stanford University researcher Dr. Bruce Patterson that’s conducting research on the disease, and she took part in the above-mentioned international MedRxiv study of long COVID patients.

“I find that study so interesting, because it just validates what all of us have been going through,” she says. “This isn’t just, ‘Oh, you’re stressed out.’ … This is something that can last in your body for an undetermined amount of time.”

Too soon to tell

Dr. Steven Hauser, a hospital internist and primary care physician at AdventHealth Medical Group Multispecialty at South Asheville, has been following the COVID-19 outbreak since before it left China. “So I’ve been expecting this sort of pattern to happen for a while now,” he reports.

Fatigue and brain fog are commonly persistent symptoms, notes Hauser, who says he’s cared for numerous active COVID-19 patients as well as several with long-term COVID conditions. “But it’s hard to really get data on what to expect, because we’re only a year out from the first case reports of this virus from China,” he explains. “The treatments now are all supportive care” rather than offering a cure.

There’s evidence, says Hauser, that COVID-19 can cause long-term scarring in the lungs, and post-COVID brain fog could also potentially point to lasting damage. “But it’s still too soon to say how often this happens or what the prognosis is.”

There’s no harm in long-haulers taking vitamin supplements, he says, and he urges anyone with long-term symptoms to stay in contact with their doctors to document their experience. Those with cognitive issues should get tested by a specialist to rule out other possible causes, he advises.

Katherine Taylor, a physical therapist with CarePartners Home Health, has been working with COVID-19 patients since last fall to address a host of long-term symptoms, including gait and balance impairments, decreased activity tolerance, unstable vital signs, memory deficits, brain fog and changes in personality.

Although she’s unsure about how to treat taste and smell impairments and she refers patients with speech and cognitive issues to specialized therapists, Taylor says she’s seen strong improvement in post-COVID-19 patients experiencing weakness and fatigue. Therapies can include progressive walking and exercise programs, monitored aerobic conditioning and balance activities.

“With direction, monitoring and prescribed exercise from a skilled therapist, patients can absolutely make significant gains and improve functioning,” she says.

For her part, Ashley M. advises fellow long-haulers, in addition to pursuing any needed therapies, to take vitamins, eat a healthy diet, drink lots of water, take electrolytes and — most importantly — get as much rest as possible. She also encourages doctors to take their patients’ post-COVID concerns seriously, even if they’re unsure about how to approach treatment.

“People need to know that they were heard and validated and understood,” she emphasizes. “I think that’s what’s going to get us past this.”

Like Morrison and Rylee, Ashley says she’s trying to remain hopeful that she and other long-haulers will eventually recover, despite the current lack of clarity. “I feel deep down like this is just temporary, and it will get better,” she says. “But in reality we just don’t know.”