As the pandemic winds down for everyone else, long COVID survivors feel left behind

The world wants to move on from COVID-19. These long-haulers aren't able to

By Nicole Karlis

Senior Writer

Published March 28, 2022 5:40PM (EDT)

Doctors and nurses taking care of patients in ICU at hospital during COVID-19 (Getty Images)
Doctors and nurses taking care of patients in ICU at hospital during COVID-19 (Getty Images)

Leigh Jerome's daily routine looks very different than it did in the beginning of 2020. Jerome gets up at the same time every morning and tries to get some "early morning sun," followed by gentle yoga and breathing exercises. She proceeds to take a cold shower, take her supplements, and then her day starts — a day punctuated by long stretches of complete darkness.

"I take more supplements than you want to know, and they mostly target mast cell stabilization," Jerome told Salon. "Then throughout the day I have an app that sets a timer for me and I get up and rest for 15 minutes every hour, and that means completely dark — like, almost like if you had a concussion — to cut out the stimuli."

Before getting infected with SARS-CoV-2 on March 5, 2020, Jerome used to spend her days in her art studio creating immersive experiences for people who visited the art gallery she owns. That is no longer possible.

As an artist and scientist, she had boundless energy to create and move throughout her day, in addition to regularly lifting 30 to 40-pound weights. Now, she can only do three to five pounds.

"I haven't created anything for two years, which is mind blowing and devastating," Jerome said. "It's really only in the last six months that I've really experienced the stability and capacity to start reengaging with cognitive work, but physical work is still a little bit more taxing."

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There may be millions of Americans whose routines have been shattered as drastically as Jerome's due to long-term side effects of COVID-19. Studies suggest ten percent or more of those who contract COVID-19 suffer some form of "long COVID," shorthand for post-acute sequelae of SARS-CoV-2 infection. (PASC is the official diagnostic term for long COVID.)

In Jerome's specific case, her severely altered lifestyle is due to a constant need to manage all of the symptoms and conditions that have surfaced since getting sick with an acute COVID-19 infection, which became long COVID

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"I've been sick now for two years," Jerome said, noting that she has postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome, small fiber neuropathy, and insomnia. She's also been diagnosed with chronic fatigue syndrome and an autonomic disruption.

That said, Jerome describes herself as "much better" than she was a year ago, though she's still not back to her pre-COVID-self. And as the world tries to move on from the pandemic after two years, the uncertainty over whether she will ever fully recover weighs on her. 

"I don't know if I'm ever going to get better," Jerome said. "I've tried to be grateful, to maintain perspective, and I think I do a pretty good job of that, but on the other hand management is not the same thing as being okay."

Indeed, around the world, COVID-19 restrictions are lifting as the virus wanes in most jurisdictions — marking a transitional moment in which most people are eager to move on from the days of thinking about COVID-19. But for the estimated 10 to 30 percent of COVID-19 survivors who have had, or will have long COVID, it is difficult to move on when acute symptoms persist.

There have been advancements in knowledge about long COVID, and what lingering symptoms look like — for example, loss of taste or smell, brain fog, and inability to concentrate. Sufferers may also experience new heart and kidney conditions, excessive fatigue, and difficulty breathing. Long COVID symptoms vary from person to person and don't depend on age, the severity of the initial acute COVID-19 infection, or the quality of a person's health prior to infection.

"We understand more about the impacts, biologically, but we don't have all the answers to be able to say who becomes a long-hauler or who doesn't," Dr. Natalie Lambert, an associate research professor at Indiana University School of Medicine who researches long COVID, told Salon. "But what it feels like to me right now is that a lot of long-haulers feel like they're sort of stuck."

Lambert said she frequently receives emails from people who have had long COVID for over a year.

"They have tried every possible avenue to talk to every doctor that they could find and afford," Lambert said. "And they are still so sick that their lives have been severely impacted."

Lambert and her colleagues are currently working on research on how to get long-haulers relief from their symptoms as soon as possible. In February, Lambert co-authored a case study published in The Journal for Nurse Practitioners which described the recovery of two middle-aged women who, by chance, found that antihistamines greatly improved their daily functions after suffering from long COVID.

"We really need to get symptom management higher on everyone's agenda," Lambert said. "We need to figure out what long COVID is, why it happens and what it does — but there's this other huge need for people who are already long haulers, to try to figure out how to get them some relief and some functionality back."

 A long-hauler who asked to remain anonymous initially got infected with COVID-19 at the end of March 2020. She had what she describes as a "mild infection," which turned into two years of dealing with post pericarditis pain, dysautonomia, small fiber neuropathy, chronic insomnia, histamine issues, chronic fatigue syndrome and internal tremors and vibrations.

The long-hauler described the toll on her body as "enormous."

"For my first year, it was just 'don't die,' literally being in my bed, and not sleeping because I was really sure I wasn't going to make it," the long-hauler said, adding that there were be stretches of 14 to 18 days where she'd go without sleeping. She said she did not feel comfortable with the widespread lifting of restrictions.

"I basically just live in my home in my studio apartment and manage my symptoms on a day to day basis with supplements and medications," the long-hauler said. "I've seen about 45 doctors in the last two years."

On a "good day," she can get up, feed herself, maybe pay the bills on the computer — but she can't be in front of the computer for too long because of the stress and strain it puts on her eyes and brain.

Katherine Hansen, who was stricken with COVID-19 back in March 2020, is still seeing doctors frequently to find relief from her symptom at the University of Washington's post COVID-19 rehabilitation facility. Formerly a pilates instructor, now a real estate agent, she is no longer able to function "24/7" like she used to before the pandemic. Hansen sometimes suffers from extreme fatigue, and paralyzing muscle pain in her upper arm.

"I don't want to say I'm never going to fully recover, but I just hope to be better than I am today," Hansen told Salon. "It just would be nice to have more answers."

Read more on long COVID:

By Nicole Karlis

Nicole Karlis is a senior writer at Salon, specializing in health and science. Tweet her @nicolekarlis.

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Acute Covid Chronic Fatigue Syndrome Covid-19 Long Covid Reporting