NOT GOING AWAY
As pandemic emergencies end, people battling long COVID feel ‘swept under the rug’
Lost careers. Broken marriages. Dismissed and disbelieved by family and friends. These are some of the emotional and financial struggles long COVID patients face years after their infection. Physically, they are debilitated and in pain: unable to walk up the stairs, focus on a project or hold down a job. Facing the end of the federal public health emergency in May, many people experiencing lingering effects of the virus say they feel angry and abandoned by policymakers eager to move on.
“Patients are losing hope,” said Shelby Hedgecock, a selfdescribed long COVID survivor from Knoxville, Tennessee, who now advocates for patients like herself. “We feel swept under the rug.”
The Centers for Disease Control and Prevention estimated in March that 6% of U.S. adults, or about 16 million, were experiencing long COVID, or ongoing health problems that continue or emerge after a bout of COVID-19. Researchers estimate that 1.6% of U.S. adults, or about 4 million, have symptoms that have significantly reduced their ability to carry out day-today activities.
While patients are no longer contagious, their health issues can stretch on and affect almost every system in the body. More than 200 symptoms and conditions, including fatigue and depression, are linked to long COVID, said Linda Geng, a physician who treats patients at Stanford Medicine’s Post-Acute COVID-19 Syndrome Clinic.
The severity and duration of long COVID vary. Some people recover in a few weeks, while a smaller number have debilitating and lingering health issues. There is currently no test, treatment or cure. There’s not even an accepted medical definition.
“When you don’t have any tests that show that anything’s abnormal, it can be quite invalidating and anxiety-provoking,” Geng said.
The physical and emotional toll has left some feeling hopeless. A 2022 study of adults in Japan and Sweden found that those with post-COVID conditions were more than twice as likely to develop mental health issues, including depression, anxiety and post-traumatic stress, as people without them.
“One of my friends committed suicide in May of 2021,” Hedgecock said. “She had a mild COVID infection, and she progressively had medical complications continuously pop up, and it just got so bad that she decided to end her life.”
According to a 675-patient study by the University of Southern California’s COVID-19 Pandemic Research Center, 77% of respondents who identified as living with long COVID said their condition limited daily activities such as going to school or work or socializing. One-quarter reported experiencing severe limitations.
Taking antivirals cuts the risk of developing long COVID in people who are newly infected. But for people already suffering, medical science is trying to catch up.
Julia Landis led a fulfilling life as a therapist before she contracted COVID-19 in spring 2020.
“I was really able to help people and it was great work and I loved my life, and I’ve lost it,” said the 56-year-old, who lives with her husband and dog in Ukiah, California.
In 2020, Landis was living in an apartment in Phoenix and received treatment via telehealth for her COVID-related bronchitis. What started out as a mild case of COVID-19 spiraled into severe depression.
“I just stayed in bed for about a year,” she said.
Her depression has continued, along with debilitating pain and anxiety. To make up for her lost income, Landis’ husband works longer hours, which in turn exacerbates her loneliness.
“It would be nice to be living somewhere where there were people around seven days a week so I wouldn’t have to go through days of being just terrified to be alone all day,” Landis said. Landis refers to herself as a professional patient, filling her days with physical therapy and medical appointments. She’s gradually improving and can socialize on occasion, though it leaves her exhausted and can take days to recover.
“It’s terrifying because there’s just no way of knowing if this is going to be for the rest of my existence,” she said. NEED HELP?
If you or someone you know is in a crisis, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or contact the Crisis Text Line by texting HOME to 741741.
This article is part of a partnership that includes LAist, NPR and KFF Health News. This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.