‘Long COVID’ is destroying careers, leaving economic distress in its wake
Before the coronavirus ruined her plans, Tiffany Patino expected to be back at work by now. She and her boyfriend intended to move out of a basement in suburban Maryland, where his grandmother lets them stay for free, so they could raise their infant son in a place of their own. Maybe get a new car.
But Patino got sick with COVID-19 more than a year ago. Instead of getting better, chronic exhaustion and other symptoms persisted, delaying her return to a restaurant job and swamping her goal of financial independence. After reaching what she calls her "hell-iversary" last month, Patino remains unable to rejoin the workforce. With no income of her own, she's exhausted, racked with pain, short of breath, forgetful, bloated, swollen, depressed.
At 28 years old, she can barely take her baby to the playground. "I go on a walk, and I have to use the stroller like a walker," she said. "Whatever life I have right now, it's more like surviving. I'm not living my dream. I'm living a nightmare."
Across America, many of the nearly 50 million people infected with the coronavirus continue to suffer from some persistent symptoms, with a smaller subset experiencing such unbearable fatigue and other maladies that they can't work, forcing them to drop out of the workforce, abandon careers and rack up huge debts.
Hard data is not available and estimates vary widely, but based on published studies and their own experience treating patients, several medical specialists said 750,000 to 1.3 million patients likely remain so sick for extended periods that they can't return to the workforce full time.
Long COVID is testing not just the medical system, but also government safety nets that are not well suited to identifying and supporting people with a newly emerging chronic disease that has no established diagnostic or treatment plan. Insurers are denying coverage for some tests, the public disability system is hesitant to approve many claims, and even people with long-term disability insurance say they are struggling to get benefits.
Employers are also being tested, as they must balance their desire to get workers back on the job full time with the realities of a slow recovery for many patients.
"They are suffering in dramatic ways, and in ways that have altered their lives and placed them in financial peril," said Harlan Krumholz, a cardiologist and scientist at Yale University and Yale New Haven Hospital.
The Washington Post interviewed more than 30 people around the country experiencing the sudden financial slide caused by the long form of the disease. They have been laid off and fired, quit jobs, shuttered businesses. They described falling behind on rent, mortgages and car payments. Some worried about losing their housing.
Depression and anxiety that are part of the brutal mix of long COVID symptoms are exacerbated by despair over vanishing income. From health-care professionals and small-business operators to government employees and warehouse supervisors, the patients expressed fears about never being able to return to work.
Many people with long COVID, often referred to as "long haulers," experience mild symptoms to begin with, then get stuck with months of chronic fatigue, shortness of breath, confusion and memory loss, erratic and racing heartbeats, radical spikes in blood pressure, painful rashes, shooting pains and gastrointestinal problems.
The government calls it post-acute sequelae of SARS-CoV-2, or PASC. The National Institutes of Health is spending $1.15 billion to study the syndrome. The symptoms sometimes subside, lulling long haulers into a false sense of relief, only to come roaring back after performing simple chores like vacuuming a living room or raking leaves.
Patino is afraid to carry her son for too long, worried she will drop him. She takes naps every day. If she did return to work as a server or host in a restaurant, she fears she would quickly get fired for missing work.
"I just feel so old. I feel so tired. When you are dealing with so many symptoms, every day it's like a lottery pick," Patino said.
Doctors treating long haulers say the symptoms cut across race and class lines.
"I have hundreds of patients who have had to take time off for long periods of time, quit their jobs, or get fired from their jobs, or take lesser-paying jobs" because of long COVID, said Janna Friedly, vice chair for clinical affairs at the Department of Rehabilitation Medicine at the University of Washington School of Medicine, where she and her team are helping long haulers build strength and return to work.
On top of the loss of income, some patients lose their employer-sponsored health insurance when they can't work. "I've seen patients who have gone from fully insured to not being able to come back and see me in clinic in the middle of our treatment because they have lost their job and no longer can afford to seek care," Friedly said.