And while many have been fortunate enough to recover from the effects of COVID-19, millions of people are still suffering from long COVID — that is, long-term side effects of the virus.
"This is a mass disabling event, and we in the U.S. are not prepared," Rachel Bean, a 34-year-old based out of Minneapolis who suffers from long COVID, told Yahoo Finance.
Long COVID symptoms can range anywhere from fatigue, "brain fog," and heart palpitations to autoimmune conditions, according to the CDC.
Long COVID sufferer Amaia Artica, a 42-year-old nursery school worker, poses for a photograph taken through blue plastic, in Pamplona, Spain, March 16, 2021. REUTERS/Susana Vera ·Susana Vera / reuters
“We know that after other viral illnesses, people can have a post-viral constellation of symptoms like this,” Dr. Wes Ely, co-director of the Critical Illness, Brain Dysfunction, and Survivorship Center at Vanderbilt University, said on Yahoo Finance Live (video above). “It can happen from the flu. We haven’t seen this magnitude of problems.”
In December 2020, Congress allocated $1.15 billion over four years to the National Institutes of Health (NIH) to study the prolonged health consequences of COVID-19.
“We’ve had [pandemics] before but never to the point where it’s been an absolute public health crisis where 10 to 20 million people in the United States are going to be suffering from this for months and years,” Ely said. “It’s something that our medical community and society at large really were not prepared to handle, this issue of long COVID.”
“One patient told me: ‘Dr. Ely, I wish that my hand was cut off so that people could see that something was wrong with me. But as it is when they look at me, they think I’m fine. And I’m completely diseased and burdened by these problems of long COVID, and everybody thinks I’m OK, and it makes it worse for me,’” Ely said.
He added that when long COVID patients “are silenced or feeling silenced, it causes additional pain and additional mental health problems already on top of the physical suffering.”
Long COVID: 'You literally cannot do anything'
Bean was first diagnosed with COVID in May 2020 during a testing event at her job where she worked as a case manager at a harm reduction facility.
“When I tested positive, I completed my 10 days of isolation at home from work but was considered an ‘asymptomatic’ case,” Bean told Yahoo Finance. “No one else in my household got sick. ... I started noticing symptoms in July 2020 and they have ebbed and flowed and swirled every day since then. I got tested on July 5. That test was negative and I’ve had only negative tests since.”
Lynn Ryan tested positive for COVID in March 2020 and was diagnosed with post-COVID syndrome in January 2021. September 24, 2021. REUTERS/Shannon Stapleton ·Shannon Stapleton / reuters
Bean has experienced a variety of symptoms which she said “really grinds you down” and is “much more flattening” than other forms of chronic illness. These include tachycardia, constant sweating, post-exertional malaise, digestive issues, brain fog, weakness in the hands, loss of fine motor skills, loss of taste and smell, insomnia, and costochondritis (inflammation of the cartilage that connects a rib to the sternum).
“When you have such profound exertion intolerance, there are days where you literally cannot do anything,” Bean said. “You can barely speak, you can't think, you can't enjoy things, you can't tolerate noises and stimuli, you can't even afford the energy required to care about the people you love. It's a profoundly dulling experience. And it's so tiring because everything is exertion: eating is exertion, responding to voicemails and emails is exertion, paying attention to my clients is exertion.”
Despite these challenges, Bean worked through it for months until finally going on medical leave from the end of January to May 2021. She worked part-time from May until September but missed 14 days of work during that time because of health issues.
“In late August, my agency asked me to resign as I was not eligible for FMLA to protect my job, I had been denied for short-term/long-term disability," Bean said, "and I was only working about 15-20 hours a week in a full-time role all summer."
According to Bean, she was denied short-term disability due to not enough clinical evidence to “support my doctor’s report that I was unable to work because no imaging, labs, or tests showed anything that demonstrated functional impairment.”
Anything that was deemed abnormal was attributed to her morbid obesity, she explained, while cognitive issues were said to be a result of her pre-existing depression and anxiety.
“Other than an elevated CRP inflammation marker and the wacky thyroid I had before COVID, there is no ‘proof’ of my illness beyond my reports,” Bean said. “I worry about what the implications of that might be and how easy it will be to dismiss people or make them ineligible for things like disability benefits, accommodations, and other supports."
As of July 2021, long COVID is considered a disability under the Americans with Disabilities Act (ADA).
A woman who lost her job waits in line to file for unemployment following an outbreak of COVID, at an Arkansas Workforce Center in Fort Smith, Arkansas, April 6, 2020. REUTERS/Nick Oxford ·Nick Oxford / Reuters
Bean is currently receiving unemployment through the state of Minnesota. But according to state law, if someone is “medically unable to work,” they are ineligible for unemployment benefits.
“So while I absolutely feel disabled by long COVID and absolutely feel unable to work, I am also sort of forced to pretend I can return to the workforce — otherwise I would have no way to pay my rent,” she said.
A study published in The Lancet that looked at long COVID patients from 56 different countries, including the U.S., found that 96% of the participants still had symptoms 90 days after testing positive, with the most common symptoms being fatigue, post-exertional malaise, and cognitive dysfunction. And, 45.2% had to reduce their work schedule as a result, while 22.3% had to stop working altogether.
Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, has described these symptoms as "severe" for people even months after they've "technically" recovered from COVID.
In the first chart, most long COVID patients experienced moderate symptoms that lasted over 7 months. The second chart shows that most of the participants who had not recovered from long COVID symptoms in less than 90 days had symptoms lasting for several months. (Chart: The Lancet)
“They’re still not able to work,” Fauci told MSNBC. “People have long-term and very serious consequences ... This is a real phenomenon. I, myself, presently, am dealing and helping a number of people who have a post-acute COVID 19 syndrome — they are virologically okay. The virus is no longer identified in them, but they have a persistence of symptoms that can be debilitating.”
Due to missed wages from leaving her job, Bean has resorted to raising funds through family and friends and cashing out her 401(k) from a previous job.
“The thing about long COVID is that you can barely hold in your mind what later today or tomorrow might require of you, so it's nearly impossible to imagine the future, say, three months from now,” Bean said. “What I can say is that I have been unemployed for two full months now and I feel no better or healthier or on my way to recovery than I did when I was working.”
White House Chief Medical Adviser Anthony Fauci waits to testify before the Senate Health, Education, Labor and Pensions hearing in Washington D.C. on November 4, 2021. REUTERS/Elizabeth Frantz ·Elizabeth Frantz / reuters
'Trapped in a body that just won't function properly'
Laurie Bedell, a 42-year-old from Pittsburgh, had a tragic experience with COVID when her entire family became sick after Thanksgiving in 2020.
Bedell’s mother had 12 COVID-related ER visits and hospitalizations and is still dealing with long-term problems. Her father, unfortunately, became severely ill and was taken off a ventilator in early January before succumbing to the virus.
Bedell began showing symptoms herself on Dec. 4 and told Yahoo Finance that she’s “been sick every second of every day since.” She initially struggled with a persistent cough, body aches, severe fatigue, and shortness of breath. She was also sleeping up to 18 hours a day and often found herself unable to get out of bed at all.
“I ended up with two lengthy hospitalizations — one in January and one in February — for high-dose IV decadron treatments,” Bedell said.
Dr. Ulrika Wigert checks on Brittany Kolkhorst, a patient with COVID at CentraCare Sauk Centre Hospital in Sauk Centre, Minn., on Nov. 23, 2021. (Photo by Jenn Ackerman/For The Washington Post via Getty Images) ·The Washington Post via Getty Images
By her second hospitalization, she began experiencing long COVID symptoms including tachycardia, inability to regulate body temperature, vertigo, dizziness, insomnia, blurry vision, COVID tongue, and heart palpitations.
Since then, Bedell has described her experience as “a literal nightmare.”
“I’m trapped in a body that just won’t function properly,” she said. “I was healthy and active and social before my COVID infection, and now I’m none of those things. I have not been symptom-free since December 3, 2020.”
Bedell estimated that she now suffers from about 80 different symptoms that vary in frequency and severity and include constant headaches, severe fatigue, post-exertion malaise, cognitive issues, and fluctuating blood pressure and heart rate.
"The life I had pre-COVID is gone," she said. "I feel like my life has just been on hold for almost a year. Just leaving my house is extremely taxing."
Her long COVID experience has also been a financial nightmare.
“My salary was the primary income for my husband and I,” Bedell said. “Losing my income has been catastrophic for us. I was lucky to have great employers that did everything possible to accommodate my lengthy illness but as I had no recovery in sight and my PTO ran out, I was laid off. I’ve had no income since receiving my last paycheck in February.”
Though she was laid off, Bedell was denied unemployment because it was determined that she didn’t meet the “willing and able to work” requirements for her state due to her health struggles.
“Bills don’t stop when you’re sick, so it was difficult to keep up with household expenses and medical bills and not fall behind,” she said. “We used savings and when that ran out, I cashed out my 401(k) because we had no other options."
Bedell’s health benefits were through her employer so once the CARES Act’s COBRA coverage ended, she ended up on Medicaid “because we don’t have the financial means to pay for a plan.” The family is also now receiving food assistance.
“Many of my diagnoses are progressive and so little is known about long COVID at this point that my future is uncertain,” Bedell said. “Since I've cashed out my 401(k), my husband and I have nothing for our future now. I honestly don't know what we'll do when we get older since our future savings is gone.”
Adriana Belmonte is a reporter and editor covering politics and health care policy for Yahoo Finance. You can follow her on Twitter @adrianambells and reach her at [email protected].
