By Nicole Lyn Pesce
Long COVID-19 patients are quietly grappling with health and financial challenges that are impacting retirement plans
Two years ago, Kathy Spencer, a 58-year-old math teacher, motorcycle rider and mother of two, planned to guide middle school students through geometry well into her 70s.
But now Spencer, from Kensington, Conn., is facing the real possibility that long COVID will keep her from ever entering a classroom again. She still needs supplemental oxygen, and has difficulty speaking as a result of the hypoxia, or lack of oxygen reaching her brain. She suffers tremors in her head, arms and legs, which can be triggered by talking, and she experiences debilitating fatigue.
"We're meeting with our financial planner and our accountant to make some really tough decisions about how my husband and I need to change our financial goals and plans," Spencer said. "It's been a slow recognition that this isn't just gonna go away."
Spencer's idea of what her life would be like in her 70s has radically changed. She is one of the millions of people who have been suffering post-COVID conditions for weeks, months, or even years after their initial COVID-19 infections. This is commonly called long COVID, and the symptoms include difficulty breathing or shortness of breath; tiredness or fatigue; symptoms that get worse after physical or mental activity; and difficulty thinking or concentrating, sometimes referred to as brain fog. Some of these patients, often called long haulers, also experience damage to multiple organs, including the brain, heart, lungs and kidneys.
Studies estimate that between one-quarter to one-third of COVID-19 patients develop long COVID -- regardless of whether these long haulers had severe illness, mild illness or showed no symptoms at all during their initial COVID infection. So with 81.5 million COVID-19 cases and counting reported in the U.S, this suggests that more than 20 million Americans have experienced long COVID of differing degrees of severity. Other collected and analyzed data show an increasing number of Americans are being treated for long COVID.
Dr. Monica Verduzco-Gutierrez, a rehabilitative medicine physician in the long COVID clinic at the University of Texas Health Science Center at San Antonio, said in an interview that long COVID symptoms have been "devastating" to her patients' lives and livelihoods.
"For my patients dealing with long COVID, it is a full-time job to feel better," she said, listing the daily medications, breathing practices, physical therapy and cognitive exercises required just to "be able to function a little bit."
"That really can change the outcome of someone's life," she added.
A large study of more than 273,618 COVID-19 survivors published in PLOS Medicine found that the risk of long COVID was higher among older patients, with 61% of those over 65 suffering difficulty breathing, brain fog and memory loss, as well as muscle pain and fatigue.
MarketWatch spoke with a dozen COVID-19 patients, many of whom are over 50, who contracted the novel coronavirus in 2020 and are still suffering debilitating symptoms. Every one of them described chronic fatigue and brain fog of varying degrees that hurt their ability to work and to socialize as they had done before. One man lost his ability to speak and answered questions via email. Many can no longer focus long enough to read for business or pleasure, and doing chores around the house on a day when they actually feel good can cause them to relapse and spend the following day in bed. And many said that developing a chronic illness out of the blue has derailed their retirement plans, forcing them to drain their savings, or to drop out of the workforce before they were ready, which has complicated some already tenuous financial situations.
Indeed, in addition to the health issues long haulers are forced to deal with, there are also financial challenges, especially for the older sufferers. The best new idea in retirement for people dealing with long-term COVID symptoms is a sobering one: Take a look at your plans, and see if they need to change. Document your symptoms, and begin applying for financial aid if necessary as soon as possible. Spencer's financial advisers want her to apply for Social Security Disability Insurance (SSDI), and they warn that she will be denied "at least once, maybe two, three or more times, and that it's imperative that we begin immediately," she said.
Teresa Ghilarducci, a labor economist at the New School and director of its Schwartz Center for Economic Policy Analysis, has been worried about long COVID's impact on retirement since the pandemic first hit. "The first thing we asked ourselves was, how is this affecting older workers' retirement security?" she said.
"How is this going to affect their ability to earn enough money to maintain their living standard?" continued Ghilarducci, who specializes in retirement security. "How will it affect their downward mobility into poverty or near-poverty if they're middle-class workers? And what will happen to their physical and mental health?"
The initial answers are troubling. The Brookings Institute published a meta-analysis in January that suggested long COVID could be keeping more than 1 million workers from the labor force at any given time, accounting for upward of 15% of unfilled jobs. A recent Washington Post report also estimated that up to 1.3 million long COVID patients were too sick to go back to work And many of those who could still clock in have had to cut their hours; a survey of almost 4,000 long COVID patients published in the medical journal Lancet found that 46% had to work reduced hours.
'The brain fog is the worst'
Michael Sieverts, 60, was setting himself up for retirement from his job with the federal government before developing COVID in 2020. He was completing a yoga training program when he got sick. But now, even sitting up in bed or standing physically wears him out. He can only work a couple of hours each morning from home, propped up with a configuration of pillows.
"I wasn't expecting to be housebound this young, at this age," he said. "I wasn't expecting to never travel in my retirement, or to not ski, not play golf, not do yoga. It's frustrating just sitting back saying, 'Wow, I guess this is it.' Whatever it is that you thought you worked toward, you just had to let go of them all and put them aside."
Post-viral syndrome and fatigue is not a new human condition. People sometimes develop it after the flu, pneumonia or the common cold, or more serious infections like HIV. And some develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) afterward. But long COVID is shining a new spotlight on the long-overlooked and misunderstood malaise, and making it a more common feature of retirement.
A data analysis by the independent nonprofit FAIR Health for Morning Consult found that about 78,000 privately insured Americans were treated for a post-COVID condition between October 2021 (when federal health officials created a diagnostic code to identify long COVID patients) and the end of January 2022, alone. The Social Security Administration told MarketWatch that it has received about 27,000 disability applications since the beginning of the pandemic that include a mention of COVID in some way -- which was less than 1% of all annual claims. The agency did not say how many applications mentioning COVID-19 have been denied.
"COVID was a mass disabling event. We all got sick at the same time, so we were able to more accurately pinpoint where these seemingly mysterious lingering symptoms were coming from, because we had all been infected by this virus that everyone was talking about," explained Fiona Lowenstein, 28, who co-founded Body Politic's online long COVID support group while they were seeking relief for their own symptoms in 2020. Their upcoming book, "The Long COVID Survival Guide," features stories and advice from 21 fellow long haulers and experts.
"There is a desperate need for financial support, and some way to count long COVID cases," they added. "But a lot of people with long COVID are in underserved and marginalized communities who either can't access a long COVID diagnosis and can't access treatment options -- which are still relatively minimal -- or they still don't know that they have long COVID, because the public health messaging really isn't there."
But the impact of long COVID is being widely felt. Brian Whitson, 49, was an active outdoorsman who ran three businesses (including two nonprofits) in Anchorage, Alaska, before he was hospitalized for COVID in April 2020. "I have very patient employees," he said, noting that he's had to hand over the reins to his deputies for most of the past couple of years while he worked to rebuild his strength with an ever-expanding medical team that now includes a neurologist, a pulmonologist, a cardiologist, an ophthalmologist and a rheumatologist, to name a few.
"The brain fog is the worst," he said. "The worst day I can remember was the day I walked into my kitchen, and there was a strange woman standing there. I said, 'Who are you, and why are you in my kitchen?' And she said, 'I'm your wife of 18 years.'"
"I'm blessed that I'm my own boss," he added. "What would I do if I had been working for someone else?"
Andrew Gold, 65, an executive chef and culinary educator from New York City, was editing a cookbook and working on two other projects with some international pastry chefs in early 2020 when he contracted COVID-19. He developed chronic fatigue syndrome and brain fog so severe that he's had to pull out of those projects.
"I walk into a room and scratch my head, not knowing why I'm there," he said. "I've taken on several projects and given them back, because of the issue with concentration. I got to the point where I am hesitant to take on work. It's very demoralizing."
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