The enduring nightmare of being a COVID ‘long-hauler’ nearly 2 years — and 27 doctors — in
It has been nearly two years since my “mild” coronavirus infection cleared up and I began having symptoms of “long COVID.” In that time, I’ve undergone seven CT scans, five ultrasounds, two spinal taps, two X-rays, two lung function tests, one MRI, one echocardiogram and one sleep study. I’ve made three trips to the emergency room, been hospitalized once and had care provided by 27 doctors, nine nurse practitioners, three physician’s assistants and one therapist.
And here’s the brutal reality: I’m still not any closer to finding a clear solution to end this living nightmare.
One question continues to haunt me: Will I ever get better?
In an effort to answer it, I’ve sought out the advice of other “long-haulers,” dived into scientific research, visited medical clinics around the world and cathartically written about my fears and struggles. Now I’m documenting what it’s really like to battle this mysterious illness while trying to work a full-time job.
Long COVID — defined by the Centers for Disease Control and Prevention as a “wide range of new, returning, or ongoing health problems people can experience four or more weeks after first being infected with the virus that causes COVID-19” — has affected an estimated 100 million people globally, new studies show. In the United States, 22 million Americans are estimated to suffer from the long-term effects of the virus, according to the American Academy of Physical Medicine and Rehabilitation. There are more than 200 symptoms, including fatigue, brain fog, headaches, heart palpitations, shortness of breath and even hair loss.
While my lab tests come back mostly normal, my daily reality is far from it — with searing migraine headaches, astonishingly low energy levels, random muscle spasms, electric-like shocks in my joints and tissues, burning lung pain, fluttering heart palpitations, constant ringing in my ears, cognitive decline, sudden loss of strength in my hands, spastic tremors and vibrations, blurry vision, narcoleptic-like sleep impairment and frightening POTS-related fainting spells.
Early on, most doctors wrote me off as a “heartsink patient” — in other words, a hopeless case. The tests, I was told, weren’t showing what I was describing. Medical advice ranged from “You’re just anxious, stressed and depressed” to “I understand what you’re going through, but there’s really nothing I can do.” Or, as was more often the case, I was referred to specialists who also didn’t have any answers. It was one big game of pass the buck.
At one point during a hospital stay last year, I found myself wishing that I’d be diagnosed with something really major — at least then I’d be taken seriously and have an explanation for when people ask, “You look fine, what’s wrong?” Because when you have an invisible illness, half the battle is convincing people that the occasional smile on your face is not a sign of wellness, but rather a coping mechanism.
Health care strain
I’ve come to realize a fundamental truth about health care systems in the U.S. and U.K.: They are ill-prepared to properly handle chronic illness patients.
With the current systems’ understaffing and high burnout rates, it’s much easier to tell a patient that their symptoms are psychosomatic or behavioral rather than attempt to work in a true partnership to develop a solution, Dr. David Putrino, director of rehabilitation innovation for the Mount Sinai Health System, tells me.
“There’s nothing worse, from a clinician-ego point of view, than a patient who doesn’t get better,” says Putrino, who helps treat long COVID patients. “So when a patient shows up day after day and is just not better, the ego battle to say ‘Well you’re not better because you’re doing something wrong’ is really, really strong. A lot of clinicians in the country right now or in the world are losing that battle of ego.”
Luckily, things are changing.
With billions of dollars being poured into long COVID research in the U.S., new clues are emerging about possible causes and avenues to study. In October 2021 — more than a year since patients first started speaking up about the condition — the World Health Organization finally published an official definition for “post COVID-19 condition.”
According to the WHO, approximately 10 to 20 percent of patients experience post COVID-19 condition symptoms for weeks and months. Given the number of confirmed global COVID-19 cases — now over 383 million — the enormity of the situation becomes clear: It’s not just a public health crisis, but a global economic one as well.
“Long Covid is increasingly a significant headwind to the labor market, for businesses to get operations up and running, and, ultimately, for the broader economy to kick into high gear,” Mark Zandi, the chief economist at Moody’s Analytics, told CNN.
Help can’t come fast enough, especially as an increasing number of COVID-19 patients emerge as the Omicron variant surges. With daily case numbers in January shattering records, there are concerns about a “potential explosion” of long COVID patients in February and March.
‘Disability wave’
Dr. Greg Vanichkachorn, who studies long COVID at the Mayo Clinic in Minnesota, estimates that approximately 1.3 million Americans are out of work due to long COVID.
The struggle to handle long COVID symptoms is affecting an especially important workforce demographic.
“I’m seeing a lot of younger people with end-stage cardiac or neurological disease — people in their 30s and 40s who look like they’re in their 60s and 70s,” Vineet Arora, dean for medical education at University of Chicago Medicine, said in an interview with The Atlantic’s Ed Yong. “I don’t think people understand the disability wave that’s coming.”
That disability wave has the potential to cause major disruptions to businesses and health care systems — and ruin careers in progress.
Coping with the daily reality of long COVID — or any chronic, mysterious illness — is like riding a roller coaster blindfolded: You have no idea what is coming next, but you can sense when things are changing. Some days the pain is so excruciating that all I can do is curl up in bed and pray. Other days, I have decent energy levels and can function at nearly 60 percent.
It’s all so unpredictable and debilitating, which makes holding down a full-time job nearly impossible. I’ve had to pull back from my normal pace and turn down opportunities, and, as a result, I feel that I’ve fallen behind at work.
Every day, I meet more people just like me, whether it’s chatting on Twitter or reading posts on Body Politic’s Slack support group: long COVID patients desperately struggling to work and cope with brain fog — a phrase that doesn’t accurately reflect its true nature:
I’m 41 years old and often find myself unable to recall basic things such as familiar names, dates and events.
I lose my train of thought midsentence and struggle to get back on track.
I have trouble processing what a person has just told me.
I need to reread entire paragraphs because they don’t compute on first glance.
Thoughts race in my head and I find it difficult to organize them.
I’ve become a procrastinator for the first time in my life.
I’m short-tempered, anxious and extremely moody.
Long-haulers struggling with cognitive impairment and worry about going back to the office are often finding requests for remote work and workplace modifications turned down by their employers. Because long COVID affects everyone differently, companies are likely finding it difficult to issue a one-size-fits-all policy.
I am fortunate that my company allows for a flexible schedule and remote working. The thought of schlepping to an office every day is hard to fathom, especially as an immunocompromised worker due to the long-term effects of COVID-19.
Come-to-Jesus moment
Last July, I admitted to myself, and to my extremely understanding boss, that I couldn’t handle the demands of a full-time job and long COVID. I needed to step back from daily tasks to focus on becoming a functional human again. I could no longer put on a brave face during virtual meetings — the chronic pain had become too great to conceal. Something drastic had to be done.
I took advantage of a company-provided COVID-19 leave of absence and the Family and Medical Leave Act (FMLA) to address the issues. The answer was clear: No more running around to different medical offices and hospitals each week and no more seeing clinicians who didn’t know about long COVID. I needed an actual rehabilitation facility with specialists all talking to each other and formulating an integrative treatment plan.
But getting into such a specialized facility is not easy. Many of the facilities in the U.S. require either a positive coronavirus or positive antibody test. However, a large number of long COVID patients have nothing to show since testing was either nonexistent or extremely limited when they contracted the virus — or they weren’t able to get an antibody test until months after the acute infection cleared up. It is possible to have had COVID-19 and test negative for both the virus and antibodies.
So why the strict entry requirements?
“Federal guidelines require you to follow certain criteria for being a specialty center,” Putrino, of the Mount Sinai Health System, says. “If you’re a private practitioner — if you’re not in some center of excellence or specialty center — then you follow the CDC recommendations and guidelines, which is you don’t need to see a positive PCR test, you don’t need to see antibodies, because we know these are imperfect, inaccurate measures of whether or not someone had COVID.”
Available treatments for long COVID, meanwhile, are expensive, unregulated and often not covered by insurance companies.
“Part of the reason they’re expensive is that you have to spend a lot of time with a chronically ill patient,” Meghan O’Rourke, editor of the Yale Review and a chronic illness patient, said on the New York Times’ “Ezra Klein Show” podcast. “These doctors are like detectives. They have to spend a lot of time looking at the patient, looking at the labs, talking to one another.”
There are alternatives to medical facilities. Luxury spas and wellness centers around the world are offering long COVID care treatments that focus on learning how to sleep better, eat healthier and gain more energy. For those who can afford the hefty bill (some places charge $10,000 and up for a seven-night program), help could be a flight away to a zen spa in Thailand or former “Magic Mountain” tuberculosis sanatorium in Davos, Switzerland.
Finally, someone who ‘gets it’
With those high-end options out of the question, I still desperately wanted to find a one-stop shop that would help coordinate appointments, streamline care and develop a holistic picture of my health. I intended to fight the virus with every resource available.
After extensive research, I finally discovered a long COVID care program at Jamaica Hospital, in the Queens borough of New York City, that fit my needs. I remember that hot and humid day in July so vividly — it was the first time in over a year that I actually felt a sense of hope. I wasn’t expecting a miracle, just validation and a little help.
I was surrounded by doctors who believed me and wanted to assist, no matter how difficult the journey would be. It felt incredible to have my symptoms validated by clinicians, some of whom were battling long COVID as well. Finally, someone who just “gets it.”
Despite bad fatigue, I traveled to London a month later to meet with two long COVID experts in an effort to complement the treatment I was receiving stateside. It was a profound experience that led me to trying new medications, getting proper rehabilitation and learning effective coping strategies. I met specialists with a passion for getting to the bottom of this novel illness.
During a stop in Italy, I also discovered the incredible health benefits of yoga and meditation. I felt physically stronger, less fatigued and at peace after one session at a retreat overlooking Lago di Occhito, a beautiful lake nestled in the mountainous Molise region.
The struggle continues
But I was still struggling cognitively. I found it quite difficult to coordinate all the necessary documents and meet deadlines. I was required to submit a new doctor’s note every 14 days to work; to qualify for FMLA, I needed a clinician to fill out an extensive form and fax it back to the proper officials within a short time period.
I became the biggest pest to medical offices as I tried to get answers and coordinate the process — a draining experience for anyone, but especially a chronically ill person. It took a lot of patience and an assist from my overprotective Italian mother to get everything sorted.
I also looked into short-term disability aid. In July, President Biden announced that long COVID would now be considered a disability under the Americans With Disabilities Act. But I soon discovered that applying for — and actually getting approved for — disability insurance is incredibly difficult. I ultimately gave up on the process knowing that I’d most likely get denied. The last thing I wanted was more disappointment.
So now I wait and endure — desperately clinging to the hope that research quickly catches up to all of us chronic illness sufferers living at the edge of medical science.
