A COVID-19 long-hauler details his year of 'hell'

Yahoo News senior editor Ed Hornick has been fighting the lingering symptoms of COVID-19 for over 10 months now. Here, he shares his story.

I circled Jan. 23 on my calendar this year, noting in the box: “Coronavirus Hell Anniversary.” It sounds like Stephen King's next novel — but it’s actually the one-year anniversary of the chilly, damp day I walked into a London hospital with all the telltale symptoms of COVID-19 — only I didn’t know that yet. I would later be diagnosed instead with a viral chest infection and pericarditis (inflammation of the lining around the heart). Coronavirus was barely on the public’s radar at the time.

I was released hours later and told I'd be back to normal within two weeks. But instead, a year later, I'm at the center of a medical mystery that has stumped experts and left me with agonizing chronic pain, relentless fatigue, terrifying “brain fog” and an underlying fear that I may never get better. What if this is as good as it gets for me? I'm only 40 years old.

I am hardly alone. While there are no exact figures on how many people around the world are suffering from what is currently being called long COVID syndrome or post-acute COVID syndrome, some estimates put the number in the millions. Self-described “long-haulers” like myself have banded together, though, by forming online support groups and joining social media spaces in an effort to get answers.

Meanwhile, more post-COVID recovery centers are opening across the country, where patients can gain access to groundbreaking research and treatments. Unfortunately, COVID-positive or antibody-positive test results are required for admission to most if not all of these programs. Due to the lack of access to coronavirus tests early on in the pandemic, many long-haulers simply do not have any proof that they were sick with the virus, other than hospital discharge papers and doctor’s notes with the phrase “suspected coronavirus” written on them.

In the past year, I’ve made multiple trips to the emergency room, undergone medical procedures, taken inaccurate coronavirus tests, faced “gaslighting” by doctors, had medications stop working properly, struggled to maintain a normal working day, moved back to the U.S. so I could have help with daily life and better access to health care, and simply tried to understand why diagnostic tests were not picking up the ailments I was experiencing. I wrote about that journey in September.

"I feel like I’m being tortured"

Since that time, my condition remains at Status: Baffling. I have abnormal heart, gastrointestinal, and kidney functioning. I sleep with oxygen. Daily debilitating migraine headaches seem to be at a pain level 12; a noticeable tremor in my left hand comes and goes, and my leg muscles twitch uncontrollably. I get so dizzy from standing up that I nearly pass out. I’m often hit with a sense of jamais vu, the big sister of deja vu. I forget friends’ names and often repeat the same story in a conversation. “Are you having a ‘Golden Girls’ senior moment?” one of my friends jokingly asked me during one of the repeat-story performances. “Ugh, it’s this damn brain fog —I’m so sorry,” I replied.

Officially, the Centers for Disease Control and Prevention lists over a dozen symptoms. But talk to any long-hauler and you’ll find there are many more conditions, including hair loss, insomnia, gastrointestinal disorders, anosmia (loss of smell), phantosmia (phantom smells), mood swings, and rashes. Cognitive impact and profound fatigue, though, have been especially common for most long-haulers, who are now speaking out in greater numbers.

“I forgot my partner’s name,” artist Hannah Davis, 32, tells the New York Times. “I would regularly pick up a hot pan, burn myself, put it down and literally do it again. I forgot how to shower. I forgot how to dress myself. … I feel like I am basically on a 48-hour memory cycle.”

Air Force reservist Rick Dressler, 52, says just getting up is “absolutely frustrating,” telling the Baltimore Sun that when he wakes up, “the first thing I think is when can I go back to bed, which is utterly ridiculous.”

Miel Singletary Schultz, a 48-year-old woman from California, offers this bleak assessment in an interview with The New Republic: Long COVID syndrome is “so devastating, it’s had me on my knees begging God to let me die. I feel like I’m being tortured, or going through a long and terribly painful transition into something else.”

Overlapping Symptoms Mimic Other Disorders

For doctors who specialize in treating long COVID patients, life is equally as frustrating.

“Many of the patients are hitting their one-year mark in the upcoming three or four months,” says Dr. Zijian Chen, medical director of the Center for Post COVID Care at Mt. Sinai Hospital in New York City. “So it just beckons the question: When is this going to end?”

I spoke to Dr. Chen back in August, and then again in early February, to get a sense of how the diagnostics, treatments and research were progressing.

“I think the biggest thing we are learning is really how to look at a patient and use the standard way of evaluating patients and that way we can put them into the diagnostic protocols that we have,” Chen says. “And then from there, look at what we need to do for each patient in regards to kind of treatment and rehabilitation.”

One of the challenges for doctors, he adds, is trying to determine what is COVID-19-related and what are separate issues.

“What we’ve noticed is that there are a lot of patients who have symptoms and they just attribute it to COVID even though it may not be there — and that’s really hard to distinguish.”

Dr. Alfonso Hernandez-Romieu, a member of the CDC’s COVID-19 response team, refers to long COVID as “nebulous” because “it can overlap with other complications of COVID-19 illness, such as hospitalization complications and post-intensive care syndrome, or even multisystem inflammatory disorder.”

Doctors have seen striking similarities between the symptoms of long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — though they caution that further research is needed.

For its part, the CDC says in a blurb on its website that it is working to better understand long COVID and ME/CFS.

But doctors like Anthony Komaroff, a physician at Brigham and Women’s Hospital in Boston, expect to see “an increase that could generate as many new [ME/CFS] cases over the next two to three years as exist already in the U.S.”

The medical community also sees parallels between long COVID and other viral illnesses, including severe acute respiratory syndrome (SARS), Middle East respiratory syndrome (MERS) and Ebola.

“To this date, nearly six years after my ‘recovery,’ I continue to experience difficulty concentrating,” Dr. Craig Spencer, who contracted the Ebola virus in 2014, writes in an op-ed for the Washington Post. “Honestly, it almost feels as if the virus indiscriminately pulled a razor blade through my brain, severing old memories at random, and on its way out dropped glue in its tracks to make it hard to create new ones.”

Spencer offers three suggestions on how to better understand long COVID: recognition, resources and rehabilitation, and research.

“We urgently need more insight into how health care providers can best help long-haul covid patients,” he writes. “While there is much we don’t know about long-haul covid, there is still a lot that we already do know: That it is real, that the toll is huge, that dealing with it is daunting.”

"Citizen Scientist"

I know the desperation of wanting chronic pain to stop. When it’s chronic, it’s just always there — raging loudly in the background of your life. To help ease the pain, I have turned to meditation, natural remedies and even reading.

I enjoy a good mystery, so it’s only fitting that I find some comfort digging into the scientific research in an effort to help solve the whodunit. I still check into the Long Covid Support group on Facebook and BodyPolitic’s Post COVID-19 Support Group on Slack, mostly to reassure myself that no, I’m not really going crazy.

I’ve become what Dr. Francis Collins, director of the National Institutes of Health, calls a “citizen scientist.”

And, as it turns out, a research subject.

I took part in a long COVID study conducted by Patient-led Research for COVID-19 and the University College London, the results of which were released in December. “Patients with Long COVID report prolonged multisystem involvement and significant disability. Most had not returned to previous levels of work by six months. Many patients are not recovered by 7 months, and continue to experience significant symptom burden,” researchers conclude.

Other studies show the growing scale of the long COVID problem, including high rates of morbidity in the U.K. patients surveyed.

Slicing Through the Fog

COVID-19 has really changed me. Physically, I feel like an 80-year-old former smoker. Emotionally, I am like a rollercoaster ride you never really wanted to go on in the first place. Over the course of a year, I’ve had good days and bad days. The only constant? The all-encompassing fatigue and lack of cognitive sharpness. I feel like a dull butter knife in a drawer full of Ginsus.

Navigating the multitude of doctor's appointments in a week requires great scheduling and planning skills — all of which I used to have before brain fog took over. Writing also used to come easily for me; now, it’s hard to organize my thoughts and then put them down on paper.

It’s something Fiona Lowenstein, a journalist and long-hauler, knows all too well.

“When I was very sick and writing a lot, I wasn't doing much else. I was living off my savings and just pacing myself to an incredible degree,” Lowenstein, founder of the Body Politic COVID-19 support group, tells me. “So I'd usually sleep 12 to 14 hours a night, take two to three hours to ‘get ready’ in the morning and eat breakfast, and then write for two-ish hours until the brain fog hit and then rest for the day. Not very sustainable long-term, unfortunately.”

New York Times reporter Laura M. Holson details her fight through coronavirus-related brain fog, noting its impact on her job.

“On some days it felt as if words were swirling in my mind like letters in a bowl of alphabet soup being stirred with a spoon,” she writes. “I could see words forming, but I wasn’t sure what order they should be in. One afternoon in mid-June, it took 20 minutes to write a paragraph that, on a typical day, took me a quarter of that time.”

"The best you can do is the best accomplishment"

If this is a condition that just won’t quit me, then how do I manage to live with it? How do I begin to plan for the rising medical costs? For starters, I’m turning to others for advice.

I asked my longtime friend Andrea, who suffers from the debilitating autoimmune disease lupus, how she copes.

“Poorly? Lol,” she writes. “Not making light, but honestly, I do what I can and work on myself not expecting more or believing I’m doing my best.”

The 40-year-old attorney says dealing with an illness can be hard to process “especially when what you have is unknown and just emerging. I think the best you can do is the best accomplishment.”

Throughout history, conditions such as lupus, Lyme disease, ME/CFS, Dysautonomia, fibromyalgia, epilepsy, and scleroderma were initially dismissed by doctors as mysterious or even as a form of hysteria. Further research, though, would later prove the severity of these chronic illnesses.

“We discovered the biological basis of diseases such as epilepsy and dystonia, to name a few, which had been called ‘hysteria’ for centuries,” Dr. Avindra Nath, clinical director of the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, notes. “Long-Haul COVID is our calling and we should take the lead.”

Chronic illness sufferers can certainly sympathize with the moment long-haulers find themselves in.

“Careers will disappear. Friends will drop away. Marriages will come under strain. Finances will be problematic, and on top of that you’ll feel crappy or worse most of the time,” Cort Johnson, an ME/CFS sufferer, writes. “Many will embark on expensive treatments for which no proof exists – and mostly will not work. That’s almost too bleak of a future to confront, but it really should be confronted and for a very good reason. The time to take action is now.”

Columnist Ross Douthat, who has Lyme disease, offers this take in the New York Times: “One thing we’re definitely doing better with long-haul Covid than with Lyme, chronic fatigue syndrome and all their strange companions is taking the lived experience of long-haul patients seriously — probably because we have so many of them all at once — instead of treating them as weaklings or hypochondriacs.”

Not being believed by doctors for symptoms that current tests can’t measure and there’s little research to go on? Check. Fortunately, the entire scientific community appears to be focused like a laser on getting to the bottom of COVID-19.

For now, I — along with the rest of the long-haulers — will have to learn to cope with the symptoms, whether it’s “living inside the energy envelope,” counting the number of “spoons” that we have in a day, embracing the concept of “wintering,” or just simply “mentally reframing” the whole situation.

What’s in a Name?

A sizable financial commitment will also be desperately needed as coronavirus cases continue to grow, which will undoubtedly mean the number of long-haulers also increases. In turn, there will be a significant strain on global healthcare systems.

The Biden administration’s COVID-19 plan, in particular, focuses not just on vaccines — something I hope to get soon — but also prioritizes therapeutics and resources for long COVID.

But one of the first priorities should be getting the medical community on the same page, including standardized language, Dr. Chen says. For example, what’s the official name for this illness —long COVID syndrome, post-acute COVID syndrome, long-haul COVID syndrome, or something else?

“I think there’s enough now that we’re going to start standardizing that language, we’re going to start standardizing the diagnoses, what the appropriate treatment guidelines are — and that’s going to go a long way,” he says.

A name truly matters.

“That potentially long delay before a doctor can put a name and cause on a set of vexing symptoms may end up feeling to the patient like a bigger problem than the symptoms themselves,” science writer David H. Freedman writes on Medium. “The lack of a diagnosis can also keep helpful treatments out of reach.”

It reminds me of Dumbledore’s sage advice in “Harry Potter and the Sorcerer's Stone.”

“Call him Voldemort, Harry. Always use the proper name for things. Fear of a name increases fear of the thing itself.”

Right on.

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