When doctors become long Covid patients – and still aren’t believed

My job as an ER doctor is simple: I need to identify those that are critically ill among those who are in no immediate danger of losing life or limb.

Usually, a chief complaint of chronic back pain turns out to be an exacerbation of the aches and pains that come with age – but it can also be the only symptom of an aortic aneurysm about to rupture. To make such discernment, I have to see all patients that come across the ER’s threshold as soon as possible. It means a minute I spend with one patient may be a minute taken away from another.

In such an environment, I sometimes find it challenging to manage patients with a constellation of chronic symptoms. They’re least likely to die in front of my eyes, yet often the most demanding of my time. My patience can run short, especially if my bladder is full or my stomach empty. But the pandemic has challenged my dichotomous view of patients as either “sick” or “not sick”.

I first saw my long Covid patients in April 2020. I tried to reassure them as best as I could that their myriad of symptoms would fade with time. “For some people, it takes a bit longer,” I’d say, not knowing that what ailed them was not an acute phase infection, but their bodies’ reaction to it.

Since then, I’ve seen countless long Covid patients in the ER. Some of them are young and at the peak of their health – former cyclists and marathoners. Others are frail and have comorbidities that make coping particularly difficult. Some are well-educated professionals who understand the potential pathophysiology of their ailments better than I do. Some are anti-vaxxers fearful of the healthcare system without being able to articulate why.

And yet I see one commonality: the look of complete bewilderment in their eyes as they ask: “What’s happening to me? Why am I not the same any more?”

The turning point for me came last year, when a co-worker developed memory problems following a Covid infection. At one point, her symptoms became so severe that she could no longer find her way home. After each neurologist appointment, she’d recount her experience of being dismissed. “They think I’m depressed. They say nothing is wrong. Maybe they’re right. Maybe I’m just crazy.”

In the years I’ve known her, she’s never once struck me as someone who was not fully in charge of her emotions or faculties, and I told her so.

Unfortunately, many others now find themselves in similar predicaments – and they’re learning the medical community does not spare its skepticism, even towards its own.

In the spring of 2021, Dr Lee Bar-Eli and her children gathered in the family den of their Houston home. Excited to be done with school, Naomi asked: “Mommy, can you play tag with me?” Before she could answer, her seven-year-old son Elijah interjected: “Don’t even ask! She used to play tag. She doesn’t do that any more!”

It was then that Bar-Eli realized her daughter Naomi, then five years old, probably had no memories of the active, energetic person she had once been. Unable to hold back her impending tears, she got up, but she felt her body rebelling as soon as she did. Her heart raced, and she found herself once again gasping for air.

Still, she managed to make it to the adjacent room before breaking down.

“That was the lowest point for me,” she recalls.

Dr Lee Bar-Eli and her children. Photograph: Jacqueline Schaefer

This new life of afternoon naps and never-ending medical appointments was distinctly the opposite of the life her parents envisioned for her. Born to a Jewish family who had escaped the Holocaust through both luck and their own industriousness, Lee was taught at a young age to keep her head down and aim high. Her father embodied these values; as a molecular biologist, the elder Dr Bar-Eli dedicated his life to researching metastatic melanoma.

Lee preferred human interactions to the cold sterility of a lab bench. She became a family medicine physician because the idea of building lifelong relationships appealed to her.

After she married and had children, she cut back her practice hours, but there was nothing part-time about the way she looked after her patients. She’d block off her lunch hour to have the kind of difficult conversations that could not fit into a 15-minute appointment slot. On her days off, she’d call insurance companies and various services to arrange care and advocate for her patients.

But then came June 2020, and everything changed when she tested positive for Covid.

She developed a cough, fever, headache, abdominal cramping, nausea, diarrhea, congestion and body aches. Soon, the rest of her family fell ill too. Not wanting to tax the already overwhelmed healthcare system, Bar-Eli did not go to the ER even when her oxygen levels fell below normal. She treated herself at home with an oxygen compressor she had purchased for her parents.

The majority of her symptoms resolved by day 10, yet her heart continued to race even with minimal exertion. Now, simple activities like going up the stairs of her house or getting up from a chair made her feel as though she was running on a treadmill.

Alarmed, Bar-Eli sought out a cardiologist who put her through a battery of tests yet found no explanation. From then on, she was spending up to 30 hours a week going to physical therapy, showing up to specialist appointments, and fighting with insurance companies on the phone – yet none of it compared to the stress of getting through to her doctors. It baffled her that they would attribute real documented symptoms such as abnormally high heart rate to psychological factors or her weight.

“Not only did I become a patient, I became a patient who wasn’t always believed. I found out first-hand how painful that is.”

According to a recent survey published by the National Center for Health Statistics, about 14% of all US adult populations have experienced post-infection symptoms.

Katie Bach, a senior fellow at Brookings Institution, estimates that 4 million Americans are currently out of the workforce due to long Covid. These figures illustrate the pandemic’s lasting impact on the country as a whole, yet the afflicted continue to face willful ignorance and denial.

On 19 July 2022, the House select subcommittee on the coronavirus crisis gathered its members and witnesses on Capitol Hill to discuss the health and economic consequences of long Covid. One of the most compelling testimonies came from Dr Monica Verduzco-Gutierrez, the chair of rehabilitation medicine at the University of Texas Health Science Center.

“In August of 2020, I saw my first patients with long Covid, and the patients keep coming. Some patients are waiting upwards of six months to be seen,” she said. Yet some don’t make it when their long-waited appointment arrives, “not because they got better, but because they got worse. They lost their job and healthcare insurance, or they’re so disabled they can’t get out of bed.”

Since the pandemic, Verduzco-Gutierrez expanded her practice from primarily treating brain injury patients to caring for long Covid patients. She now runs two clinics that offer comprehensive care to those suffering from post-acute sequelae. Many of her patients include public servants and frontline workers.

One of them happens to be Bar-Eli, but it was by no lucky accident that they found each other.

Frustrated by her experience of not being believed, Bar-Eli began advocating for herself in the same way she’s done for her patients. She reached out to her network, and a mutual friend introduced her to Verduzco-Gutierrez. Together, they embarked on a long and arduous journey towards recovery. Under her new doctor’s guidance, Bar-Eli went through rehabilitation, which involved doing everyday activities while wearing monitors. Seeing exactly at what point her heart rate jumped and oxygenation level dropped taught her to pace herself and set limits.

Verduzco-Gutierrez explains why this method works. “[The approach to] traditional physical therapy is work out harder, work out more. And that’s not going to be helpful in some of these patients.” Her advice: “Prioritize the activities that you have to do. What’s your energy window? When do you have most of your energy? What can you do then? What happens when you start doing too much? If you follow your heart rate, oh look, your heart rate starts going up when you’re 30 minutes into this activity. And if you go to an hour, then you knock out, so maybe you stop at 25 minutes.”

Her methods also involve teaching patients how to breathe properly. After Covid, many patients develop paradoxical breathing in which, instead of moving down and expanding the chest cavity during inhalation, the diaphragm moves up and constricts the lungs. Correcting such aberration takes time and patience, yet the incentive spirometer, a small medical device used in this process, is relatively inexpensive and widely available.

“I just remember having this very specific thought,” Bar-Eli notes. “To get to the point where someone gave me a plastic tube that costs dollars, I have seen pulmonary five, six times and gone through $30,000 worth of testing.” She couldn’t understand why it had to take seven months.

During her testimony, Verduzco-Gutierrez summarized the problem at hand with levity: “We don’t talk about Bruno, and we don’t talk about the brain with Covid.”

Bruno is a soothsayer in the hit 2021 Disney film Encanto. In it, he foretells the fall of his own house and becomes a pariah. His own family and friends banish him from town. Having nowhere else to go, he hides out in the walls of his family home, becoming an invisible yet ever-looming presence.

The Friday before her testimony, I spoke to Verduzco-Gutierrez on the phone. It was late afternoon, the end of what I imagine was a busy week. Being a physician myself, I knew well how everything could turn into a blur after so many patient encounters, emails, and meetings, yet she remained warm and interested. Just a few minutes in, our dialogue started to feel easy like we were two colleagues catching up.

But on a deeper level, we understood the gravity of our endeavor. We were doing what many in the medical community were reluctant to do.

The difficulties in acknowledging long Covid have much to do with its amorphousness. Per the Centers for Disease Control and Prevention, it’s a “wide range of new, returning, or ongoing health problems that people experience after first being infected”. Moreover, no tests exist for long Covid. “There’s not a way for me as a physician to diagnose long Covid based on physical exam, blood work, EKG, or a scan,” says Verduzco-Gutierrez. “We in the healthcare profession love evidence-based data and tests, and we don’t have all those answers yet for long Covid.”

I recognized that this predilection is something ingrained early in our training. I learned, first as a fledgling microbiologist and later as a physician, to shift through results, recognize patterns and think critically about their significance. Such repeated conditioning attests to the excellence of modern medical education, yet no one had really prepared me to be comfortable with the unknown.

“A good physician treats the disease, but the great physician treats the patient,” taught the father of modern medicine, William Osler. Despite such insight, he failed to transcend the limits of his time. In his textbook The Principles and Practice of Medicine, Osler lists bloodletting as a potential treatment for pneumonia. Then, about 10 years following his death from the Spanish flu came the advent of insulin and Fleming’s penicillin. Such “magic bullets” revolutionized the way in which doctors saw themselves. They were no longer merely practitioners of art but defenders of specialized knowledge and dispensers of lifesaving treatment.

Such a shift in roles also produced a change in attitudes. Our instinct now is to ignore and deny what we can’t understand or help. I suspect such a reaction stems from fear. We have difficulty compartmentalizing any challenges to the hard-fought progress that our predecessors have made. We’re afraid that if the fabric frays at one corner, the whole thing might unravel.

One solution is to bring the unknown entity into the fold of medicine. Though described by pathologist Carl von Rokitansky in the 1860s, endometriosis, or the growth of endometrial tissue outside the uterus, remained misunderstood for centuries. Well-meaning doctors attributed their patients’ symptoms to hysteria and subjected them to pelvic massage, clitorectomy and institutionalization. What changed the perception of endometriosis is the advancements in laparoscopic surgery, which offered both means of diagnosis (via direct visualization) and minimally invasive treatment. Moreover, the medical community began to invest in its cure once they realized that it causes infertility, a condition apparently more consequential to society than women’s suffering.

Though long Covid may be the endometriosis of our era, the sheer scale of its prevalence and economic impact makes a similar wait for answers and acceptance untenable. Verduzco-Gutierrez and others like her are working hard as humanly possible; she’s published over 30 papers on the topic and has taken on 500 additional patients on top of her usual clinical load. But she recognizes she cannot make meaningful progress alone. She urges healthcare providers across all disciplines to join her effort.

In the meantime, patients still present to the ER, searching for explanations and cures that are beyond the scope of my practice. But I no longer approach them from the dichotomous perspective of an ER doctor. I recognize they are fighting for their lives even though their fight might not be imminently life-threatening or obvious.

So, I block off time that I do not have. I listen to their tangled narratives from the beginning. I try to feel out and expand the edges of their understanding so that they can prepare themself for the difficult recovery ahead.

Every time I’ve done this, I’ve braced myself. I assume no one wants to hear that they may have an ill-defined and potentially debilitating disease. Yet so far, not a single person has reacted with anger or despondency. What I see in their faces after our conversation is relief.

Finally, someone believes them.

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