I have all the symptoms of a Covid-19 long-hauler — but I’m hesitant to identify myself as one

As a physician, I never thought that I would someday be lumped into the category of patients known as “not otherwise specified,” or NOS for short. This category is dominated by women suffering nonspecific symptoms that are inconsistently appreciated by clinicians who eventually conclude that the problem is entirely in the mind.

My induction into this group began on March 23. The emergency department in which I work had been seeing coronavirus patients, at first without our donning standardized personal protective equipment or following universal masking protocols. So when I developed a deep, dry cough, it was not outside the realm of possibility that I had contracted Covid-19. I notified my hospital’s occupational health department, even though I was personally convinced that my lungs were fighting a different, less serious respiratory virus, and that I would be back at work within days.

My conviction proved to be wrong. Despite testing negative for SARS-CoV-2, the virus that causes Covid-19, the course of my illness mimicked that of the “typical” coronavirus patient. The relentless dry cough and fatigue were followed by shortness of breath. My mentors, also physicians with whom I had informally consulted, were concerned that mine was a false negative test; at the time, the sensitivity of the swab was thought to be around 70%. But my chart was never flagged as “CoV-positive,” so my story was never counted in the growing statistics of employees affected by the disease.

When I got sick, the guidelines for returning to work were that all symptoms must have resolved. After a long month of isolation, asking every week to be cleared for work, I finally insisted that I was ready. I was no longer short of breath while walking around my apartment. The remaining symptoms — weakness, muscle aches, and low energy — were nonspecific, subjective, and, therefore, things I could surmount. My persistent painful cough was given various names. Some providers definitively labeled it as postnasal drip, others said it was new-onset asthma. My colleagues and I settled on post-viral bronchospasm.

I was eager to get back to work in the intensive care unit. It was the end of April, and though Boston’s ICUs were still filled with coronavirus patients, we were beginning to think about what recovery might look like for those who had been critically ill. How many of them would suffer from long-term complications? When would they return to their normal lives?

After working several shifts, I found myself unable to get out of bed one morning: the aches and fatigue were taking over. “Get up! Push through!” my mind scolded my body. My body and mind played this game for weeks. Every time I returned to work, hopeful to care for patients, my body protested, breathing hard and exhausted by the end of morning rounds.

Provider after provider unknowingly put me on trial, poised to accuse my body of falsification and interrogate it to discover alternate explanations. Without a positive SARS CoV-2 test, there was no simple diagnosis for my symptoms. When I asked them to look at the notes from my phone encounters with other clinicians, they used the same line I use on my patients: “It’s better for you to recount the story again, in your own words.” But I was tired of telling — and reliving — the story. I apologized for potentially wasting their time, as there might not be anything wrong with me, echoing the hesitancy of many women who are dismissed and fearful of being labeled as anxious or hypochondriacs.

Without seeing me in person or even virtually, nurses and doctors I spoke with on the phone posited the same diagnoses: post-nasal drip or asthma. Forced to take the stand, my body had to prove, to my mind and to everyone else, that it had been sick and it was still not well. “Despite my negative Covid tests, some of my mentors (who are also doctors) believe that I may have had Covid,” my body would begin its opening statement. My mind, trained by the best physicians and algorithms, was primed to prosecute. “Your story could fit, but we don’t have objective evidence. That’s why everyone is questioning; we don’t believe you.”

After all, that’s what we do to our patients. Shortness of breath could be any number of things. A productive cough might suggest pneumonia. Swelling in only one of your legs might indicate a clot there, which could mean there’s a clot in your lungs. Swelling in both legs could be fluid overload. Prove your diagnosis to me, and if your body can’t your lab work will.

Four months into my “illness,” no closer to any answers, I settled on “deconditioning, NOS.” If I took the right precautions — sleeping nine hours a night and dragging a chair around on rounds — I could last through the workday.

But around that time, clinics started to reopen and I finally met my primary care physician for the first time ever. As I walked with the medical assistant and felt short of breath again, I peeked at the oximeter: My heart rate had risen to 149, almost twice what it should have been, and my blood oxygen level gradually dropped to 79%, when it should have been close to 100%. “Is this why I’ve been feeling so tired?” my body asked.

My vital signs earned me a diagnostic work-up. It was the first time a health care provider had listened to my heart and lungs and ordered the basic bloodwork and imaging that have become standard of care for confirmed coronavirus patients. But the results of these preliminary tests, completed five months after my first symptoms, were nonspecific. I was given no clear diagnosis or treatment plan. The consensus reached by the specialists was that the oximeter readings, which repeatedly showed my oxygen levels dropping as I walked, were faulty. Case closed.

“See?” my mind retorted. “It’s always just been in your head.” Though I would advise my own patients in similar situations to seek medical evaluation, I instantly regretted visiting my primary care physician. If she had never taken my vital signs, then I would not have allowed my body to slip back into the belief that it had been sick in any way. I never wanted to be over-medicalized.

In May and June, the media began to cover a group of people calling themselves long-haulers. These people suffered coronavirus-like syndromes in March and, for months afterward, experienced prolonged symptoms of shortness of breath, fast heart rates, and fatigue. They started support groups in which they could discuss their lingering symptoms. Membership in these groups quickly expanded globally.

I held off on joining these groups, unwilling without a positive test to label myself a coronavirus patient. But curiosity eventually led me to join a long-haulers Facebook group. What I saw there was both illuminating and perplexing. I scrolled through post after post of individuals who had also gotten sick in March. Some initially had positive tests for SARS CoV-2, others did not, and many more had no access to testing at the time.

Regardless, their symptoms mirrored my own. While many complained of ongoing shortness of breath when exerting themselves (some with corresponding drops in their blood oxygen levels), they reported that their lab work and imaging, completed months after their symptoms began, were inconclusive. Most distressing, many turned to the coronavirus antibody test, which health care providers were hailing as highly sensitive, for answers, but to their surprise they tested negative. It was only at the end of July that researchers began to question whether antibodies remain detectable a few months after infection, a window many long-haulers missed.

The long-haulers circulated medical resources, but also stories of psychological anguish. Despite their symptoms seeming “typical” for Covid-19, some described feeling ashamed as their peers or health care providers dismissed their symptoms as stress-related or new asthma in the absence of positive tests. How was it possible that all of these people had strikingly similar experiences? Is our understanding of the virus’ biology lacking? Or is there another unrelated NOS condition spreading around the world?

The details of the long-haulers have been shared for months in social and popular media, but only recently entered academic medicine. We, as health care workers, have long been discussing the implications of post-Covid-19 care for critically ill patients, but we have barely addressed the needs of those who stayed home. We have not discussed how we will approach their prolonged debilitation; the financial and equity implications of their inability to work; and the psychological sequelae of feeling sick and cast aside. If we continue to reject that their symptoms warrant investigation and treatment simply because they are not understood, these people will inevitably be alienated from the medical establishment and forced, like other “NOS” patients, to seek compassion and care only from each other.

As readily admitted by many in the health care community, from clinicians on the front lines to journal editors, long-haulers evoke the same reactions that we have to patients with other medically inexplicable conditions like chronic fatigue syndrome or fibromyalgia. Namely, we assume that their symptoms are psychologically driven, perhaps implicitly by stress and explicitly by secondary gain, the advantages and attention one receives from others when physically ill. It is difficult to accept long-haulers as a group that warrants our attention.

I am still hesitant to identify myself with the long-haulers, unable to divorce my mind’s adherence to objective evidence from my body’s symptoms. But I share their struggles. Physicians are taught to weigh objective evidence over subjective experience. The patient’s history — her or his description of what is going on — is important, but the data (lab work and imaging) and the physical exam are more important. After all, patients are not always reliable historians.

But this mindset allows clinicians to write off the symptoms of those in the NOS category and, in doing so, heighten their suffering. Instead, perhaps we ought to humbly admit uncertainty and maintain the openness and curiosity required to ask the right questions. Whether the biology of Covid-19 infection turns out to be as serious as irreversible cardiac damage or as simple as profound deconditioning or stress reactions, these are all conditions that can and should be treated.

While the diagnostics we currently have for NOS conditions are imperfect, we must still care for the humans before us.

Pooja Yerramilli is a resident physician in the global medicine/internal medicine program at Massachusetts General Hospital in Boston.