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.
I believe you. I have the same. A dear friend almost died until a good doc sent him over to get on a respirator. After some agonizing months he was released to rehab and then home. Still weak,does constant small chores for rehab. Rests. It is the covid. The first tests came back neg. They don’t know it all about this virus. His coworker went home and died within a week. Listen to your body. Easy does it.
I am sorry to report that the “secondary gains” that medicine seems to believe so firmly in do not, in fact, actually exist when it comes to chronic illness. Sympathy tends to run out very quickly with people who are “sick”, rather than actually sick. This assertion is quite frankly a grotesque lie given how easy it is to falsify it, how much evidence there is for the horribly low quality of life the chronically ill are condemned to by medicine. This is all verifiable and already well-documented so there is no excuse to continue to repeat such obvious nonsense.
As much as there are no such secondary gains, there are enormous primary losses. For those affected by highly disabling illnesses like ME/CFS, the losses are total and go far beyond material loss, which is itself almost total. Most chronically ill people are ostracized by their own friends and families, almost entirely because medicine condones, even encourages, discrimination and contempt against us, misrepresenting the reality of chronic illness entirely. Not unlike lepers were treated in medieval days.
Medicine plays an official gatekeeping role in determining who deserves any form of “secondary gains”, meager as they are, regardless of primary losses. Obviously by not recognizing chronic illnesses like ME/CFS, fibromyalgia, dysautonomia and others, those “secondary gains” are explicitly withheld, as they all derive from medicine’s blessing that they are warranted and deserved. Those gains are all locked tight behind signatures that are never put to paper.
So it’s particularly bizarre to see doctors make such assertions when they can personally testify that no such privileges are handed to the chronically ill, the author even describes it perfectly, that had she seen her case as a patient, her immediate and only reaction would be to gaslight the patient and send them packing. This is the near universal norm, hence no “secondary benefits”. There is no disability fairy. When doctors say no to help or support, this is what the rest of society applies. The experts say no, that means no. No help. No sympathy. No empathy. No quality of life or basic human dignity.
Medical gaslighting is one of the most grotesquely harmful things done by humans outside of conflict and business. It’s easy to see why it perpetuates itself, when even the medical professionals who make sure no such “gains” are available continue to make assertions about those gains, knowing full well they can’t possibly exist since they refuse them regularly in a clinical setting.
The reality of chronic illness is horrible, a human rights disaster of choice, and this is in large part because of medical gaslighting and medicine misrepresenting the reality of chronic illness. Only medicine can change this, patients have no influence on health care, including our own, physicians are sovereign in their domain and work in a tightly insulated culture. Physicians experiencing the grotesque reality of medical gaslighting may change that, but if it doesn’t then nothing will change this most perfect example of the banality of evil.
“physicians are sovereign in their domain”
Not any more. They allowed their profession to be turned into insurance- claim-filing businesses which were sold off to the Wall Street parasites. Young physicians like this essay’s author probably have no idea that only a few decades ago most hospitals were truly non-profit and controlled by the local community.
In order to have humane health care we will need humane institutions run by compassionate humans rather than greedy psychopaths looking for bigger profits. The “Greed Is Good” crowd at the top are not going to leave voluntarily. It is going to take one helluva fight to drive them out. Sure hope it starts soon.
Well said, Richard! Millions of ME/CFS patients can testify to the truth of your words!
Turning to social media for a medical problem? Oh dear…
Very good that you have recovered
my wife got very sick towards the end of February. All the cover symptoms were there. About took her to hospital but she didn’t want to go. To this day she still experiencing shortness of breath and extreme fatigue at the end of day. She’s was tested again last week and was neg.Shes also seeing a pulmonary dr that keeps trying different inhalers with combination of steroids. This has been a long haul…very upsetting for her and me. Tonight is a rough night with low grade fever and extreme exhaustion. Please advise or help…best Kelly
I’m so sorry you’re suffering. This is the experience of the #millionsmissing with ME/CFS. May there be answers for all of us soon. I appreciate your honesty in writing about your experience with the medical community and your feelings of shame and self doubt. As to the “secondary gains”, it’s hard not to take a sarcastic tone and say, oh, yeah, totally worth the attention from my three remaining close friends who visit on the rare occasions that they can briefly come by and that I then have to recover from for days afterwards. Completely worth it to give up every activity I loved and the plans we had for retirement so I can stay sitting or lying down feeling fortunate that I am at least able to read (many can’t even handle that much stimulation any more).
Our hope? That the long-covid phenomenon will lead to some improvements in the care and awareness of those of us who have been suffering for decades.
May you recover quickly and be one of the newly educated doctors who have the compassionate understanding that this is real.
You are in the perfect State because Massachusetts has a ton of research into this. Eveyone should also consider joining MEAction.org or SurvivorCorps. Take good care and pace yourself …
You are in the perfect State because Massachusetts has a ton of research into this. Consider joining MEAction. org. Take good care and pace yourself …
I am a covid-19 long hauler and my doctor says it’s all mental
What does it take to make more doctors to listen to us. I’m tired of hearing it’s mental. These kind of doctors need to go through what we go through every day
THANK YOU from the bottom of my heart for this article! I relate so much to your story.
I was ill back in the begining of January, with all the symptoms of COVID but back then I didn’t even know about the virus. I live in Europe and I realised what I had only a month or two later. I have had persistent fatigue, pain in my joints and tendons, inabilty to concentrate and occasional shortness of breath. My pain is still NOS and I am often having those debates between my mind and my body and most of the people around me don’t take it seriously and don’t understand me. I was even sent to do the blood tests for rheumatoid arthritis and they came back normal, so that reinforced the people not understanding or not believeing my symptoms.
Stories like yours make me feel relieved and concerned at the same time. Relieved for not being crazy and concerned because I might be having serious long term consequences and impaired health. Thank you for talking about this publicly. I hope you fully recover as soon as possible!
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