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A Piece of My Mind
November 11, 2020

Reflections of a COVID-19 Long Hauler

Author Affiliations
  • 1Emory University School of Medicine, Department of Emergency Medicine, Atlanta, Georgia
JAMA. 2020;324(20):2031-2032. doi:10.1001/jama.2020.22130

I awoke on a Monday morning with a headache, and I am not a headache person. Fever followed, and the next morning my blueberry yogurt tasted of nothing. Thick emptiness. I knew I had it. Now, after more than 3 months of living with coronavirus disease 2019 (COVID-19) and the fatigue that has kept me couch-bound, I have had ample time to reflect on what it means to be a patient, how an illness ripples through family and community, and how I will use this experience to be a better physician. Here is what I have learned.

Mild Illness Can Have Dramatic Effects

I have what is referred to as a “mild” case. I have no preexisting conditions, was never hospitalized, had minimal respiratory symptoms, and even managed to do limited office work throughout the acute illness. For this, I am grateful because I have seen first-hand how awful COVID-19 can be for others. And yet, living with this has been anything but mild. I quarantined in the basement for 40 days, staying isolated from my family because low-grade fevers continued, and the Centers for Disease Control and Prevention guidance was unclear for people like me. I talked to my children only through FaceTime or walkie-talkies and saw my wife only by looking up between the balusters of the stairwell. Embraces were out of the question when what I needed most was human connection. Aside from my isolation, the effects on my family were also isolating. Even after they quarantined, my family continued to worry about whether they would become ill, whether I would get better, and whether others would be too afraid to be around them because of my illness. And, my parents, 600 miles away, were also struck with anxiety and an inability to help. These were but a few of the severe effects of a mild disease.

The Lack of Objective Data Does Not Preclude Illness

As an emergency medicine physician, I am trained to develop a hypothesis and to look for objective evidence in support to quickly identify the cause of a patient’s suffering. In the absence of objective data—laboratory tests, imaging, examination findings—we are often left to reassure patients and discharge them with a recommendation for outpatient follow-up, an outcome that too easily can feel dismissive and unsatisfying for the patient and unfulfilling for the physician. My test results were normal: nasopharyngeal swabs for severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), imaging, laboratory results, oxygen saturation were all fine. But I did not feel fine, and still do not. I have had a rotating constellation of symptoms, different each day and worse each evening: fever, headache, dizziness, palpitations, tachycardia, and others. As a result, I have been reminded of the need to listen to the patient first, even in the absence of conclusive testing. The next time I care for someone with vague abdominal pain, or fatigue, or paresthesia, or any of the myriad conditions that are uncomfortable on the inside but look fine on the outside, I will remember that these symptoms are real and impactful for patients. There is a marked difference between tests being within normal limits and a patient being well.

It Is Hard to Ask for Help

My family and I have been so fortunate to have the support of friends and family, near and far, who have helped us with messages, calls, meals, puzzles, books, and more. So many have asked, “What can we do?” But, coming from a profession focused on helping others, it was hard to accept help. I could not bear to see emails activating my colleagues who were on-call to cover my shifts day after day. In fact, I asked the department to reconsider its practice of emailing the entire faculty with the name of the person seeking coverage to assuage the guilt I was feeling. Still, as difficult as it has been to accept help, long illness is even worse without help. If people had not insisted on helping, had my colleagues not been so supportive in covering my clinical work, these 3 months would have been marked by an overwhelming amount of additional stress.

Patients Need Validation

With each negative test, my worry increased that my employer would ask me to go back to work too soon or that my primary care physician would rule out COVID-19 despite strong clinical evidence otherwise. I doubted myself multiple times—thinking if I just pushed myself harder maybe I could go back to work and to my regular life, to move on. Then I would eat something without taste, would feel my heart pounding uncontrollably for hours, or would get so dizzy that I could not even write a simple letter. Each evening as my symptoms peaked, I was reminded that my diagnosis was not in question. I am so grateful that, instead of my worries manifesting, quite the opposite was the case. Instead of doubting the diagnosis, my doctor sent me the latest medical literature on long COVID-19 and patiently empathized. My employer clearly understood the inaccuracies of current testing, focusing on symptoms instead. My wife reminded me that she knew what I was experiencing was real. This validation was critical, allowing me to find peace and focus on healing.

I Am Lucky

My experience is not typical. I have a home with a well-equipped basement where I could safely and completely isolate. I have a wife and children who have approached my illness with endless strength and compassion. I have an employer that recognized the need to use a symptom-based approach for making return to work decisions and that provides a generous salary continuation benefit. And, I have long-term disability insurance should this affect me beyond 6 months.

This is not the case for most patients, many of whom cannot isolate from family and cannot afford to miss even a day or 2 of work. I have not had to live with the financial and health worries that accompany a COVID-19 diagnosis for so many in this country. I am also privileged by my race, whereas so many people of color are disproportionately suffering from this disease and others due to the many manifestations of institutional racism in this country. Recognizing this fact, I know how important it will be to continue to offer help and support to others less fortunate than me who are affected by COVID-19 and other chronic illnesses.

As I continue to live with uncertainty, fear, and a certain degree of continued isolation, the silver lining is the hope that my future patient interactions will allow me to provide greater comfort and validation, even when I cannot offer objective answers or concrete healing.

Section Editor: Preeti Malani, MD, MSJ, Associate Editor.
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Article Information

Corresponding Author: Jeffrey N. Siegelman, MD, Department of Emergency Medicine, Emory University School of Medicine, 49 Jesse Hill Jr Dr SE, Atlanta, GA 30303 (jsiegelman@emory.edu).

Published Online: November 11, 2020. doi:10.1001/jama.2020.22130

Conflict of Interest Disclosures: None reported.

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    6 Comments for this article
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    Yes, Indeed
    Richard Cooper, MD | Loyola University Medical Center, Public Health Sciences
    I just want to underscore the perspective of Dr. Siegelman. We are all taught about hearing the patient narrative but all too often if you aren't "lab sick," well, you're not really sick. Having been through something similar I also have a deep appreciation of the flip side - so to speak - the limits of empathy that certainly the great majority of us share. It is very difficult sometimes to both muster the energy and make the right judgment.

    We all know it's a dangerous road - patients certainly adopt a sick role
    often enough and forget that optimism is the antidote for depression and self-pity - but a debilitating condition comes in many flavors and colors.

    But surely we listen too little. The person on the other end can pay an enormous price for that.
    CONFLICT OF INTEREST: None Reported
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    Here may lie one Hidden Silver Lining to Covid-19: Learned Empathy
    Louise B Andrew MD JD | Retired; please use my correct professional name as indicated below
    This is a piece for our times, and should be read by everyone currently practicing medicine. What makes it so riveting is that if could be any one of us, suddenly developing a devastating disease that could easily become chronic and indolent, and instantly take us from the ranks of "healers" with our white coats of invincibility, to patients in embarrassingly scant gowns, unable to perform what we have seen as our life's purpose, possibly even for a prolonged period of time.

    If we should experience a more chronic course, we could be relegated to the ranks
    of "complainers", gaslighted by our colleagues out of habit, as is described by Mady Hornig in this recent AMA video (1). 

    And if we are fortunate enough to escape Covid altogether, I fervently hope we can remember the central teachings of this article: 1) count your blessings: despite our exposure we are among the most fortunate of all citizens during this frightening time in our history, for any number of reasons and 2) (to quote Peabody) "The secret of caring for the patient, is caring for the patient," which begins and end with listening, empathizing, and assuming that what patients are experiencing is real and 3) If we can't empathize and care for our colleagues when they become patients, or worse, add to their burden by penalizing them for being ill/human, then why are we even in this profession?

    REFERENCE

    1. https://www.ama-assn.org/delivering-care/public-health/ama-covid-19-daily-video-update-patient-physician-share-their (experience with Long Haul Covid
    CONFLICT OF INTEREST: None Reported
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    Concur 100%
    Debra Krummel, MS, PhD | Retired Scientist
    Weekly, there seems to be an article, program, or something in the media on long Covid. And finally, research into this chronic condition is now happening. Last week, I was on the other side of research as a subject instead of a PI. It has bothered me all along that only the mortality of Covid-19 was reported without any mention of morbidity.

    As a person in this boat [> 4 months], I echo what’s in this commentary. I used the WHO guidance for isolation as it was more comprehensive than the CDC’s and that meant
    45 days for me. Hubby would leave trays of food, ice, etc outside the door of my isolation room. The impact on the family was tremendous. Extreme vigilance prevented him from getting it.

    Thank you for writing this important commentary as many physicians are not aware of long Covid. One refused care when I failed the screen re:symptoms (this was @ 3 months). Often, I have felt like a leper because even with public health measures, some people (medical and lay) don’t understand that I am no longer contagious.
    CONFLICT OF INTEREST: None Reported
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    Limitations of COVID19 testing
    Shamie Das, MD, MBA, MPH, FACEP | Emory University, School of Medicine, Department of Emergency Medicine
    Thank you Dr. Siegelman for sharing your experience. The role of healer as patient is always a difficult one to assume despite the severity of illness. Perhaps eventually all physicians accept that we are destined to suffer the same diseases as our patients, such as contemporaneously experienced in novels such as "When Breath Becomes Air" by neurosurgeon Dr. Paul Kalanithi.

    One aspect of Dr. Siegelman's experience that I would like to highlight is the limitations of COVID-19 testing. Perhaps some advances have been made since his illness; however, we are very early in this pandemic of a novel coronavirus,
    and a gold standard has yet to be defined. This is particularly important in a disease process that may not leave lasting biomarker evidence of its presence through the complex immunological response of the immune system.

    Ultimately, Dr. Siegelman's experience reinforces the importance of the art of medicine when the science is lacking.
    CONFLICT OF INTEREST: None Reported
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    Long-Haulers
    Marianne Bush, BS, RN |
    A big thank you to Dr. Siegelman for writing this and to JAMA for publishing it! ”Long-haulers” are nothing new, but unfortunately have been ignored by the medical community.

    I am a long hauler from an Epstein-Barr virus infection. As a healthcare professional I was disappointed that conventional medicine did not offer any help, but even more frustrated that my debilitating symptoms were not even acknowledged.

    I have now recovered after many years to a point where I can function around the home and enjoy time with family and friends. However I have not regained
    my ability to withstand part-time nursing work for anytime greater than a few months without a relapse.

    It has been quite devastating to lose a career I loved, and to not even have proper documentation in my medical record to get any sort of disability. On the bright side, I am improving, thanks to an alternative healthcare practitioner and my unrelenting perseverance to overcome.

    As a nurse I have always tried to be an advocate for patients. So thankfully I was able to get an article published In a peer reviewed journal to educate those in conventional medicine about ME/CFS (1). I highly suspect that it is related to Covid long haulers. Please read and share.

    Again, a big thank you to Dr Siegelman! May you feel well soon and inspire others on your journey!

    REFERENCE

    1. https://journals.lww.com/nursingmanagement/Fulltext/2020/10000/Chronic_fatigue_syndrome.4.aspx?fbclid=IwAR0Hbb1wwZ5olP5gLP7EG14KF0d00Z2l_rXcGVre-z6phmYQl3eZ0q7iZ8Y
    CONFLICT OF INTEREST: None Reported
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    Preparing for the Long Haul
    Brette Svensson, DNP, MSN | Post-Acute and Long Term Care, Wellstar Health System
    Thank you for this article and insight. I am about five weeks out from COVID-19 infection and fatigue is my primary hurdle. I feel fortunate I still seem to be a "mild" case, but it is frustrating nonetheless to wake up and have poor balance, no energy, and slow processing. I also echo Dr. Siegelman's feelings of guilt - as someone used to managing multiple things, moving quickly, and clearing out voicemails within 24 hours, I feel guilty placing more responsibility on my nurse practitioner and physician colleagues. None have expressed anything but support and compassion, but I imagine for any of us it is difficult to accept we may not be ourselves for some time.
    CONFLICT OF INTEREST: None Reported
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