My first Covid-19 symptoms appeared on March 14: a low-grade fever, profound leg pain, malaise, and loss of appetite. More than 100 days later, Covid-19 is still with me. Some days I wonder if it will ever leave.
In the early days, as my symptoms fluctuated, I was determined not to go to the emergency department or urgent care because it seemed like there were too many people who needed the help more than I did. Maybe I was especially sensitive to overcrowding in emergency departments because I’m a physician. But it turns out that this strategy was a common one.
In New York City, where I live and work, there were more than 5,000 excess deaths not directly linked to Covid-19 between March 11 and May 2, likely because people were delaying care or not going to emergency departments or urgent care due to fear of contracting Covid-19 or oversaturating the medical system.
I did eventually go to the emergency department one day when the abdominal pain and nausea were severe. Routine testing showed that the level of liver enzymes in my blood was higher than it should have been, but not much more, and I was sent home.
Once day 14 had passed, my fear of an impending respiratory collapse turned into an uncertainty about the trajectory of my disease and a desperation for answers. I contacted my doctors regularly, hoping their responses would bring relief in the form of some intervention. Yet most of their efforts did little to significantly change the course of my symptoms.
As a relatively inexperienced physician, the bulk of medicine I have practiced has been focused more on the known than the unknown. As a psychiatry resident, I have become somewhat more accustomed to diagnostic uncertainty and clinically guided trial and error. Yet as my Covid-19 symptoms dragged on, my physician identity began blending into my patient identity. As I repeatedly encountered the term supportive care, I realized that this wait-and-see approach hardly seemed like care at all.
Doubt started creeping in. Mild and moderate cases resolve within two weeks, I kept telling myself over and over, while my body was telling me a different story. Soon, though, articles about the potential for prolonged symptoms trickled in, easing the isolation I felt from being an outlier and giving me some hope. At the same time, the guilt of being unable to assist my colleagues in a time of crisis lurked in the background.
My search for answers eventually led me to an online support group that included people like me with prolonged Covid-19 symptoms. In addition to validating my experience, I felt a strong sense of belonging to a larger community as I read through reports of others going through the same thing I was, sometimes even with the same emotional response.
Some in the group had prolonged low-grade fevers that didn’t respond to standard fever-reducing medications. Some experienced terrifying neurological manifestations such as memory loss and changes in their ability to recall words in a primary or secondary language. Others were battling exercise-induced fatigue, with attempts at walking around the block sparking a relapse of symptoms. I’ve seen people citing symptoms in the central and peripheral nervous systems, the gastrointestinal tract, the skin, cardiovascular system, and more.
The multitude of organ systems that were affected, along with the waxing-and-waning nature and unpredictable trajectory of symptoms, were particularly eye-opening.
I learned that there were many people with symptoms more severe than mine, some of whom were isolated both physically and emotionally, left to fend for themselves, without the robust support system I am lucky to have.
I also discovered a patient-led research project attempting to characterize post-Covid-19 syndrome. As I become involved in this project as a patient and clinician, I hope to emphasize the patient perspective, ensuring that this population is heard by the medical community and highlighting the toll this disease has taken on patients’ abilities to successfully live their daily lives.
Recent deaths by suicide of medical providers who tested positive for Covid-19, though unconfirmed to be related to the illness or its consequences, underscore the tremendous need for support during this time, in which many of us are plagued by uncertainty. People like me with prolonged Covid-19 symptoms have described the doubt they have faced, at times feeling gaslighted by family members and employers attributing their ongoing symptoms to post-viral chronic fatigue syndrome or anxiety, and questioning their inability to return to work after two weeks of illness. Even if it turns out to be true that there is a psychological component to prolonged recovery, comments like “your symptoms are all psychological” or “there is nothing wrong with you medically” do little more than create distance and potentiate resentment.
I’ve now logged nearly four months of symptoms, with little sign of returning completely to my pre-Covid self. As a physician, I was aware of the concept of post-viral syndromes; as a patient, this concept brings a dismal new meaning, signaling the possibility of a new disease and everything is unknown — especially how long the symptoms will last, and which of them might be permanent.
I am lucky not to have the debilitating fatigue, shortness of breath, and fevers others have been experiencing. At this point I’m still experiencing intermittent gastrointestinal symptoms, persistently high liver enzymes, which a liver specialist is trying to figure out, and an odd and continuous discomfort in my leg, which may be paresthesia. I’m able to go to work and go about my life just fine. Many others can’t do that.
I write with the hope that even one more patient who has been struggling with prolonged Covid-19 symptoms may not feel so alone. I write with the hope that one more physician, friend, family member, or supervisor may see this article and realize the importance of support since there’s currently a lack of treatment options.
So far in the pandemic, clinicians have focused nearly exclusively on managing respiratory symptoms and preventing the spread of SARS-CoV-2, the virus that causes Covid-19. As we enter the next phase, increasing evidence points to a significant proportion of us with prolonged symptoms, and this warrants attention.
Yochai Re’em is a physician and third-year psychiatry resident at NewYork-Presbyterian Hospital, Weill Cornell Medicine.