Patient POV

My Experience with Long COVID

The Siegelman family poses with bicycles and their cocker-spaniel in an outdoor setting.
Emergency physician Jeff Siegelman has had months of prolonged, debilitating symptoms from COVID-19. Activities like bike riding with his family (below, a family outing pre-COVID) are not yet possible for him due to profound fatigue.

Two-hundred thirty days.

It’s a long time to have COVID-19, but it’s also seven months of not being able to play soccer with my kids, seven months of watching my wife single-handedly keep our home afloat (while working full time), and seven months of not being able to taste or smell. This is in addition to seven months of not being able to work on the front lines as an emergency physician.  

The news focuses on the more than 18,000 Georgians who have died from COVID-19, and rightly so. On the opposite end of the spectrum, many focus on the fact that the majority of COVID-19 infections result in mild or asymptomatic reactions—a fact for which we are all grateful. However, in the middle are thousands of people like me, suffering from months of debilitating symptoms with no end in sight. 

My story, like so many others, belies the either/or perception. And, it is a very real outcome for more than a third of young, healthy individuals who get COVID-19 and aren’t hospitalized. I ask you to consider the fact that, while you may not die, your COVID outcome could easily be as uncertain and difficult as mine. You could get “long COVID,” suffering from persistent symptoms for months, which cannot easily be cured. 

On August 3, I awoke with a headache and a few hours later found I had a low-grade fever. The ensuing weeks added a barrage of ever-changing symptoms—chills, muscle aches, headaches, loss of taste and smell, and insomnia. As the weeks wore on, I kept waiting for the day when I would wake up feeling better, but instead my symptoms continued morphing. Chills and aches became heart palpitations, high blood pressure, and fatigue so profound that I could not get off the couch for hours after just walking a half of a mile. My thoughts clouded, “brain fog” hampering my concentration. Dizziness and headaches continued, worsened by all manner of activity. Even something as simple as eating a meal would increase my symptoms. 

Now, more than seven months in, these ongoing symptoms have also resulted in feelings of guilt. I still cannot be an equal partner in our household. I still cannot be active with my kids. I still cannot work full time, leaving my colleagues in the emergency department to work mandatory overtime at a moment when every shift is so stressful as to push emergency physicians to the precipice of burnout.  

Complicating this is that I appear healthy, as do many with long COVID. When I meet someone outside, they often assume I am better as they remark how good I look, only for me to explain that the short walk I am taking is all the exertion I can muster for the day. 

Symptoms of long COVID vary widely and can affect almost every system in the body. While many long COVID patients experience the same symptoms I do, others suffer with cough, shortness of breath, chest pain, and more. 

Some people have one or two of these symptoms that linger, others have so many that they are unable to return to work or normal activities. Frustratingly, treatment for these symptoms is an exercise in trial-and-error, with the National Institutes of Health and others only just beginning to call for research on understanding the many forms of long COVID and how to treat them. 

So, what are the chances you’ll end up like me? To be sure, reports vary about how many people with COVID-19 go on to have long COVID, but it is clear that the number is significantly higher than with other viruses and could be as high as 1 in 3. Even using a more conservative estimate of 10% means that of Georgia’s more than 1 million confirmed COVID cases, almost 100,000 people don’t get better within three to four weeks. Could you afford to be out of work that long? How would that affect your colleagues and your family?  

I know that 2020 was a long and difficult year. I know that we all want to be with friends and family, especially after a year of quarantine. And yet, I ask you to please join my call to action. The task is simple: mask up, stay physically distant, and help everyone get through this. The vaccine that we’ve waited for is finally here, but it might not make a difference if you’re already disabled from long COVID.

Jeff Siegelman is an associate professor of emergency medicine at Emory School of Medicine and works as an emergency physician at Grady Memorial Hospital in Atlanta. 

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