We Need to Talk About Long COVID

It’s summertime and the living is easy… or, at least easier than it has been for the past two years. As a global society, we are weary of lockdowns and lonely for lost companionship. We are fed up with this pandemic and all the restrictions that go with it. Chronic uncertainty, grief, and stress have left us threadbare and gasping for normality. Reconnecting with friends and family is on tap, masks are off, and it seems like all the world is on vacation.

Of course, the pandemic is not really over. COVID-19 continues to mutate, with new variants causing flare-ups in susceptible regions. While economics and a desire to return to normal have expedited the lifting of mask mandates, the virus is still out there, as is the possibility of more virulent emergent strains.

But for now, infections, hospitalization, and deaths are down and we have more tools, such as vaccines and antiviral drugs, to hold the virus in check. So, we bask in sun-drenched summer days, dreaming of barbeques, block parties, festivals, and travel. Close to three-quarters of Americans are planning to vacation this summer and less than a third consider COVID to be a major factor in their planning (Nirappil, Pittman, & O’Hagan, 2022).

It is therefore with empathy and keen awareness of our collective pandemic fatigue, that I ask for your forbearance—that you might briefly reign in your jubilant summer planning, reach into your used-up heart, and contemplate another, quite different, reality. There are those amongst us who will not be going on holiday, reconnecting with loved ones, or diving into a summer of celebratory fun. There are millions of Americans, in fact, who are suffering with long COVID, experiencing disabling symptoms for weeks, months, and even years, post-infection.

I became sick with COVID-19 on March 5, 2020, and now, like many others, have been sick with long COVID every day, for over two years. Long-haulers are stuck in a never-ending cycle of symptom relapse and remission—struggling to get through each day, desperate to find therapeutics and care, and realizing that the world is tired and looking away, fingers in ears, returning to pre-pandemic living as fast as they can.

The unremitting symptoms of long COVID make moving on impossible. We can’t breathe. Our skin burns. Our vision is bleary. Our ears ring. We have rashes and tremors and bone-crushing malaise. We don’t sleep. We can’t work. Our thinking is impaired. Moreover, long COVID is characterized by more than 200 symptoms across ten organ systems that impinge on every aspect of our lives (Davis, et al., 2021).

Even a mild SARS-CoV-2 infection can result in long COVID. People who are completely asymptomatic develop long COVID—and so do children. Approximately 30% of all people who become infected with COVID-19 experience some form of long COVID. That is 1 in 3 people, or an estimated 25 million Americans, who are currently experiencing the debilitating symptoms of post-acute sequelae of SARS CoV-2 infection (Mazer, 2022).

Unfortunately, long COVID remains off the radar for most people and little is yet known about its cause, prognosis, or cure. In the United States, long COVID is not counted by the government, which means a lack of data pertaining to the prevalence, course of illness, or long-term implications. It remains difficult to find long COVID-informed providers and there is little to no available holistic care. Physicians are often quick to attribute the long-term impact of COVID-19 to psychological factors, such as anxiety or depression, rather than to the latent effects of a pathogen still causing harm somewhere in the body. The resultant self-doubt adds confusion and hopelessness to an already devastating situation.

Research may eventually shed light on long COVID, but in the interim, there are things that can provide benefit. Patients need documentation of long COVID (ICD-10-CM code, Post COVID-19 condition, unspecified, U09.9) in their charts, especially those who became ill with COVID in the first wave, before tests were available. Foregoing such documentation restricts patient admission into clinical trials and acceptance into long COVID clinics. Documentation of long COVID-related syndromes, such as POTS, dysautonomia, insomnia, neuropathy, and MCAS, is also needed.

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Most long COVID clinics have been established as "referral hubs" where patients are triaged and referred to specialists. What is required instead is individualized, interdisciplinary, integrated care at a single-stop with wrap-around services, such as the clinics that have been established for HIV. When multi-disciplinary specialists plus case managers develop holistic treatment plans, they are able to provide whole-person clinical care, continuity, and follow-up.

Finally, those with long COVID hold a great deal of wisdom in their lived experience which can provide critical insights with the potential to generate new understandings about long COVID. The importance of patient centricity has been long discussed but the actuality has been slow to emerge. Empowering patients as partners with their health care providers can be transformative, resulting in increased trust, better outcomes, individualized solutions, and more efficient care.

The omission of long COVID from the public health narrative deprives Americans of the intelligence needed to make informed decisions regarding the risks of various activities; and, prevents essential constructs and vocabularies from entering the mainstream social consciousness (Wenner & Ramirez, 2022). We need to talk about long COVID in order to understand the interconnected impacts of this disease process on the individual, the community, and society as a whole.