In It For the Long Haul

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Recently, I find myself contemplating how the novelty of COVID-19 has worn off. Eight months into this life-altering pandemic, I am used to the masks, the constant dryness of my hands from using hand sanitizer, and the regular Zoom-ing into each of my classes. I’ve realized that the ability to “adapt” to these circumstances while remaining personally unscathed from the virus, and even finding some normalcy in this new routine, is a privileged position to have. 

Many individuals — among both younger and older generations —  have the naive idea that the population fits neatly into two categories: those who are elderly or immunocompromised and need to completely self-isolate if they don’t want to end up on ICU beds; or those who are young and healthy and are able to rapidly recover from COVID. Many of us in the latter category may believe that contracting COVID means only a 2-week quarantine, after which we become magically immune and can carry on with normal life and seeing all our friends. 

These types of cases in previously healthy patients with no underlying conditions are one of the mysteries of the pandemic.

However, what is rarely discussed in COVID discourse, especially among young people, is the startling revelation that long-term health effects are not limited to severe COVID cases. Rather, the virus can produce life-altering effects on relatively healthy patients who only had mild cases of COVID and were often never hospitalized. These so-called COVID “long-haulers” who suffer from post-viral syndrome are a growing subsection of patients who experience lingering symptoms for weeks or even months after testing negative. Unlike the post-viral effects of other viruses, such as the flu, the list of post-viral symptoms is alarmingly long, encompassing everything from long-term loss of taste and smell to respiratory damage and post-viral malaise. Many long-haulers face damage to their hearts and lungs, including scarring and difficulty regulating their heartbeat due to the stress it has taken on their bodies to fight this virus. These types of cases in previously healthy patients with no underlying conditions are one of the mysteries of the pandemic; why is their recovery excruciatingly slow while other patients bounce back from COVID quickly?

Despite their relevance, long-haulers have largely been left out of the narrative. Daily COVID news updates focus on weekly hospitalization rates and the death rate, figures that long-haulers don’t fall into because many were never hospitalized. In fact, many long-haulers are doubted and questioned by friends, even medical professionals, who are in disbelief that they could still be feeling lingering effects from COVID. In fact, many individuals assume that long-haulers are just failing to cope with the anxieties surrounding the pandemic. President Donald Trump even tweeted “Don’t let it dominate your life,” playing into the precarious idea that everyone can get infected with COVID and then recover quickly.

I spoke to Laurie, a COVID long-hauler, about her experience dealing with the mental health effects of having the novel virus that won’t go away. Laurie tested positive for COVID four times over the span of two months, stunning doctors who could not explain why she was not recovering. Eight months after contracting the virus in mid-March, Laurie still has not regained her taste or smell and has been battling daily severe fatigue, despite her case of COVID being considered mild with no hospitalizations. Back in June, she joined a “COVID Long Hauler Round 1” Facebook support group, which includes members who got sick in February or March and have been sick for 180 days or more. The physical stress of losing strength, losing faith in the ability of your body, and having to learn a completely new way of moving in the world has been extremely difficult for many long-haulers. Laurie found herself asking, “Who am I now? Will I ever be the same as I was eight months ago?” Online support groups have been particularly beneficial in helping long-haulers cope with stress and frustration. It is a space to share their stories and have others relate to them. Many long-haulers have also sought out different forms of therapy and have felt the need to go on antidepressants.

There are also economic implications for being a long-hauler teamed with the stress of going back to work, as a lot of times employers don’t believe their employees when they claim they are still experiencing symptoms. Many full-time workers must reduce their hours or take time off of work to take care of themselves. These financial difficulties are intensified by the high costs of therapy and extensive testing that many long-haulers have to incur. 

The physical stress of losing strength, losing faith in the ability of your body, and having to learn a completely new way of moving in the world has been extremely difficult for many long-haulers.

Suffering from mental and physical health issues heightened by financial constraints, long-haulers are put in an exceptionally difficult position during the pandemic. Their difficulties are augmented by the fact that many of those around them — including friends, employers, and even doctors — are skeptical that they are still experiencing symptoms. In order to provide support for these long-haulers, we need to start by acknowledging and validating their experiences. 

Now, over eight months into the pandemic, researchers are increasingly focusing on the chronic effects that COVID-19 has on its survivors. Even as we see optimistic press releases from pharmaceuticals about promising vaccines, the pandemic is far from over for those that are suffering from post-viral syndrome. It is crucial that we recognize that life will not go back to normal for everyone and we need to change our assumptions surrounding how COVID affects individuals differently.

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