COVID-19 is a diverse illness. Some have no symptoms (asymptomatic), while others have flu-like symptoms. In the worst-case scenario, mechanical ventilation or death is a grim reality. A number of factors are theorized regarding why COVID-19 impacts people differently. Many people like myself are not sick enough to need mechanical ventilation or be hospitalized long-term, yet have been sick at home for months.
I remember back in March collapsing on the bathroom floor, suffering from severe shortness of breath and chest pain, begging God not to let me die. Most importantly, I pleaded that my two little girls still needed me.
My life was thankfully spared that night, but the next day I updated my last will and testament to ensure my daughters would be taken care of in the event of my death. My video diary chronicles my experience to warn others about how awful COVID-19 can be to a young healthy person.
Nearly five months later from experiencing my first COVID-19 symptoms, and I’m still under the care of a neurologist, cardiologist, pulmonologist, urologist, infectious disease specialist and a gastroenterologist. I belong to a hidden group of people who suffer from post-viral syndrome. I have experienced doctors who didn't take my struggles with COVID-19 seriously. It took a lot of work to assemble a good medical team. My next obstacle is economics, because being sick for so long means the possibility of being forced into short-term disability and taking a pay cut. The most upsetting aspect about my situation is that doctors cannot tell me how long I should expect to be sick.
Post-Viral Syndrome Awareness
People might continue to have health complications from COVID-19 months after recovery. The lingering chronic effects after recovering from acute COVID-19 symptoms is what is considered post-viral syndrome. Over 100 symptoms have been reported, some including memory problems, brain fog, heart complications, hair loss, kidney and liver issues.
Chronic fatigue is a common complaint for most people suffering from post-viral syndrome. The fatigue that I experience is not just a feeling of being tired. It's a feeling of having run a marathon even though all I might have done is taken a shower. I feel pin and needle tingling sensations in my arms and legs.
According to the Centers for Disease Control and Prevention (CDC), even young healthy people are not immune to getting post-viral syndrome.
It is striking that the public was not warned early on that acquiring post-viral syndrome could be a possibility, given that we know from past experience that lingering health problems were also identified with Severe Acute Respiratory Syndrome (SARS), which is a type of coronavirus, with patients experiencing Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This kept many sufferers out of work for almost two years. Middle East Respiratory Syndrome (MERS), which is also a coronavirus, showed the same post-viral pattern as SARS. As such, an uptick in chronic health problems in recovered COVID-19 patients should be expected.
However, unlike with SARS or MERS, the public health impact of post-viral syndrome is going to be disproportionately evident in minority communities, given how hard COVID-19 impacted African American and Latinx people. Doctors have historically underdiagnosed chronic fatigue in Black people, which means that without increased awareness, a lot of minorities are not going to get the help they need.
Online Support Groups Saved Me
Almost all people, both Black and white suffering from COVID-19 long-term, share the complaint of being treated as though post-viral syndrome is a mental health issue.
In response to this, people suffering from post-viral syndrome are turning to online support groups. The online support groups are helpful because many doctors are not aware COVID-19 Long Haulers exist. I was the first social epidemiologist in Texas to be interviewed about my struggle with post-viral syndrome. Others, including Alyssa Milano and Professor Garner have spoken out as well.
The online groups go by the name COVID Long Haulers, and there is a specific group for BIPOC women. Some women in the BIPOC group describe horrific experiences at the ER, and have reported needing patient advocates.
Job Loss and Pay Cuts
Data shows Black employees experienced record unemployment rates since the start of the pandemic. With the exception of Latina women, Black women have experienced the highest unemployment rate since March, as compared to all other races and genders.
Black women are twice as likely to be impacted economically from COVID-19 as compared to white men. This is because Black women make up a huge proportion of essential workers. They are also overwhelmingly represented in employment sectors that do not provide sick leave, and do not offer the health protective factor of the ability to work from home at the same rates as their white counterparts. The Economic Policy Institute estimates that Black employees are “60% more likely to be uninsured” as compared to white employees. This suggests that there will be huge inequality with connecting people suffering with COVID-19 or post-viral syndrome to adequate healthcare.
Hospitals received a substantial bailout for COVID-19 through the CARES Act. However, this government aid was not fully extended to COVID-19 patients. People with post-viral syndrome will need months and possibly years of medical care. As a professor, I have generous health insurance, yet COVID-19 left me with thousands of dollars in medical bills that are not covered by my insurance. Like many people suffering from post-viral syndrome, I might have to go on short-term disability, which means a pay cut in a period when I need my full paycheck most.
Employers have the power to impact an employee’s health. Penalizing employees financially for contracting COVID-19 and post-viral syndrome is not the answer. Employers, government, hospitals and insurance companies need to catch up to the economic consequences of COVID-19 and get creative in providing modifications. Economics is a big driver for health, especially for single mothers. Minorities are not only disproportionately losing the battle with their health, but also with their employment during this historic pandemic.