Long Covid Life

My Long Covid Life Belatina Latinx
My Long Covid Life

By now, you have probably heard the term “Long COVID” at least once. Maybe it was in a news story, from friends, or a healthcare worker. But what does that term actually mean, and — more importantly — how concerned do you and others in our community need to be? 

In this first weekly Long Covid Life column for BELatina, I seek to answer this.

What is Long COVID?

Long COVID-19 is a chronic illness triggered by a SARS-COV-2 infection. The “Long COVID” term was coined by Dr. Elisa Perego, an Italian archeologist who, like me, never recovered from COVID-19, which she contracted in early 2020. Unable to find answers from health organizations or providers, patients like us began to find one another online. Determined to find answers, patients banded together, creating support groups that quickly grew into research and advocacy organizations.

These groups eventually gained the attention of national and international health organizations. 

In March 2021, a year after many first-wave Long COVID patients had gotten sick, Dr. Anthony Fauci announced that the United States government was formally recognizing “post-acute sequelae of SARS-CoV-2 infection,” or PASC for short. The World Health Organization made a similar announcement, calling the disease “Post-COVID-19 Condition.” In the Spanish-speaking world, the condition became known as COVID Persistente, or Persistent COVID.

No matter what name is used, the illness is the same. 

What does Long Covid feel like?

The list of symptoms endured by those with Long COVID is long and might surprise people who still expect COVID to be only a respiratory disease. Although SARS-COV-2 is part of the coronavirus family to which the common cold also belongs, it appears to behave more like vascular coronaviruses such as the cat-inclusive viral disease, Feline Infectious Peritonitis.

Those with this illness have measurable damage to blood vessels and microscopic blood clots that resist treatment. This means blood vessels — particularly the smallest vessels that can become clogged by these tiny clots — can develop dysfunction. And remember: blood vessels are everywhere in our bodies.

Many with Long COVID also experience elevated levels of numerous autoantibodies, or antibodies, that attack the body’s cells rather than going after a virus. Research suggests the virus can change the way the immune system works.

In my own case, I have tracked more than 200 distinct symptoms over the course of 26 months. Others report similar mind-boggling numbers of symptoms. 

We are seeing some common ones, including cognitive changes and difficulties, absolute exhaustion, exercise intolerance, damage to the heart, liver, kidneys, eyes, brain, and other organs — but this is by no means a comprehensive list.

Who is at risk of getting Long COVID?

Long COVID is not rare, and everyone is at risk of getting it. Studies suggest more than half of all people who get COVID will still have symptoms after six months.

You do not have to be medically vulnerable to begin with. All age groups can get Long COVID. People who have been vaccinated can develop it too. You can contract this illness even if you have never had symptoms of acute COVID infection. 

The media and government in the United States have, until now, been pushing a dishonest COVID narrative, probably to make leaders seem successful and to keep the economy “open.” New research indicates 1 in 5 American school teachers have Long COVID; nearly 20 percent of teachers say they plan to leave the field because they are too sick to continue.

Many people who did not get Long COVID with their first infection are finding that they develop it with reinfections.

How does Long COVID impact Latinas?

According to the Centers for Disease Control, Latinos are impacted more than most other groups by COVID infections and economic hardships resulting from the pandemic. The Pew Center for Hispanic Research has explored what this means.

This difference in impact is not due to genetic or racial differences. Instead, systemic and institutionalized discrimination has led to lower pay, overrepresentation in essential jobs (which are more likely to involve contact with other people), less access to health care, more discrimination in healthcare settings, and greater marginalization of our communities.

Since Long COVID impacts more women than men, it can be surmised that Latinas bear a greater burden of Long COVID than some other groups of women in the United States.

How do I know if I have Long COVID?

If you have developed unusual new health problems in the past two years, you might have Long COVID. This is true even if you were never infected (that you knew of). Positive COVID tests should not be the only diagnostic tool for this disease. A good doctor should be able to assess your symptoms and run specific labs to make an educated diagnosis. Many doctors still don’t understand this. Push until you find one who does.

Where can I find more information?

This first column is intended to be a primer and answer the most basic questions you might have. Each week I will have a new column here about specific aspects of the disease. 

I recommend, in the meantime, that you join one of the great patient-led support groups online, where you will be able to find many resources.

My favorites are:

Patient-Led Research Collaborative

Body Politic

Long Covid Support