Emerson Wheeler: We are failing the many people struggling with long Covid

This commentary is by Emerson Wheeler, a public health professional specializing in health equity for the disability community and a graduate student at the University of Vermont. They are a public speaker and consultant for organizations looking to improve workplace inclusivity, accessibility and culture. In their free time, Emerson reads tons of books and explores Vermont, looking for wheelchair-accessible trails and adventures. 

In 2020, I began my third year of medical school at UVM during what many people took to calling an “unprecedented time.” Our clinical rotations were delayed, and then shortened, due to the Covid-19 pandemic. It was a scary time because there was so much we did not know about the SARS-CoV-2 virus.

There were also a lot of unknowns about what was going on with my own body. I had ignored my symptoms until I couldn’t deny them any longer. I was losing function in my legs, fainting outside patients’ rooms, and experiencing migraines and concentration and memory problems. I spent my little free time desperately searching for answers. 

Doctors watched me lose more than 25 pounds in the span of only a few weeks, saw my shoulder dislocate in front of them, gasped as my heart rate changed drastically before their eyes, and still repeatedly insisted it was all in my head (it was not) and that there was nothing they could do (there was). I felt scared, ashamed and alone most of the time.

Whatever you want to call it — a limbo, a purgatory, a void — the waiting periods between symptom onset, diagnosis and treatment are excruciating. They are times filled with anxiety, fear, shame, guilt, self-blame, and eventually anger and grief. 

They often also involve months of waiting for appointments and then lots of smiling, encouraging providers reassuring you that your results “look normal” without any acknowledgement that “normal” results can be devastating for someone who feels anything but.

As a public health professional specializing in health equity for disabled people, and as a disabled person myself, I see the depth of pain many long Covid patients are struggling with right now. I regularly meet with Vermonters who are experiencing long Covid in an effort to get them what they need.

Many “longhaulers” have lost their jobs, their health insurance, their houses, their families. Many are spending any extra money they have on out-of-state travel in a desperate search for quality medical care. Parents are facing a future in which they may not get to teach their kiddo how to ride a bike or walk their daughter down the aisle at her wedding. 

Folks who relied on physical activity for mental wellness are now faced with a new reality: that pushing themselves hard enough to walk up the street may leave them bedridden for days, or even weeks. People have lost their faith in the system that was supposed to have helped them. They’ve lost their dreams for the future, their identity as a person in this world. Most are struggling — financially, emotionally and physically — to do things that came easily to them just months ago. These are our fellow community members, and all of them need our help.

Studies have found that anywhere from 10 to 30 percent of people infected with the SARS-CoV-2 virus end up developing long-term symptoms, and recent data from the Centers for Disease Control and Prevention found that one in five people who have been infected with Covid-19 have some form of long Covid. 

Long Covid can occur after any Covid infection, even a mild or asymptomatic one. Additionally, a recent study in Nature Medicine found that vaccination decreases risk of long-term symptoms by only around 15%. All of this means that there are likely thousands of Vermont residents struggling with these same issues right now, wondering what is wrong with them, and feeling very alone.

Internalized ableism — that voice inside your head that asks “What’s wrong with me? Why can’t I do this? Why is this so hard? I must be stupid/weak/etc.” — is a powerful player in depression and suicidal ideation for disabled and chronically ill people. It’s incredibly difficult not to feel like a burden when you’re struggling to work enough to contribute to your household, or when your search for medical care consistently results in enormous bills and no answers.

Charlie Vallee was born and raised in Chittenden County. He was 27 years old and worked hard every day as the head of the Defense Intelligence Agency’s chief counterterrorism group. I never met Charlie, but in reading about him, I get the sense that he was a dedicated, intelligent and caring young man with a lot of incredible potential. 

Charlie died by suicide this year after contracting the SARS-CoV-2 virus in January and subsequently struggling for months with long Covid. He may have felt alone, but he was not: Survivor Corps, an advocacy group for long Covid patients, found that 44% of its membership have considered suicide. Research in Britain and Spain has found a six-fold increased risk of suicide among patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), another post-viral illness with very similar symptoms to long Covid, when compared with the general population. It’s clear that any talk of a suicide epidemic, without acknowledgement of this population is not painting a full picture. 

There was so much we didn’t know at the beginning of this ongoing “unprecedented time”; however, it’s almost 2023. The SARS-CoV-2 virus is one of the most studied pathogens of all time, and there is a lot we know about it now. Just as ignorance of the law does not excuse criminal behavior, ignorance of the science does not excuse poor medical care. 

This is a biological disease and we actually know a whole lot of the science behind it. We also know that there are many comorbid disorders that occur with it, many of which have options for symptom management. Some of these disorders include but are not limited to: postural orthostatic tachycardia syndrome, myalgic encephalomyelitis/chronic fatigue syndrome, autonomic dysfunction, autoimmune diseases, and much more.

Studies coming out this year have indicated that the very common “brain fog” experienced after infection may be the result of poor blood flow to portions of the brain. There is also plenty of evidence to support changes in the blood’s ability to clot after even mild or asymptomatic infections, which drastically increases risk of strokes, heart attacks, pulmonary embolisms (blood clot in lungs), and deep venous thromboses (blood clot stuck in a vein). 

International research increasingly points toward “microclots” as another suspect: tiny, almost invisible blood clots that do not show up on typical coagulation tests but are clearly visible under fluorescence or bright-field microscope. 

Neurological research has found that the virus preferentially infects and kills astrocytes — the “garbage-people” of the nervous system, cells that take away the waste that neurons produce in order to keep the brain’s environment healthy. Killing astrocytes means that brain cells, living in an unhealthy environment full of increasing amounts of their own waste, often end up dying too. 

Even more recent research has found that this virus downregulates the p53 gene, which is an incredibly important gene for cancer prevention. Downregulation of this gene results in uninhibited cell replication — also known as cancer. Clearly, we know a lot about what can happen after even a mild acute infection.

Most of our “health care heroes” continue to be incredibly overwhelmed and burned out. Understandably, they often take the easy route with these patients, tossing out a “we don’t know enough about this” or “we don’t treat patients with long Covid here” before bouncing the patient to another provider with similar platitudes. 

Providers are not set up for success, and especially not with patients whose problems are not clear-cut. They need easily accessible ways to learn the science behind the comorbid disorders associated with long Covid and the treatments that have helped patients with these conditions.

Charles Vallee’s grieving parents are quoted in the Vermont Community Newspaper Group as saying: “not understanding what long Covid did to our son is almost as bad as the shock of death.”

If someone were to tell you they have cancer, you probably imagine the chemotherapy or radiation. You can probably imagine the fear they’re feeling about their future. Can you imagine what it’s like to have long Covid? Why not? If you know more than five people who have had a Covid infection, you probably know someone who is experiencing, or has experienced, long Covid. 

If you’re a provider, we know you’re doing your best. 15 minutes is barely enough time to see a healthy patient, let alone a patient with complex chronic issues. You’re doing an incredible job in a system set up for you to fail. 

However, these patients need your help. Repeatedly punting them back into the void is doing far more harm than you may realize. Vermont only has so many providers, and many patients don’t have the means to travel out of state for care. Please, be open to saying “I don’t know enough about this, but let’s learn together.” That’s all these patients need to hear.

If you’re a community member, reach out to your friends and family. Try to be honest about your own struggles if you’re having them. Know that if this happens to a friend or family member, they may be so lost in their own shame and guilt that they may not share their struggles with anyone. The best thing we can all do is open the floor for more conversation about this, without blame or invalidation. 

We need federal commitment to increased, ongoing investment into long Covid. We need legislation that helps these families keep their houses, jobs and lives. We need public health campaigns focused on increasing awareness of this disease and its impacts, so people spend less time in the devastating “what is wrong with me? I must be weak, pathetic, stupid” stage, and more quickly move to the “there’s a name for this, there are other people dealing with it, and there are things I can try manage its symptoms and accommodate my needs” stage. 

Most importantly, we all owe it to people like Charlie to stop saying “I’m sure you’ll be fine” and start saying “I believe you. How can I help?”

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Tags: a disabled person myself, Charlie Vallee, emerson wheeler, long Covid, longhaulers, one in five people with Covid-19 have long Covid, thousands of Vermonters struggling, we need to know more

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