What They Don’t Want You to Know About Long COVID

With another Long COVID Awareness Day in the rearview, the U.S. drives on in blissful — but dangerous — ignorance.

By Megan Armstrong

The trips to the emergency room, the hospital stays, the doctor’s appointments, the medical tests, the days lost, and the tears I’ve shed over the past 18 months blend together. But I’ll never forget how small I felt when an ER doctor told me, “You need to get your psych under control.”

It was Jan. 4, 2025, and I had been to this emergency room several times since the bottom fell out. After my second COVID-19 infection, I developed debilitating body-wide symptoms. On Sept. 24, 2024, I went to bed overcome by nausea and lightheadedness, and nothing has been the same since. My body became unrecognizable to me, and I became unrecognizable to the world.

(wildpixel/iStock)

On this night, just over three months into my new reality, I went to the ER with chest pain. This doctor took one look at my chart, scoffed, and, with an unforgettable disgust in his tone, said, “Long COVID and POTS are just the latest catchphrase.”

I’ve since been diagnosed with long COVID, plus COVID-induced dysautonomia and mast cell activation syndrome. The simplest summarization is that COVID-19 damaged my nervous and immune systems, which dysregulated my digestive, neurological, and vascular functions. Last February, I wrote down all the symptoms I’d been experiencing for my former primary care doctor. He tossed the paper to the side. I asked how he planned to help me. He said, “Maybe you’ll just grow out of it.”

A little over a year later, I’ve grown exhausted of advocating for myself to no avail. I’ve grown disheartened by sitting alone in frightening ambiguity because it’s too uncomfortable for people to look at the COVID-19-sized elephant in the room.

Those doctors, among others, thought my suffering was all in my head. But the only ones playing make-believe are those who perpetuate the idea that long COVID isn’t a real threat to all of us.

These aren’t just catchphrases. They are life sentences.

March 15 was Long COVID Awareness Day. I, along with millions of others who are keenly aware of COVID-19’s wrath daily, have one question: Will long COVID stop being a life sentence in our lifetimes?

Living with long COVID is sort of like opening a Kinder Joy every morning. But instead of a delicious chocolate ball hiding a mystery treat, my inflamed body holds mystery symptoms. Trying to manage often feels like being trapped in an arcade with a demented Whac-A-Mole machine. On any given day, any combination of brain fog, fatigue, migraines, blood pooling, nausea, a sensation called “head-swimming” that is as unsettling as it sounds, inappropriate flushing, heart palpitations, myalgia, joint pain, or temperature dysregulation could be lurking inside.

The most difficult, destabilizing aspect of long COVID is the absence of a pattern or prognosis to orient around. Past medical breakthroughs, such as AIDS/HIV or polio, should be informing the present. For now, though, the long-term effects of COVID-19 remain a black box.

There are doctors who want to help. A compassionate gastroenterologist shook her head and looked at me with puppy-dog eyes when she muttered that many of her longtime, usually healthy patients “just aren’t the same” post-COVID. She had hope that long COVID would be the next fibromyalgia, and doctors would look back in a decade in disbelief that they ever dismissed it.

The problem in the United States is that for every person desperate to help, there is a more powerful person determined to eradicate resources.

Donald Trump handled the COVID-19 pandemic poorly from Day One. The country’s collective response was underwhelming. Some of it was inevitable human error in the face of a beast. Some of it was ignorance. Some of it was an unyielding loyalty to capitalism. All of it caused undue and unquantifiable harm. It was disappointing when President Joe Biden declared the COVID-19 pandemic “over” in September 2022. But it is despicable what Trump is doing in his second term.

Early last year, Elon Musk’s Department of Government Efficiency agenda decimated infrastructures and institutions across the board, including the Centers for Disease Control and Prevention and National Institutes of Health. Conspiracy theorist Robert F. Kennedy, secretary of Health and Human Services, deepened the crater, when he fired all members of the vaccine advisory committee by June.

“The COVID-19 pandemic is over, and HHS will no longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago,” a Department of Health and Human Services spokesperson told Science last March.

The HHS statement was in response to Science revealing 29 grant termination letters sent by the National Institute of Allergy and Infectious Diseases, including grants for research “to develop improved COVID-19 vaccines and to address Long Covid, the mysterious lingering aftermath of some SARS-CoV-2 infection.”

That same month, Politico reported that the Trump admin planned to shutter the HHS’ Office of Long COVID Research and Practice. NIH cuts “disappeared the nearly $2 billion invested” in the Researching COVID to Enchance Recovery initiative, per Rolling Stone.

Last week, The Sick Times conducted a nationwide survey and found that, of the 400 hospitals and clinics offering long COVID care in 2022, only 26 confirmed they were still providing long COVID care in 2025.

The Sick Times also cited a large retrospective cohort study preprint, including records from 143,000 people, that revealed, “Over five years, total costs for people with long COVID were $7,124 higher per person than those without.”

My first year with long COVID cost tens of thousands of dollars. After the financial burden clamped down and burnout seeped in, I noticed myself weighing the pros and cons of seeking care. Can I afford to sink even more money into this? What are the odds I’m actually helped? Are those odds greater than walking out of yet another medical building dejected and numb?

Of course, the Trump admin’s cruel constriction of public health resources and commitment to misinformation don’t hurt only the long COVID community. Medical trauma does not discriminate. All illnesses are harrowing, and 1-to-1 comparisons are as impossible as they are unnecessary. But, in my experience, there is a particular disorientation and isolation that comes with having your entire existence upended by a politicized, taboo virus.

Many people flinch at the mere mention of COVID, speak about it in the past tense, or find comfort in believing what happened to me won’t happen to them. I should be a cautionary tale — a nudge to take all available precautions — but it’s easier to view me as an anomaly.

Irish biorisk analyst Conor Browne explained why that’s a mistake:

“In effect, 2019 has become the status quo that almost everyone needs to cling to. This need is pathological in nature.

As such, fulfilling this need requires a shared societal agreement to embrace vast cognitive dissonance. Those who choose not to be part of this agreement will, inevitably, be deemed as having a mental health condition (Foucault understood this phenomena very well indeed).

Remember, then, that the tools to both prevent and mitigate infection are now no longer just tools; they are powerful symbols that disrupt and challenge the aforementioned societal agreement. This is why people react so very strongly to them. React irrationally to them.

Remember also, however, that, simply put, the virus doesn’t care. It is incapable of caring. It is a molecular shark that wants to make more of itself. That’s all it is. And regardless of human desires for an illusory status quo, it will keep killing and disabling people.”

The effects of COVID hide in plain sight. Still, a large swath of society swayed by the likes of MAGA and MAHA looks away. Unfortunately, blissful ignorance has never been an effective strategy.

The calendar has turned past Long COVID Awareness Day, but I can’t move on. I am left to wonder how many more will come and go before acknowledging that COVID and its wreckage is seen as common sense rather than an act of defiance.

I wish I could leave you with a tidy bow of hope and resilience. I have been resilient. I want to have hope. But, as Swedish activist Greta Thunberg said, “Instead of looking for hope, look for action. Then, the hope will come.” So, I need to see action. Until then, I guess a better future is just all in my head.

Megan Armstrong is a freelance journalist, podcast producer, and perpetual content consumer. Her work has appeared in Billboard, Boardroom, Esquire, GQ, GRAMMY.com, NYLON, Teen Vogue, The Kansas City Star, The Hollywood Reporter, UPROXX, and elsewhere.

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