Five Years of Pain, Fatigue, and Gaslighting: Life With Long Covid

It’s been almost five years, and I’m still waking up in a body I don’t recognize. I was among the first wave of New Yorkers who contracted Covid-19 in the spring of 2020 — during the early days of lockdowns, before we were even wearing masks — and like the tens of millions of Americans with Long Covid, I never recovered. 

Covid-19 wreaked havoc on my body, from my head, where visible bald patches were once a reminder of where my hair fell out in large clumps, to my toes, which tingle, burn, and go numb from neuropathy. While some of my physical issues have improved over time and with treatment, others — like tinnitus, constant sinus pain and pressure, shortness of breath, joint pain, migraine headaches, and debilitating fatigue — continue to dictate nearly every aspect of my life. 

I’ve never fully come to terms with the fact that this is my body now, but what’s even harder to wrap my head around is how little has changed for those of us living with Long Covid. Yes, doctors have gotten better at helping us manage many of the chronic condition’s more than 200 symptoms, but there’s still no test or treatment for Long Covid. Today, people view Covid-19 as an inconvenience of the past, rather than the biggest mass disabling event of our lifetime that continues to affect millions of people. 

Our erasure goes back to the early days of the pandemic, when we were fed the false narrative that contracting Covid-19 ended in one of two ways: either fully recovering in two weeks, or dying from the infection. At a time when everything was scary and unfamiliar, it was easier to believe that these were the only outcomes. But the inconvenient reality was that for many of us, two weeks came and went, yet we were still too fatigued to stand up for more than a few minutes at a time. Our headaches and body aches lingered. We had trouble thinking clearly. Our elevated heart rate kept us up at night. We still struggled to take a truly deep breath. And when we tried to get help, we were dismissed.

If you want to hear horror stories about medical gaslighting, talk to someone who developed Long Covid in 2020. I’ve heard everything from “It sounds like your symptoms are psychosomatic,” to “Have you tried exercising?” to “You’ll feel better if you lose weight” to “Everyone is dealing with fatigue and brain fog these days — not just you.” Evidently, it was easier for doctors to invalidate our concerns than admit that they didn’t know how to help us.

As the pandemic raged on, Long Covid remained conspicuously absent from public health messaging. Officials had a duty to warn people that Covid-19 could be more than a harmless viral infection, and potentially lead to a serious, and in some cases, disabling or life-threatening chronic condition. But instead, we’ve been led to believe that Covid is now just a minor inconvenience that shouldn’t stand in the way of going to work or socializing — with or without masks. 

Five years on, agencies like the Centers for Disease Control and Prevention (CDC) and World Health Organization (WHO) do acknowledge that Long Covid exists, but don’t pass up the opportunity to minimize its impact. While the CDC notes that “ongoing symptoms and conditions can last weeks, months, or even years after Covid-19 illness,” the WHO claims that symptoms “typically” improve within four to nine months. In reality, research has indicated that living with Long Covid for years is the rule, not the exception, with one study published in The Lancet finding that fewer than two percent of people actually recover. In some cases, Long Covid can be fatal, contributing to conditions like heart disease, cancer, stroke, Alzheimer’s disease, and chronic lower respiratory diseases, among others. People living with Long Covid are also at increased risk of dying by suicide. A CDC analysis of death certificates from 2020 through 2023 found that the condition played a role in 5,035 deaths, Medscape reported in January 2024.

There was a time when we had hope. Back in December 2020, Congress appropriated $1.15 billion to the National Institutes of Health (NIH) to study the long-term effects of Covid-19, including Long Covid. Initially, it felt like progress was within sight. But as we learned more about the NIH RECOVER Initiative, it became clear that the misguided research program was failing to achieve its goals of understanding, diagnosing, preventing, and treating Long Covid. In addition to awarding grants to researchers who lacked experience studying or treating post-infectious chronic diseases, RECOVER faced criticism for funding exercise and pacing trials that could potentially harm people with Long Covid, rather than studying promising novel treatments.  

Things are even more bleak now. During his Jan. 29 Senate confirmation hearing, Secretary of Health and Human Services (HHS) Robert F. Kennedy Jr. agreed to “commit to prioritizing Long Covid research” and “collaborate with healthcare providers, researchers and effective communities to better understand and mitigate Long Covid’s impact.” Three weeks later, he stood by as the president disbanded the HHS Advisory Committee on Long Covid via executive order.

Everyone with Long Covid — with any chronic condition, really — is grieving. We’re all mourning something, whether that’s our old body or brain, our ability to work or socialize, our financial stability and housing, relationships that are now broken or strained, or simply the person we used to be. There’s also an element of survivor’s guilt. As disruptive and inconvenient as living in a post-Covid body can be, at least we have that opportunity — unlike the more than 1.2 million Americans who have died from Covid-19. Living with any chronic health condition can be a lonely and isolating existence; but it’s especially alienating to live with one that reminds people of a pandemic that they’d rather forget.