5 years later: What it's like living with long COVID

At a time when the world seems eager to declare the COVID-19 pandemic a closed chapter, I — along with millions of other Americans — continue to confront a relentless, invisible enemy that has redefined every aspect of my existence: long COVID.

According to the Centers for Disease Control and Prevention, long COVID — with more than 200 symptoms — is defined as “a chronic condition that occurs after SARS-CoV-2 infection and is present for at least 3 months.”

Research published in Nature Medicine indicates that around 400 million people globally have experienced long COVID, “which is estimated to have an annual economic impact of approximately $1 trillion — equivalent to about 1% of the global economy.” In the United States, over 29% of adults with a prior COVID-19 infection said in an August 2024 survey that they’ve had long COVID.

It’s been five years since I first came down with symptoms of the coronavirus. In January 2020, before we knew much about the new virus, I was diagnosed with walking pneumonia by the National Health Service in London, where I was living at the time. Soon after, I began noticing nonrespiratory symptoms: gastrointestinal distress, brain fog, fatigue and autonomic nervous system dysfunction.

By May, the excruciating fatigue and unrelenting brain fog remained, and I was diagnosed with post-viral syndrome — the precursor diagnosis to long COVID. Two months later, I was on a plane headed for the U.S. in an effort to recover with the help of my family. It wouldn’t be until 2021 that my doctor could officially diagnose me with long COVID.

The quest to get better has had its ups and downs, which I’ve documented at length for Yahoo News.

At the time, each day was a battle against exhaustion and pain as doctors struggled to pinpoint the cause of my lingering illness.

Today, I am no closer to finding the answer. But I am closer to finding peace with being a long-hauler.

The improvements I’ve experienced since 2020 are tempered by the sobering reality that I may have grown accustomed to living with a chronic illness. I often wonder if these adaptations represent true recovery or are merely a way of coping with reality.

Like me, experts are also stumped as to the true cause, but they have a few ideas — including autoimmunity, chronic inflammation, viral persistence and microclots in the blood.

The lack of a clear culprit has been a source of immense frustration for patients who’ve resorted to extreme treatments and holding on to hope even as uncertainty looms large. I’ve experimented with countless strategies to manage my lingering symptoms — dysautonomia, postural orthostatic tachycardia syndrome (POTS), fatigue, brain fog and chronic pain — to regain a semblance of normalcy.

Long COVID clinics

While the world was moving on from COVID-19, I was spending time in and out of specialized long COVID clinics in the U.S. and Italy.

These centers offered comprehensive diagnostic workups and provided me with training on how to cope with the unpredictable nature of this condition.

Though it was initially hard to get into these centers due to increased demand, it felt like kismet once I did. I met my people. I got the help I was looking for. I was not told “It’s all in your head” — a common refrain that long-haulers hear from uninformed doctors.

Research

While the world was moving on from COVID-19, I was busy being a medical guinea pig. I’m currently enrolled as a subject in a long COVID research study at the renowned Johns Hopkins University, and I’ve taken part in a study by Mount Sinai looking at the effects of the illness on endocrinology.

Being included in these studies makes me feel seen and gives a sense that some good may come to others from my misery.

Pacing

While the world was moving on from COVID-19, I was learning about the critical importance of pacing myself. I can’t tell you how many times I’ve experienced energy crashes, which required immediate rest followed by a long recovery. As a result, I now find myself saying “no” more often to protect my energy and set boundaries. This is no easy task for someone who cherishes time with his friends.

In Italy, I also embraced “dolce far niente” (the sweetness of doing nothing), which allowed me to take moments to rest, savor a healthy meal and acknowledge my physical limits without agonizing guilt.

In addition to these lifestyle changes, I incorporated light exercise into my routine. Walking, swimming and biking became more than just physical activities — with each step, stroke and pedal, I felt a surge of hope. They were symbols of progress.

While the world was moving on from COVID-19, I found that sharing my stories on social media sites was a blessing.

In a long COVID Facebook group, strangers wrote to me with their own tales. Soon, a community developed. We shared tips, validated each other’s experiences, traded horror stories and reminded one another that we were not alone.

Meanwhile, I received an outpouring of support from friends, family and important people from the past — like my sixth grade English teacher, Jennifer O’Hare, who frequently checks up on me.

Five years later, I stand at a proverbial crossroads. While I do feel better than I did in the earliest days of the pandemic, I’m aware that my journey is far from over. In many ways, it’s just getting started.

Looking forward, I am filled with cautious optimism. Research is ongoing, advocacy continues, and as patients, we must keep pushing for recognition, treatment and support. We need more clinical trials, more doctors who specialize in post-viral conditions and more understanding from society as a whole.

We are not lazy. We are not making this up. We are simply trying to survive in a world that doesn’t yet know how to heal us, and that has moved on from COVID-19.