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Staying Alive

NYC Has Left People With Long COVID Behind

Living with long COVID in NYC means living an increasingly lonely existence.

A person wearing a mask with long COVID navigates a chaotic NYC street scene.

Illustration by Emily Bernstein for Hell Gate.

I thought I was getting better. After months of battling long COVID, I felt well enough to venture out for a backyard lunch with my family. But as I stood up to leave, my head started swimming and my body turned to lead, my arms and legs barely able to move. My brain struggled to form words as pain shot through my chest and waves of nausea rolled through me. I had to be helped into an Uber home, where I couldn’t get out of bed for hours. It was the beginning of a long decline.

Things like this happen because of a COVID-triggered disorder called POTS, or postural orthostatic tachycardia syndrome, which causes my heart rate to spike when I stand up due to dysfunction in my autonomic nervous system. That’s the system that controls heartbeat, blood flow, breathing, and other functions the body performs automatically—all the stuff you never think about until it stops working. 

As a reporter, I covered the pandemic from the early days of constantly wailing sirens, field hospitals in Central Park, and morgue trucks in the streets. All the while, I did my best to protect myself, as the scars of those days stayed with me. But the virus finally got me in July 2022, well after we were supposed to "have the tools" to make COVID no big deal. 

I realized that something wasn’t right after my flu-like COVID-19 symptoms had cleared and I attempted to go back to working from home. I made a cup of coffee and sat down at my laptop as usual, but within an hour or two my heart rate was spiking, and I was so dizzy I could no longer sit up. A couple days later, I landed in the emergency room. 

I’ve been sick ever since. In January, I made the difficult decision to take a step back from my job as a New York politics reporter, to focus full time on my recovery. I'm now one of up to four million Americans out of work due to long COVID. 

In the past year, I’ve seen three cardiologists, two neurologists, two rheumatologists, an immunologist, two ophthalmologists, a pulmonologist, two orthopedists, three primary care doctors, two ER doctors, and two urgent care doctors. 

As soon as I wrap my head around one symptom, another one seems to crop up. My head throbs and fills with pressure, and I hear pulsating in my ears. My vision gets blurry. I get short of breath just walking up the subway stairs. My hands tingle, and my fingertips are shriveled up like I’ve been in the tub for two hours. I’ve lost the ability to regulate temperature, and have found myself shivering in an un-air conditioned room in 95 degree weather and sweating through my sheets at night. My hair is falling out, and I’ve lost twenty pounds. 

I haven’t spent an entire day upright since July. 

To live with long COVID is to live an increasingly lonely existence. 

We’re supposed to believe that the COVID-19 pandemic is over. President Joe Biden said so, and ended the nation’s public health emergency last month. Not to be outdone, the World Health Organization ended the global health emergency it declared in 2020, even while warning that the pandemic is ongoing. The CDC will no longer track COVID transmission levels, all the better to pretend there’s nothing to see here. 

Here in New York, just about the only time Mayor Eric Adams mentions COVID-19 is to roll back another protective measure, most recently the vaccine mandate for City employees. Governor Kathy Hochul didn’t even bother with an announcement when lifting the mask mandate in hospitals and doctors offices. The City Council is trying to gut outdoor dining, one of the few remaining lifelines for the high-risk. Even medical settings are no longer safe. Last month, the City closed its network of free walk-in vaccine and testing sites—one of the great achievements of public health infrastructure of the modern era—a move that got next to no pushback. 

But you can’t just will a pandemic out of existence, and this one isn’t over. COVID-19 is still here, still widespread, and it continues to claim victims everyday

Here’s the thing about long COVID: It’s really common. The CDC estimates that one in five adults who survived COVID has experienced lasting symptoms. Yes, vaccination reduces the odds, but only modestly. Paxlovid does too, but again, not by that much. In the post-vaccine, Omicron era, the odds of getting long COVID from an infection today are about one in 10. I got every shot they would give me, quickly took Paxlovid, and ended up with long COVID anyway. People do recover, but 85 percent of patients who have symptoms two months after COVID are still symptomatic after a year. Eight in ten people with long Covid say the disease limits their ability to carry out daily activities. Some long haulers who got sick in March 2020 are still disabled three years later.

Public officials aren’t warning New Yorkers about the risk of long COVID, which seems like the least they could do before leaving us to fend for ourselves. If you do get it, there is no authorized treatment. Doctors won’t be able to fix you. Not a single drug has been tested and approved for the treatment of long COVID, nor for the specific conditions that long haulers most often develop—POTS and ME/CFS. Scientific research moves slowly under the best of circumstances, but the $1.15 billion allocated by Congress to study long COVID has accomplished shockingly little

Many people get no medical care at all, as doctors dismiss their symptoms or plead ignorance. But even for someone who knows the system and has good insurance and financial resources, the options are slim. Early on, one doctor told me a few weeks of intense hydration would get me back to good health—probably. (It did not.) "We know nothing about long COVID," another doctor confessed. The city has a number of dedicated long COVID clinics, but their waiting lists are months long, and with no approved treatments, the best they can do is send you to rehab, refer you to a few specialists who vary in quality, and tell you to hope for the best and come back in six months. 

If you get really lucky, as I have, you may eventually find doctors who are knowledgeable about post-viral illness and willing to try various treatments—all unproven and off-label. So far, I’ve tried a dozen different medications—including a heart medication I buy from Canada because it costs $550 with insurance at my local Duane Reade—but none have been a game changer. In addition to choking down all those pills (and there’s a lot of choking involved), I guzzle fluids with electrolytes, take salt tablets, wear compression tights, go to physical therapy, do special exercise routines, monitor my heart rate and blood pressure, do breath work, record my daily symptoms, and put compresses on my eyes. I'm gradually getting better at managing my symptoms, and getting more active in spite of them, but I have a long road to recovery, if it ever comes.

I, like other long COVID patients, feel abandoned by our leaders. Public officials have, on top of sweeping all the people still dying from COVID under the rug, all but ignored the toll of long-term illness as they rush to turn the page on the pandemic—offering little in terms of treatment, or prevention for the many more who will fall ill as COVID is allowed to spread unabated. 

We need both funding and a sense of urgency to develop effective therapeutics, better vaccines to prevent transmission, and options to participate in society safely in the meantime. At a bare minimum, our elected officials should be sounding the alarm to warn the public about long COVID so people can truly understand the risk they’re taking with each infection and make decisions accordingly.

To live with long COVID is to live an increasingly lonely existence. Every day my world gets a little smaller, as most of the people in my life return to a "normal" that isn’t an option for me. If I have any hope of recovery, it’s likely to be snatched away if I get COVID again—something that feels more and more impossible to avoid as every effort to contain the virus is abandoned.

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