Fiona Lowenstein - The Long COVID Survival Guide: How to Take Care of Yourself and What Comes Next—Stories and Advice from Twenty Long-Haulers and Experts

Fiona Lowenstein

It was March 10, 2020, and a warm breeze was starting to soften the cold New York City airfake spring, we called it, because true New Yorkers know spring cant really be counted on until at least May. Still, I remember feeling excited about the dawning change of seasons as I hurried home from my afternoon fitness class to meet a friend for dinner.

At the yoga and fitness studio where I taught part-time, people were just starting to talk about the new virus spreading in China, and now Italy, but no one seemed especially concerned. By March 10, at least one case of community spread had been confirmed in New York City, and as an added precaution, Id started carrying hand sanitizer and antibacterial wipes. I wouldnt be doing any hands-on adjustments, I explained to my studentsjust in case.

Just in case was a phrase that had started increasingly tickling at the back of my brain that montha fleeting feeling of fear that briefly caused me to wonder if I should stock up on toilet paper or cancel my dinner plans, but which I quickly combated with the anti-anxiety mantras I embraced to manage my fast-paced city life. So, I didnt cancel my plans. Instead, I repeated something Id heard that morning on my meditation app: I told myself to stop what if-ing. Then, I hurried home, showered, and prepared to host my friend, Sabrina, for dinner.

Sabrina and I had met in a college feminist comedy troupe, but in many ways, it felt like wed known each other our whole lives. We were both only children, raised in New York City, whod lived in Hells Kitchen as kids and attended a mix of public and private schools on financial aid. At college, we shared a major, extracurricular interests, and even the same scholarship benefactor. After graduating, Id launched Body Politic, a queer feminist wellness collective and events series, and Sabrina had quickly come on board as a co-leader, organizing events and helping to launch a Body Politic blog. On that particular Tuesday night, we planned to do what we loved: cook, eat, and brainstorm new creative ideas.

When Sabrina arrived, we talked about the coronavirus, discussing possible outcomes, and considering ways weas young, seemingly healthy peoplecould support others at greater risk. We agreed that this health crisis would be important to address through Body Politics work. But after several hours of FaceTime meetings with other members of our team and more than one course of our homemade cucumber salad and meatballs, Sabrina suddenly became very pale. She said she felt sick. Just in case, we cut our evening short, and Sabrina went home to rest.

Those of us who became sick with COVID-19 in March and April of 2020 in the United States often call ourselves first-wavers, even though we now know there were waves of American patients that predated the confirmed cases that spring. We use this term because it helps us identify one another and speak about the unique experiences we had as some of the first people to know wed been infected.

Getting sick with COVID-19 in March 2020 in New York City was not an unusual experience (so many people had been infected by the time I was hospitalized that health care staff told me the virus was likely circulating on the subway and in the streets). But it was an isolating experience. News headlines and public health agencies told us that as young people without known comorbidities, we had nothing to fear. I trusted this advice, until I couldnt.

On the evening of March 13, 2020, I began to develop a fever and headache. The following day, I had a cough. Two days later, I was struggling to breathe. A borough away in Brooklyn, Sabrinas case was also progressing. But, unlike me, Sabrina didnt have a trusted primary care provider. We both had to fight to access telehealth appointmentsappointments that proved useless in providing us with information or treatmentbut I had a PCP whod known me for years. When I began to rapidly decline, she urged me to seek help at an emergency room and called ahead to let them know I was coming.

I was hospitalized because I had severe shortness of breath. But there are other factors that likely helped me get admitted: I had a doctor vouching for me, I was accompanied by my partner who advocated for me, and I went to the hospital a couple of days before it became completely overwhelmed. I am also white, thin, and young, and I did not have a history of preexisting conditions, chronic illness, or disabilities. Having grown up with spotty health insurance and a parent with a preexisting health condition, I was somewhat aware of these privileges and the ways the medical system can work. I remember making a conscious choice to wear my Yale sweatshirt to the emergency room in the hope it would signal some kind of power or wealth. In reality, I was a freelance journalist, dog-walker, and fitness instructor without employer-based health insurance or a wealthy or powerful family to intervene on my behalf. Still, I was better off than so many.

My time in the hospital was short, and I wont dwell on it here, both because my story has been told many times and because hospitalization in the acute phase is not an experience all Long COVID patients share. Many others in this situation, like Sabrina, were unable to be hospitalized becausedespite debilitating symptomsthey did not exhibit shortness of breath. Some did have shortness of breath but were ignored or dismissed due to medical racism, sexism, other biases, or an overwhelmed emergency response system. Other COVID long-haulers were not hospitalized in their acute phase, because their initial cases were mild, moderate, or even asymptomatic.