Sarah Luft, The City
Republished with Permission: The Roosevelt Island Daily News
This story is part of MISSING THEM, THE CITY’s COVID-19 memorial and journalism project. MISSING THEM wants to understand the pandemic’s collective impact on New Yorkers. Did you experience long-term health problems after getting sick with COVID? Share your experience with us here.
Jenna Bitar, 30, caught COVID in March 2020, just as schools were shutting down. What started as a bad cold “got scary very fast,” said Bitar.
Within a few weeks, they were experiencing a sore throat, debilitating fatigue and a racing heart rate when sitting or standing. “I would try to water my plants or fold my laundry and have to lay down with a fever,” said Bitar.
Bitar’s symptoms stretched on. “I’ve had to grieve the loss of my brain function, memory, cognition while also losing my relationships, any semblance of independence,” said Bitar, who was formerly a nonprofit communications manager and paralegal, and uses “they” pronouns. They often rely on supportive friends and family for basic care. “This list of losses I’ve experienced from long COVID is too long to number.”
Bitar is one of thousands of New Yorkers living with long COVID. Between 20 to 30% of New Yorkers who’d had COVID-19 reported long-lasting health problems, according to a survey by the Department of Health and Mental Hygiene, or DOHMH.
Residents of The Bronx, as well as women and Latinos across the city, reported long COVID symptoms at disproportionately high rates last year, compared to adults of other genders, races, and boroughs. These disparities may stem, in part, from longstanding health inequities that influence things like pre-existing conditions and access to care.
Long COVID refers to health problems that follow a COVID-19 infection, including shortness of breath, chest tightness, fatigue, blood clots, joint pain, brain fog, depression and more. People of all ages can experience long COVID, including children. Symptoms and severity can vary widely. These symptoms need to be present for at least four weeks after infection to be identified as long COVID, according to the U.S. Centers for Disease Control and Prevention.
THE CITY’s MISSING THEM project asked New Yorkers with long COVID — as well as their loved ones, caregivers and clinicians — to share questions, coping strategies and advice for fellow New Yorkers. From there, we spoke with scientists and doctors specializing in long COVID care and heard from dozens of New Yorkers living with it. We’ve gathered their advice to break down how to find help for long COVID in the five boroughs, including medical, social and financial support.
If you have resources, questions or coping strategies you want to share with fellow New Yorkers, or ideas about how to improve this guide, you can share recommendations here.
1. Get Medical Care
Finding medical care for long COVID can be notoriously difficult. Some patients have had their concerns dismissed or faced delays in diagnosis and treatment. But medical care can be lifesaving.
“If you find one doctor who is kind, knowledgeable, and curious, you will find that your options for healthcare open up,” said Brooklynite Rachel Robles, who’s been living with long COVID since an infection in March 2020.
THE CITY spoke with patients and clinicians to get advice on where to start.
Know Where to Look
There’s no single correct way to get medical care for long COVID, experts said. That is in part because long COVID is not one thing. “COVID is a multi-system disease,” said Dr. Jonathan Whiteson, head of NYU Langone’s Post-COVID Care Program.
Some people may be dealing with cardiovascular concerns, while others are experiencing fatigue and brain fog; still others are dealing with both, or entirely different symptoms.
See a Primary Care Physician
Dr. Lawrence Purpura, who runs a long COVID clinic at Columbia University Irving Medical Center, recommends New Yorkers discuss symptoms with a primary care doctor — if they have one — “who already has a good understanding of their medical history.”
That’s because primary care doctors can act as your personal “quarterback or point person,” said Dr. Seth Congdon, who leads Montefiore’s COVID-19 Recovery (CORE) Clinic. They can help rule out other possible causes of your symptoms. After screening, they may refer you to specialists or to a long COVID clinic.
The clinicians THE CITY spoke to pointed out that SARS-CoV-2 is a relatively new virus. And while infection-associated or post-viral conditions similar to long COVID have been around for decades, most doctors are not trained in how to identify and treat them.
“If you have a primary care doctor that is kind of dismissive, or doesn’t seem to be taking it seriously, try to find a different one,” said Congdon.
NYC Health and Hospitals has a Primary Care Hotline for New Yorkers to book an appointment at 844-NYC-4NYC or 844-692-4692. Columbia University Irving Medical Center also offers primary care for people with long COVID.
“Be an advocate for yourself. Speak up,“ recommended Ashley Andrews, a resident of The Bronx who sees pulmonologists and cardiologists at Mount Sinai’s Center for Post-COVID Care. “My advice to other New Yorkers, you know, is to stay very vocal, and just look for any type of support.”
If you don’t have an established primary care doctor, or one that’s supportive, “there’s a few ways to approach it,” said Purpura. You might start with a new primary care doctor or a long COVID clinic.
Find a Long COVID Clinic
At long COVID clinics, clinicians are focused on patients with long-lasting health effects of COVID-19. There are about two dozen programs currently operating in New York City as of early 2023, some public and some private. The majority of these clinics don’t require a referral, though your insurance plan may require it.
Because science on long COVID and standards of care are continually evolving, post-COVID clinics can be hubs of “localized and specialized knowledge,” said Dr. Thomas Gut, head of Northwell Health’s Post-COVID Recovery Center at Staten Island University Hospital.
“When we do an intake for our patients, we go through a list of potential symptoms, as well as functional limitations and possible medical issues,” said Whiteson. “We can then guide people to the right specialists.”
One challenge, for many, may be timing. “Unfortunately, for a lot of the clinics in the city, there is a several months waitlist,” said Purpura, as the demand for care is outpacing its availability.
Some long COVID clinics, like NYC Health and Hospitals’ three COVID-19 Centers of Excellence, can act as a “one-stop shop” for patients, said Dr. Theodore Long, the executive director of NYC COVID-19 Test and Treat Corps. The centers offer long COVID, primary and specialty care under one roof. As of early January 2023, there is no waitlist to be seen at the city’s three Centers, according to a Health and Hospitals spokesperson.
Some post-COVID programs specialize in a particular service like physical therapy, or a particular population like pediatrics. THE CITY asked long COVID clinics across the five boroughs about insurance options, age groups served, contact information and more. To explore post-COVID care programs in the city, explore and click through the map above.
Call the City’s Long COVID Hotline
NYC Health and Hospitals offers AfterCare Resource Center, a public web page and phone line that connects New Yorkers with long COVID to resource navigators.
“The premise of it is that we look at things holistically. And when you talk to one of our navigators, it’s not just ‘How do we get you into a clinic?’ It’s ‘What do you need?’ We start with listening,” said Long.
Since AfterCare began in April 2021, resource navigators have made more than 395,000 outbound calls and texts to New Yorkers with a prior COVID infection, Health and Hospitals said, prioritizing outreach to residents in zip codes hit hardest by COVID-19.
Health and Hospitals partners with three community-based organizations — BronxWorks, Research Foundation at CUNY, and the Chinese American Planning Council — to staff the AfterCare phone line. In addition to helping New Yorkers find medical care, navigators can discuss options for social, financial and mental health support.
Know What to Expect
Standards of care for long COVID are evolving. Still, there are a few things you should look for in a clinician, experts say.
Dr. David Putrino, the director of rehabilitation at Mount Sinai, noted three red flags to look out for. Beware when clinicians:
In all three cases, “it indicates that your physician is not being science-based in their approach to providing care,” said Putrino. “Anyone who is attempting to psychologize your symptoms, saying, ‘You’re depressed. You have trauma. You have anxiety,’ without digging into your symptoms, that is a big red flag.”
While mental health support can be helpful for people with any chronic condition, including long COVID, the danger here is when patients’ health concerns are minimized or dismissed. Almost three years into the pandemic, it’s now well-documented that COVID can cause long-lasting dysfunction across multiple body systems.
Likewise, “the framing of long COVID as, ‘You had a virus. You’re a little bit worn down. You just need to push through and exercise your way out of it,’ is highly damaging,” said Putrino.
Not all fatigue comes from deconditioning, and assuming so can be harmful. For some people, physical, mental and emotional exertion may cause worsening symptoms, or what’s known as post-exertional malaise (PEM). The recommended approach to PEM is not exercise, but activity management or pacing, according to the CDC.
When clinicians do the following, it’s usually a sign of supportive medical care. Expect your clinician to:
“If testing comes back normal, then what I expect to see from a good clinician is to come up with more tests to be looking for abnormal physiology,” said Putrino. “All of your standard labs coming back normal is the beginning of an investigation, not the end.”
“You can ask that person about specific tests you might want done, possible diagnoses you want to rule out, and research that you want to discuss,” said Robles.
Prepare for Your Appointment
Ahead of your appointment, there are a few things you can do to prepare.
Document Your Symptoms
Documenting symptoms is a common practice among people with chronic health conditions, and a key habit to manage your symptoms and communicate about them with your doctors.
Congdon recommended keeping a diary of symptoms, as well as notes on what seems to make them worse or better.
Compile Your Medical History
“Definitely bring a list of your medicines, vitamins, anything you’re taking on a regular basis to any of those doctor’s appointments,” said Congdon.
This guide from AfterCare might help. It includes a health history worksheet and a fill-in-the-blank script to start a conversation with a medical provider. The CDC also offers tips for people with long COVID. There’s a series of printable PDFs with tips for before, during and after your visit, plus a checklist that compiles these recommendations into an actionable list.
Learn About Long COVID
Learning about long COVID can help you understand what’s going on in your body and navigate your symptoms — both in day-to-day life and at the doctor’s office.
Self-management is “so foundational to all management of chronic disease,” said Dr. Amanda Johnson, director of AfterCare, adding that it’s something most patients are already doing. Making behavioral changes or taking medication are just two examples.
For some New Yorkers with long COVID, learning about associated conditions can be useful. If you’re experiencing debilitating fatigue and worsening of symptoms after exertion, or dizziness and racing heart rate when sitting or standing, here are two conditions to know about:
Learning about long COVID may also prove useful at the doctor’s office. “The more that you can educate yourself on the condition and educate yourself on the common underlying causes of the symptoms you’re experiencing, the more you can work with your medical team,” said Putrino.
“I think that we have a lot of work to do as a provider community to educate ourselves about what is known about long COVID,” said Johnson.
Several doctors THE CITY spoke with noted resources that patients can share with clinicians as needed. These include guidance from DOHMH with information about how to screen for long COVID, the CDC’s overview on clinical care, and the World Health Organization’s Long COVID Rehabilitation Guidance.
2. Find Community Support
Chronic health challenges of all kinds can be isolating. This is especially true of long COVID. People with long COVID often face stigma from loved ones and their wider community.
“It’s very hard for most people to understand what life is like living with an unpredictable invisible illness. It’s very isolating,” said Bitar.
Bitar recommends finding community among people experiencing long COVID and other chronic illnesses. “Finding community with other sick and disabled people has been a lifeline for me in surviving long COVID,” said Bitar.
Bitar, in part, is referring to a group of six artists, healers and organizers with long COVID called BED Collective, of which they’re a part. “Last year, we organized a day-long performance and healing space for New Yorkers with Long COVID and other disabled community,” they added. The event was called Sick Concert.
“People are getting so much support at a lot of different levels from the larger community of people with long COVID and their loved ones,” said Johnson.
At this point, we might know more about certain symptoms than others, added Johnson, so it’s important that people have the opportunity to learn from each other.
There are hundreds of online community gathering spaces on social media platforms like Facebook and Twitter, as well as a host of organizations dedicated to long COVID advocacy and peer support. Here are just a few options to consider based on your specific needs and interests.
Long COVID Support Groups
New Yorkers THE CITY spoke with recommended the following patient-led organizations as valuable sources of information and community in their journeys with long COVID:
Related Support Groups
For people with long COVID who may also be living with ME/CFS or dysautonomia, clinicians and patients recommended the following support groups:
3. Look for Financial Help
A study in The Lancet found that 45% of people with long COVID needed to reduce their working hours, and an additional 22% were unable to work at all. Around 3.5 to 4.5 million Americans are currently out of work due to long COVID, according to a data analysis by the Brookings Institute.
With this in mind, here are a few financial support options to explore.
Health Care Support
If you’re unable to access or pay for health insurance, try NYC Care. It’s an insurance program that guarantees “low-cost and no-cost services to New Yorkers who do not qualify for or cannot afford health insurance” through Health and Hospitals.
Transportation costs can also be a barrier to care, as can navigating New York’s public transit systems with long COVID. “If you’re experiencing cognitive difficulty, if you are short of breath, like that’s really going to make it hard for you to get to your appointment,” said Johnson.
In response to these challenges, Health and Hospital’s AfterCare program launched a new transportation benefit in December. “Right now we are able to offer people round-trip rides to medical appointments related to long COVID,” she said.
The benefit is not limited to medical appointments with Health and Hospital providers; it can be used for any medical appointment related to long COVID care within 25 miles of the New York City area. To access the benefit, call the AfterCare hotline at 212-268-4319 and press 4 to speak with a resource navigator.
Disability Accommodations and Benefits
To learn about your rights to workplace accommodations, you can use Ask JAN, a free service offered by the Job Accommodations Network of the U.S. Department of Labor’s Office of Disability Employment Policy.
If you got COVID on the job, or long COVID causes you to miss work, you may be eligible for workers’ compensation. It can provide wage replacement benefits and free, lifetime medical care for your work-related illness. There are a few time-sensitive things to know:
If you do not suspect you caught COVID at work but are struggling with long COVID, you may be eligible for short-term disability benefits from an employer. New York State requires employers to provide disability benefits coverage for employees for off-the-job illness and injury. The benefit can provide partial wage replacement. You can learn more about short-term disability benefits and how to file a claim with the Workers’ Compensation Board here.
In cases where long COVID substantially limits one or more life activities — meeting the definition of a disability under the Americans with Disabilities Act (ADA) — people may be eligible for one or more federal disability benefits. Not all people with long COVID will qualify. New York’s Office of Temporary and Disability Assistance (OTDA) has a primer outlining eligibility requirements, including all of the following:
Social Security Disability Insurance (SSDI) is for adults who’ve worked before and are now unable to work due to a disability. Meanwhile, Supplemental Security Income (SSI) is a benefit for adults and children with a disability, and adults over 65 regardless of disability, who have limited income and resources. When a New Yorker applies for SSI, their application is automatically shared with OTDA for consideration for the State Supplemental Income Program (SSP), too.
Navigating benefit applications can be challenging. You can find tips from attorney Andrew Kantor on applying for short and long-term disability benefits with long COVID among the resources of Body Politic.
Medical and Family Leave
Unpaid, job-protected medical leave is another option. The Family Leave and Medical Act (FMLA) guarantees 12 work weeks of leave in a 12-month period for employees of covered employers for serious health conditions. The U.S. Department of Labor lays out eligibility requirements and a step-by-step application process in an employee guide. You can find frequently asked questions and answers about the federal policy here.
FMLA can also be used to care for a family member with a serious health condition like long COVID. New York state’s Paid Family Leave (PFL) can be used to care for a family member, too; as of January 1, 2023, the program now includes sibling care. You can learn more about how these two benefits interact via this comparison chart.
The city’s Human Resources Administration (HRA) also offers cash, food and emergency rental assistance. You can book a free one-on-one financial counseling session on the HRA website or call 718-557-1399 between 8 a.m. and 5 p.m. Monday through Friday.
New York State’s Office of Temporary Disability Assistance has also compiled a list of programs that can help New Yorkers with energy costs, rent, and water and food access.
You can also learn more about financial support options for New Yorkers with long COVID on the AfterCare website.
4. Advice from New Yorkers with Long COVID
When we asked for advice from New Yorkers with long COVID, a few common themes emerged.
Robles, the Brooklyn resident living with long COVID since March 2020, put it this way: “Long COVID is a marathon, not a sprint.”
This advice is especially relevant for those experiencing signs of ME/CFS or PEM.
“If you have fatigue, learn about spoon theory and pacing,” said another Brooklynite, who asked to remain anonymous.
Spoon theory is a metaphor and tool for visualizing energy limits. The concept was coined by Christine Miserandino, as she tried to describe her experience of living with lupus to a friend. When you have limited energy — as if measured in a number of spoons — how you approach your day changes. This is where pacing, a self-management strategy, comes in.
Pacing is a means of managing activity levels. If you’re experiencing post-exertional malaise or PEM, here are two resources that might be helpful:
Robles also recommends learning from people with lived experience of chronic illness. One place to start? Disability Visibility, a collection of first-person stories about living with a disability edited by disabled activist and writer Alice Wong.
“Learn from your elders who are fighting for change, and learn more about yourself as you come into your disability identity,” said Robles. “Follow people with chronic illnesses on social media.”
For example, you may try following #LongCOVID, #DisabilityTwitter and #NEISVoid hashtags on Twitter. The latter stands for “No End in Sight Void” and is a way for people with chronic illnesses to connect.
Others recommend The Long COVID Survival Guide, a book about navigating life with long COVID with chapters on medical care, disability benefits, relationships, pacing, dysautonomia, mental health and more. It’s edited by Body Politic founder Fiona Lowenstein. Each chapter is written by people living with and caring for people with long COVID. One chapter, for example, is co-authored by Robles, Putrino, and Dr. Dona Kim Murphey, and gives tips for getting medical diagnoses.
Try to Avoid Reinfection
While more research is needed on the impact of COVID reinfections on post-COVID conditions, it’s known that reinfection can increase the risk of long COVID.
To reduce the risk of reinfection, “People with long COVID can use layered protections,” said JD Davids, co-founder of The Network for Long COVID Justice, recommending high-quality masks, as well as air filtration and ventilation.
In the case of infection, the antiviral treatment Paxlovid can reduce the risk of long COVID, according to research by the U.S. Department of Veterans Affairs.
Process Your Emotions
Negative emotions are common with any sudden change in health — and they can be exacerbated when peoples’ experiences aren’t taken seriously by loved ones, community members or clinicians.
“I’ve learned a lot about ableism and the ways our society rejects and disposes of disabled people,” said Bitar. “I’ve started a deep mindfulness and meditation practice, which has carried my heart through living in a state of constant grief.”
For Andrews, the Bronxite seeing pulmonologists and cardiologists at Mount Sinai’s Center for Post-COVID Care, counseling has been a salve — not in remedying her long COVID symptoms or the dismissal she’s faced from colleagues, but in providing a safe space where her concerns can be heard and validated.
It’s all about “having someone listen to you, really, genuinely caring and listening to your story,” said Andrews.
Employed by the New York City Department of Education, Andrews has not been able to return to work in-person since developing long COVID after an infection last fall.
She regularly finds support from her loved ones, too. “My mom’s been my biggest support,” said Andrews. “And, you know, I do have a puppy. … When I’m not feeling well, he knows that. And then he’ll try to do something funny to make me smile or laugh,” said Andrews.
Like Andrews, Bitar has found relief in small joys. “Sometimes the highlight of my day is sipping a cup of tea, or petting my cat. I’ve learned that the only thing that’s certain is the present moment,” said Bitar.
For fellow New Yorkers with long COVID, they recommend finding “a routine that offers ease, comfort, pleasure even on the hardest days.”
Think “lighting a candle, watching a favorite TV show or audiobook, or just looking out the window at the clouds passing by,” said Bitar. “As isolating as this experience is, you’re never alone.”
We’ll continue to update this guide as knowledge about long COVID continues to evolve. If you have coping strategies, insights, advice or questions about long COVID, we want to hear from you.
MISSING THEM is supported in part by the Brown Institute for Media Innovation at Columbia Journalism School.
THE CITY is an independent, nonprofit news outlet dedicated to hard-hitting reporting that serves the people of New York.