With Rhode Island’s healthcare system strained to the breaking point, long COVID patients grapple with complex, mysterious, and disabling symptoms — and find meaning supporting each other and working for disability justice.
In early 2020, Ariana, now 32, of North Providence got sicker than she had ever been in her life.
“We were kind of hearing whispers about COVID then, but thinking it wasn’t here yet — when it almost certainly was,” she recalled.
Her acute illness cleared up in a couple of weeks, but her troubles were just beginning.
Ariana, a therapist, had just opened her private practice when lockdown hit. As she saw clients via Zoom from her home office, she began to experience what she interpreted, at first, as a mental health crisis.
“Suddenly I was having panic attacks multiple times a day,” she said.
Her doctor suggested that she was reacting to the heightened stress of the pandemic. But then, Ariana began experiencing intense pain in her neck, upper back, and tailbone, along with dizziness and difficulty thinking clearly — symptoms that came on when she stood, and subsided when she laid down.
She would later learn that this phenomenon is called orthostatic intolerance, a disorder of the autonomic nervous system that develops in a significant number of long COVID patients.
“It wasn’t until I started experiencing physical pain that I started thinking, ‘Oh, this is bigger than I thought,’” she said.
A historical perspective
Post-viral illnesses — lingering or chronic conditions triggered by a viral infection — are not new. Scientists have documented and studied post-Ebola, post-West Nile virus, and Post-Epstein Barr (mononucleosis) syndromes, as well as post-viral syndromes connected to SARS, a close relative of COVID-19.
“If COVID didn’t cause chronic symptoms to occur in some people,” microbiologist Amy Proal of the PolyBio Research Foundation in Medford, MA told Vox in a 2021 feature, “it would be the only virus that didn’t do that.”
Waves of post-viral illness have followed pandemics in the past. According to Time Magazine, “long flu” emerged in the wake of the 1918 flu pandemic, with patients reporting symptoms ranging from “loss of muscular energy” to “nervous complications.” One 1918 “long flu” patient said:
“We were leaden-footed for weeks, to the point where each step meant a determined effort. It also was very difficult to remember any simple thing, even for five minutes.”
What is long COVID?
The term “long COVID” was coined at the start of the pandemic by patients who continued to experience symptoms after their acute COVID infections had cleared. Today, long COVID usually refers to disease that persists for more than three months post infection.
“Long COVID is really just a shorthand to describe a range of diseases and conditions that can get triggered by COVID,” explained Winnie, 39, of Providence, a clinical trials manager at a medical device company, who developed long COVID in 2023. “Sometimes it’s an acute COVID infection that just won’t go away. But now we’re seeing that it can be hundreds of different symptoms and conditions.”
Long COVID can include neurological, cardiac, gastrointestinal, immunological, and psychiatric symptoms, as well as problems with cognition, memory and chronic fatigue. In 2024, scientists found that long COVID was affecting up to 400 million people across the globe. And a recent study found that long COVID has surpassed asthma to become the leading chronic health condition among children. In addition, research suggests that risk of developing long COVID may increase with multiple COVID infections.
Long COVID can improve over time. But for most people — like Ariana — symptoms remain chronic and persistent.
Alex’s story
Alex, 30, of Providence, a filmmaker and video producer, tested positive for COVID in May of 2022. Their long COVID symptoms started about two weeks after their acute illness ended, when their shortness of breath suddenly returned during a Zoom work meeting.
“It felt like there was an elephant sitting on my chest,” they said. “I was like, ‘Do I have COVID again?’ But I kept testing negative. Finally, I came to the conclusion that it was probably long COVID.”
Their fatigue, palpitations, and shortness of breath persisted for months — and then, after a bout with the flu, their symptoms escalated. They began to experience chest pains so severe that at one point, their parents called an ambulance.
Alex, who had no preexisting conditions, sought help — first from their primary care doctor, and then from specialists in Rhode Island and Boston. But, as is the case for many long COVID patients, their doctors either didn’t know how to help them, or attributed their symptoms to mental health issues.
“I think because the tests I had came back normal a lot of the specialists chalked it up to anxiety. Either that or they said, ‘We don’t have the knowledge to do anything.’ The medical field is all about diagnostics and certainty, and if you fall outside that, it makes people uncomfortable.”
Alex’s symptoms began to improve on their own after about two years.
“I’m still not at my ‘factory settings,’ but I’m not getting heart palpitations anymore and I’m not getting chest pains,” they said. “I still get some breathlessness and I get really phlegmy at night. I’m very thankful that I can function a lot better in my day to day life.”
Winnie’s story
Winnie, 39, who manages clinical trials for a medical device company, avoided getting COVID until their boyfriend brought the virus home from work in 2023.
Winnie had a preexisting condition — type one diabetes. Still, their acute COVID infection was mild, lasting only about four days. It wasn’t until a month later that mysterious symptoms began to develop.
First, their blood sugar became dysregulated. Then came crushing fatigue.
“I could do maybe one errand a day. I stopped socializing because even just texting became exhausting.”
Their most disabling symptom was cognitive dysfunction — what is sometimes called “brain fog” in patient communities.
“A couple of different times I couldn’t remember my name or where I was. Even on my best days I felt like I was drunk. I was so limited and I was struggling at work. I couldn’t hold conversations. I felt like I had dementia.”
Like Alex, Winnie found little relief within the healthcare system; however, their symptoms have also improved on their own, with time.
“It was 10 months of fatigue so bad I couldn’t even text regularly with people — and then it slowly started to get better.”
Winnie attributes their recovery to a lifestyle that permitted them to rest.
“I’m so lucky that I was able to rest. I work from home, I don’t have kids. That’s where my experience has been so outside of the norm for so many people — I’m in a position to be able to take care of myself. I can’t imagine if I had kids depending on me or worked a service or retail job.”
Patients teaching patients: filling the gaps with peer-to-peer knowledge sharing
Dr. Ashley Lakin, a primary care provider in East Providence, said that her long COVID patients are largely not getting their healthcare needs met — and when they are, it is often through connections with other patients.
“A lot of the [long COVID treatment] centers set up in the earlier days seem to have closed, so these folks are doing a lot of their own research and connecting on social media to find providers,” she said.
Winnie credits their recovery to learning how to manage their post-viral fatigue with pacing and radical rest — not from their doctors, but from other patients.
“I had kind of learned that rest is the treatment for chronic fatigue on Twitter — that long COVID fatigue is a unique experience, and when it comes to [post-viral fatigue], the only way to feel better the next day is to rest today, and to just keep resting even when it’s difficult,” they said.
Ariana also learned about post-viral fatigue and radical rest from other patients. In addition, she learned from other patients that she could calm her panic attacks with over-the-counter antihistamines — a treatment many patients depend on to address immune system dysfunction triggered by COVID-19.
“All of the interventions [that] I have tried that have helped me in any way I learned about from other patients,” Ariana said.
When medical providers are new to long COVID, patients themselves can sometimes offer their doctors resources, such as The Bateman Horne Center’s Clinical Care Guide for medical professionals, for guidance in creating a care plan.
Nikki’s story
Nikki Boucher already carried a diagnosis of Lyme disease when she caught COVID in Mass General’s emergency room after falling down a flight of stairs in February of 2020.
She ultimately connected with the Boston-based specialists who currently treat her long COVID through other patients who were experiencing similar symptoms.
“It was kind of a coincidence. There were people who I happened to know who also happened to have dysautonomia” — a condition also associated with long COVID — “and also happened to live in the Boston area.”
Despite having access to specialist care — which is out of reach for many long COVID patients due to long wait times, a shortage of specialists, and insurance restrictions — long COVID has landed Nikki in emergency rooms more times than she can count. And, like Alex, Ariana, and Winnie, Nikki has had trouble getting doctors to take her symptoms seriously.
“I’ve been gaslighted a lot. Even once I got a formal diagnosis. Emergency room care didn’t believe me. Even when I would come in with my paperwork from Boston docs.”
Sometimes Nikki would be told that her symptoms were psychological. Other times, her lightheadedness and fainting — symptoms of severe orthostatic intolerance — were dangerously misinterpreted.
“Miriam [Hospital] thought it was a drug overdose,” Nikki recalled.
But her worst experience occurred when she fainted at the emergency room at Kent Hospital in Warwick.
“This nurse actually told me to ‘Stop faking it.’ And I couldn’t stop because I was actually passing out. She said, ‘If you aren’t going to act appropriately you can sit in the waiting room,’ and sent me back to the waiting room as punishment.”
Barriers to care: lack of education and a healthcare system in crisis
One barrier long COVID patients face is that medical providers are usually not trained to evaluate and treat complex disorders like long COVID, which may cause subjective symptoms like dizziness and fainting, memory problems, fatigue or pain, and often doesn’t show up on tests.
Additionally, the pandemic stressed an already broken medical system in Rhode Island and nationwide.
M., a former administrator at a local hospital, acknowledged that burnout among medical workers is a national issue, but is especially acute in Rhode Island.
“COVID really did a job on healthcare providers all over the country. A lot of clinicians in Rhode Island retired or stopped working or cut back.”
This means that there are fewer providers in general, and the doctors and nurses who are still working in Rhode Island are stretched thin, and have less time to spend with complex patients.
Moreover, reimbursements to healthcare providers and hospital systems in Rhode Island are lower than they are in surrounding states, making it difficult for Rhode Island to recruit and keep healthcare providers. Emergency rooms especially are struggling.
“ERs are overwhelmed,” M. said. “A number of hospitals have closed down. And there are more and more people who don’t have healthcare who end up in ERs because they don’t have primary care and can’t pay.”
Living well with long COVID
Today, Nikki has relocated from Rhode Island to Washington, DC to work as an activist, where she uses a reclining wheelchair and medication to manage her orthostatic intolerance. Despite the fact that she sometimes faints in public, she lobbies Congress and attends protests in her wheelchair. She even attended Taylor Swift’s Eras tour last year.
“I give myself permission to live imperfectly and devote more of my time and still-limited energy to finding joy — and less of it to chasing after doctors for an answer or solution that we both know don’t yet exist,” she said.
Long COVID cut short Ariana’s career as a therapist, but she has begun exploring work as a “disability doula,” helping patients newly diagnosed with chronic illness find meaning and empowerment by claiming disability as a political identity. Through the lens of disability justice — an intersectional framework developed by Sins Invalid, a “movement-building and performance project that celebrates disabled people, centering and led by disabled Black, Indigenous, and people of the global majority, and queer, trans, and nonbinary disabled people,” which links disabled people’s struggle for recognition and rights to that of all oppressed people — she hopes to shift attitudes toward disability and help disabled people find solidarity, advocate for themselves, and live more fulfilled lives.
“I’m interested in helping newly disabled people become politically ‘disabled’ — to see the ways in which they are oppressed, but also to find power in that,” she said.
To Ariana, disability justice — which prioritizes access and wellbeing for the most vulnerable among us — has the potential to transform society for the better.
“When we really prioritize making the world accessible for sick and disabled people, we’re also prioritizing access for parents, for elders, and for people who are experiencing acute injury or illness,” she said.
Winnie and Alex are passionate about protecting their communities from COVID-19, and work with the Rhode Island Mask Bloc, a mutual aid group that distributes free masks and tests to community members. Winnie also coordinates a mutual aid group that distributes food, clean needles and socks in Kennedy Plaza — while wearing n95 masks to protect the people they’re serving.
Although Alex’s symptoms have improved, long COVID’s lessons about disability, access, and protecting vulnerable populations continue to provide a moral north star.
“Long COVID has helped me understand the necessity of disability justice,” they said. “It’s helped me realize that we’re all going to become disabled at some point — assuming we live long enough — which is a framework that I had never internalized before it happened to me.”
Rachel Swift is Rhode Island-born writer whose work explores the disruptive, devastating, and liberatory impact of chronic illness and disability on individuals and the collective. She holds a bachelor’s degree in gender studies and most of an MFA in fiction writing. You can follow her work on Substack.
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