Six years have passed since COVID-19 first emerged, yet for many Vermonters, the battle with Long Covid is far from over. This debilitating, chronic illness continues to cast a long shadow, trapping individuals in a cycle of persistent symptoms, financial strain, and a healthcare system that many patients, advocates, and clinicians argue is failing them. From the lack of clear diagnoses and effective treatments to widespread misunderstanding and political setbacks, the journey for Vermonters with Long Covid is marked by profound challenges, underscoring a critical need for greater support and recognition.
The Unseen Burden: Life with Long Covid in Vermont
For many, Long Covid isn’t just an illness; it’s a complete reshaping of life. Take Ali, a formerly active Vermont nurse, who experienced crushing shortness of breath and exhaustion after a mild COVID case in 2024. Despite multiple emergency room visits and extensive tests – CT scans, echocardiograms, blood work – doctors found nothing amiss. “Why do I feel this horrible all the time?” she wondered, a common sentiment among those whose severe symptoms elude conventional diagnosis. It took months, and eventually a neurologist, to connect her life-altering fatigue, chest pain, and other issues to Long Covid.
Mary Kate Shanahan, a birth doula in Winooski, echoes these sentiments. She candidly shares her embarrassment and fear of judgment when she first needed a wheelchair at the airport. Symptoms like falling asleep while driving forced her off the road for a long time, highlighting a level of incapacitation “normal people don’t experience.” These personal accounts underscore the isolating reality of an illness that defies easy explanation and often leads to profound physical deconditioning, as expert Dr. Lisa Sanders notes, where even minor exertion can exacerbate symptoms.
A Diagnostic Labyrinth: The Elusive Nature of Long Covid
The complexity of Long Covid, also known as Post-COVID-19 Condition (PCC), is immense. While official bodies like the CDC and WHO recognize it, understanding its mechanisms remains elusive. Researchers grapple with whether it’s an autoimmune condition, a result of organ damage, or a “domino effect” of dysregulated internal systems. A 2025 patient survey identified over 40 distinct symptoms, from chronic fatigue and respiratory issues to brain fog, migraines, and nerve pain. Recent studies classify it into eight illness trajectories, reflecting its varied presentation – mild to severe, improving to worsening, persistent to intermittent. This wide variability makes both diagnosis and treatment incredibly challenging.
Even six years on, no clear-cut diagnostic tests exist, nor are there universally successful treatments. This uncertainty leaves patients like Ali feeling lost, questioning their own bodies when tests come back “normal” despite debilitating symptoms. The Karolinska Institutet’s research, spanning up to 2.5 years post-infection, confirmed that non-hospitalized adults with PCC frequently suffer persistent physical and mental health impairments, including severe dyspnea and moderate to severe depression, underscoring a slow, incremental, and often incomplete recovery process.
Systemic Failures: Navigating Vermont’s Healthcare Landscape
The struggle with Long Covid is compounded by significant systemic barriers within the healthcare system. Financial burdens are immense. Ali faced the potential loss of insurance coverage for a crucial medication, an $80,000 annual out-of-pocket cost that would prevent her from working full-time and paradoxically increase her insurance premiums. These rising healthcare costs and reduced benefits, including uncertain health insurance subsidies for low-income Americans and doubled marketplace premiums, hit Long Covid patients particularly hard.
Gretchen Kitsos, a social worker leading a support group, points to the “disconnected and siloed nature of medical specialties” as a major hurdle. Providers often view Long Covid through the narrow lens of their own expertise rather than as a multi-systemic illness. Zoe Newmarco from Royalton experienced this firsthand, struggling to find a primary care provider or access Long Covid clinics in Vermont. Eventually, they relocated six hours away to New York simply “to have access to health care.” While the University of Vermont’s COVID Recovery Program is attempting to connect patients with multiple specialists, the broader system, plagued by staffing shortages, continues to fall short.
Beyond the Clinical: Stigma, Misinformation, and Personal Battles
Beyond the medical and financial struggles, Vermonters with Long Covid often contend with a pervasive lack of understanding and disheartening stigma. Krista Coombs, who leads a Long Covid support group, notes the common experience of being “torn down for just being sick” and facing misinformation – from claims that the disease is caused by the Covid vaccine to outright denial of its existence. Ali recalls her parents initially struggling to grasp the debilitating nature of her fatigue, highlighting how disbelief can extend even to close personal relationships.
This environment of skepticism can lead to patients doubting their own experiences. Mary Kate Shanahan’s embarrassment over needing a wheelchair exemplifies how the pressure to appear “normal” can override genuine needs. Such negative messages, coupled with cognitive difficulties like brain fog, make the already arduous task of self-advocacy and navigating complex systems even more challenging.
Advocacy and Political Roadblocks: A Fight for Recognition
Efforts to secure broader recognition and support for Long Covid patients have faced significant political setbacks. U.S. Sen. Bernie Sanders’ 2024 “moonshot” bill, proposing $1 billion for Long Covid research, languished in Congress. Even more disheartening for advocates was the action taken by Robert F. Kennedy Jr., who, after promising to fund Long Covid research during his 2025 Senate confirmation, abolished the Office of Long Covid Research and Practice and terminated an advisory committee shortly after assuming his role as Secretary of Health and Human Services.
Krista Coombs expressed deep frustration, calling the legislative effort “a joke now” given the immense work invested. She also noted the lack of acknowledgement from Vermont public officials for Long Covid Awareness Day in 2025. David Kaminsky, a lead at UVM’s program, stresses that losing research means losing the opportunity to learn what works and what doesn’t, a sentiment echoed by the WHO’s concerns over global funding shifts away from health preparedness. This ebbing momentum, as Gretchen Kitsos observes, creates a dangerous complacency, as if the world is ready to “move on” without acknowledging that “that sucker is still with us.”
Building Resilience: Strategies for Living with Long Covid
Despite the formidable obstacles, Vermonters living with Long Covid are demonstrating remarkable resilience, self-education, and advocacy. Many are experimenting with various medications, diets, exercises, and therapies to find what works for them. A critical strategy for managing symptoms is “pacing” – carefully managing energy expenditure to prevent debilitating crashes. Mary Kate Shanahan learned to document her physical and mental energy output, understanding how overdoing it one day could trigger fatigue days later, allowing her to slow down and prevent symptom exacerbation. This aligns with expert advice to “partner with your body” by integrating very low levels of activity to avoid deconditioning.
Support groups, like those led by Krista Coombs and Gretchen Kitsos, offer vital spaces for patients to vent, share tips, and find coping mechanisms. Ali, the nurse, found newfound empathy, stating, “You don’t really understand how difficult it is to live with a disability until you’ve experienced it yourself.” Zoe Newmarco, despite missing their pre-Long Covid body, has embraced new tools for self-advocacy and built a supportive community, stating, “it has totally changed my world. And I really love my life right now.” These stories of personal growth and adaptation highlight the strength found amidst adversity.
The Future of Long Covid: Research and Hope
The path forward for Long Covid patients in Vermont and beyond hinges on sustained research and collective action. While slow, progress in understanding and managing the condition is happening. The CDC continues to recommend updated COVID-19 vaccines (such as the 2025-2026 Moderna, Pfizer-BioNTech, and Novavax options) for all individuals aged 6 months and older, noting that vaccination is a safer way to build immunity and potentially lowers the risk of developing Long Covid.
Continued investment in research, transparent information, and integrated care models are essential. Vermont’s local efforts, combined with broader national and international initiatives like the WHO’s pandemic preparedness agreements, underscore the critical need for vigilance. As Krista Coombs points out, recovery may be unsteady and slow, but it is possible. The challenge now is to ensure that the healthcare system, policymakers, and communities at large don’t forget the persistent struggles of Vermonters living with Long Covid and provide the comprehensive support they desperately need.
Frequently Asked Questions
What is Long Covid, and why is it so difficult to diagnose and treat in Vermont?
Long Covid, or Post-COVID-19 Condition, is a debilitating illness characterized by persistent symptoms like chronic fatigue, brain fog, respiratory issues, and many others, often lasting for months or years after an initial COVID-19 infection. It’s challenging to diagnose because there are no clear-cut tests, and symptoms vary widely (over 40 identified). The underlying mechanisms are still being researched, with theories ranging from autoimmune responses to organ damage. In Vermont, patients face additional hurdles due to fragmented healthcare, siloed medical specialties, and difficulty accessing specialized Long Covid clinics or primary care.
Where can Vermonters find support and resources for living with Long Covid?
Vermonters struggling with Long Covid can find support through various channels. Organizations like the Vermont Center for Independent Living host support groups, such as the one led by Krista Coombs, where patients can share experiences and coping strategies. Other local support groups exist, often led by social workers like Gretchen Kitsos. While access to specialized clinics can be difficult, the University of Vermont’s COVID Recovery Program aims to connect patients with multiple specialists. Self-advocacy and seeking out communities, even online forums, are also key strategies many Vermonters employ.
What are the financial challenges and implications of Long Covid for patients in Vermont?
Long Covid poses significant financial burdens for Vermonters. Patients face rising healthcare costs, including potentially steep out-of-pocket expenses for medications if insurance coverage changes or is denied. Reduced health insurance subsidies and increased annual premiums on the marketplace exacerbate these issues. Many with Long Covid struggle to work full-time due to debilitating symptoms like chronic fatigue and brain fog, which can lead to income loss, further increasing financial strain and making it harder to afford essential treatments and living expenses. Navigating disability benefits like FMLA can also be a complex and prolonged process.
