Long Covid: Five Years Later

As the world emerged from the initial shock of the Covid-19 pandemic, many people assumed that recovery from the virus was straightforward: either individuals recovered quickly, or they succumbed to the disease. However, a significant subset of those infected experienced a vastly different reality — they became part of the Long Covid community, a condition that continues to plague millions of Americans.

The Ongoing Impact of Long Covid

For many, like one New Yorker who contracted the virus in the spring of 2020, the consequences have been extensive and debilitating. This individual describes waking up each day in a body that feels foreign, dealing with lasting symptoms such as:

• Tinnitus and constant sinus pressure
• Neuropathy, causing tingling and numbness in the extremities
• Chronic fatigue and shortness of breath
• Joint pain and recurrent migraines

While some symptoms have shown improvement with treatment, others persist, reshaping every aspect of daily life. This individual’s experience mirrors that of countless others grappling with the realities of Long Covid.

Public Perception and Medical Challenges

The visibility of Long Covid has diminished significantly as the pandemic has receded in the public consciousness. Despite advancements in medical understanding and symptom management, the lack of definitive testing or treatment options remains a pressing concern.

Early in the pandemic, the narrative largely dismissed the potential for long-term complications, cementing the idea that recovery was quick or fatal. As a result, many who experienced prolonged symptoms faced skepticism and dismissal from medical professionals. They were often met with statements such as:

• “Your symptoms are likely psychosomatic.”
• “You should try exercising.”
• “You’re not the only one feeling fatigued.”

This level of invalidation has compounded the struggles of individuals suffering from Long Covid, who often feel isolated and unheard.

Public Health Response and Research Initiatives

While institutions like the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO) now recognize the existence of Long Covid, their messaging often downplays its implications. The CDC notes that ongoing symptoms may last “weeks, months, or even years,” while the WHO claims that symptoms “typically” improve within six to nine months. However, research suggests a starkly different reality, with studies indicating that a significant percentage of individuals continue to struggle for years post-infection.

For example, a study published in The Lancet highlights that fewer than 2% of individuals experiencing Long Covid fully recover within a year. The condition has also been linked to an increased risk of severe health issues, including heart disease, stroke, and even elevated suicide risk — statistics that are often overlooked in broader discussions.

The Future of Long Covid Research

Initial hopes for substantial research into Long Covid began in December 2020, when Congress allocated $1.15 billion to the National Institutes of Health (NIH) to study the long-term effects of the virus. However, the NIH RECOVER Initiative has faced criticism for its approach, which some say has prioritized less relevant studies over urgent, groundbreaking treatment research.

Even more disappointing has been the handling of Long Covid research by government leadership. In a recent Senate confirmation, Robert F. Kennedy Jr., the Secretary of Health and Human Services (HHS), pledged to prioritize Long Covid initiatives. Shortly after, however, the administration disbanded an advisory committee focused on this critical issue.

A Collective Grieving Process

Individuals experiencing Long Covid often grapple with the loss of their former selves. This includes mourning lost health, disrupted careers, social isolation, and strained relationships. Each person’s experience is unique, yet they share the weight of a chronic condition that constantly reminds them of the broader pandemic that society is keen to forget.

As we mark the evolving landscape of the post-Covid world, attention to the realities of Long Covid remains paramount. Acknowledging and addressing this condition is essential for supporting the millions still navigating its challenges.