As we approach the five-year mark since the onset of the COVID-19 pandemic, a growing community of individuals suffering from long COVID reflects on their ongoing battle with this debilitating condition. While some first-wavers worldwide have marked this milestone, many others—particularly those suffering from related chronic illnesses such as myalgic encephalomyelitis (ME)—have endured similar struggles for decades.

My personal experience began with a seemingly mild case of COVID-19 in February 2020 when I was just 27 and regarded myself as "healthy." The absence of respiratory symptoms initially masked the profound effects of the virus, as I grappled silently with a mysterious loss of taste and smell, along with painful clots. Over time, a cascade of debilitating symptoms arose, forever altering my life and pushing me into the realm of disability. Following two reinfections, my health has continued to decline.

The early days of the pandemic presented a terrifying landscape for long COVID patients as medical professionals often dismissed our symptoms, attributing them to anxiety or depression when tests appeared "normal." In response, we formed communities, sharing our stories on social media and challenging the narrative propagated by health officials that COVID infection's aftermath was brief. Here we are, five years later, still fighting for recognition and treatment.

Reflecting on this half-decade, we can identify significant milestones in our struggle for awareness, research, and advocacy related to long COVID. Tragically, we must also confront the heavy losses endured during this period, which include over 25 million excess deaths globally due to COVID-19, and a staggering 400 million people currently suffering long-term effects, some of which can be fatal.

The pandemic has not only affected health but has created an unsafe environment for those with disabilities and weakened immune systems. Many endure profound grief related to lost friendships, relationships, and overall safety in a society that continues to ignore the ongoing effects of the virus.

Despite the extensive research demonstrating that COVID-19 can damage nearly every organ system and the risk associated with reinfection, some government entities and health officials continue to minimize the issue. This demonstrates a troubling trend of ableism exacerbated by late-stage capitalism, reminiscent of times when societal needs were overlooked in favor of economic gain.

Yet through this adversity, there is hope. The resilience of long COVID patients—those who bravely advocate for their right to be heard—has been nothing short of inspiring. Without their advocacy, our current understanding of long COVID would be drastically different. Dedicated individuals filled out countless surveys, leading to the documentation of over 200 symptoms associated with long COVID. They participated in research initiatives, provided blood samples, and supported the establishment of clinical trials that could change lives.

The term "long COVID" itself was coined by Italian researcher Elisa Perego in May 2020. She aptly titled the condition to reflect its prolonged nature, dispelling earlier misconceptions that COVID-19 symptoms were short-lived. This nomenclature has since evolved into a critical framework for advocacy, working to dismantle the prevalent denialism regarding the condition's severity.

Yet, despite growing acknowledgment, media narratives frequently suggest that long COVID lasts only for "weeks or months," perpetuating harmful misconceptions. Studies reveal that a significant number of long COVID sufferers have yet to find relief and may face lifelong challenges akin to chronic illnesses that arose from other pathogens.

Encouragingly, awareness-raising initiatives like Long COVID Awareness Day on March 15 and Pulitzer Prize-winning journalism by Ed Yong are pivotal in these efforts. However, with potential funding cuts looming in the U.S., experts like Gina Assaf from the Patient-Led Research Collaborative emphasize the necessity for global cooperation and patient collaboration to further scientific inquiry.

Moreover, various advocacy groups are raising vital funds to investigate persistent viral theories, while research organizations are collaborating to design clinical trials that could lead to effective treatments.

Despite notable progress, no approved treatments exist for long COVID, and associated conditions such as dysautonomia are often met with a lack of knowledgeable providers. Consequently, access to crucial support and treatment remains a significant hurdle for patients, especially among marginalized communities who have faced higher rates of infection and barriers to health care.

Tracey Thompson, founder of the Black Indigenous Racialized COVID Health project, emphasizes the necessity of ongoing prevention to mitigate the spread and impact of COVID-19—affixed to wearing masks and practicing safety protocols. As we enter a fifth year of living with the virus, advocates continue to push for systemic changes that prioritize public health over profit.

Across the globe, grassroots movements and mutual aid groups have emerged to help communities manage the ongoing crisis, often spearheaded by those with long COVID. These efforts illustrate an indomitable spirit that remains unyielding in the face of systematic neglect.

In my journey as a journalist navigating the complexities of long COVID, I have come to value the significance of service journalism—the act of informing and empowering communities about this complex disease. Committing to share stories of resilience and pinpointing the urgent need for safety nets and research is our collective responsibility as we brace for what lies ahead in the ongoing battle against long COVID.

As we continue to share these narratives, it is important to remember the courageous souls who are leading the charge amidst a society hesitant to address their plight. Together, we will strengthen our resolve, advocate for recognition, and push for the changes needed to ensure that everyone grappling with long COVID finds the care and support they need.