When most people think of COVID-19 today, they often envision a short-lived illness, akin to a common cold, characterized by a few days of fever, sore throat, or cough before recovery. However, for many individuals, the story extends far beyond this brief encounter. Long COVID, as defined by the World Health Organization (WHO), involves symptoms persisting for at least three months after the initial infection and has emerged as a significant and enduring facet of the pandemic.
While much of the research to date has focused on cataloging symptoms such as fatigue, brain fog, and breathlessness, there is a notable gap in understanding how these symptoms affect daily life, particularly in Australia. A new study, published today, aims to fill this void, shedding light on the profound limitations that long COVID imposes on individuals’ daily lives, hindering their ability to perform both desired and necessary activities.
Understanding Long COVID
Long COVID affects approximately 6% of those who contract COVID-19, with over 200 symptoms documented. For some individuals, the condition lasts a few months, but for “long haulers,” it can stretch into years. The complexity of measuring the problem arises from the variability of symptoms from person to person, leading to ongoing debates about the nature, causes, and even the existence of long COVID.
However, mounting evidence underscores the reality and seriousness of long COVID. Studies confirm that it reduces quality of life to levels comparable to chronic fatigue syndrome, stroke, rheumatoid arthritis, and Parkinson’s disease.
Insights from the Australian Study
In the recent study, researchers surveyed 121 adults across Australia living with long COVID. These individuals contracted COVID-19 between February 2020 and June 2022, with most participants aged between 36 and 50. Despite the majority never being hospitalized and managing their illness at home, they continued to struggle with daily activities months or even years later.
To assess the impact, participants completed two widely recognized surveys in health research: the WHO Disability Assessment Schedule (WHODAS 2.0) and the Short Form Health Survey (SF-36). These tools capture individuals’ voices and lived experiences, providing insights that go beyond what medical tests can reveal.
People with long COVID reported worse disability than 98% of the general Australian population. A total of 86% met the threshold for serious disability compared to 9% of Australians overall.
On average, participants experienced difficulty with daily activities on about 27 days each month and were unable to function on approximately 18 days. While basic tasks such as eating or dressing were less affected, more complex activities like housework and socializing were significantly impacted. This limited their ability to contribute to their homes, workplaces, and communities.
Implications and Global Context
International research mirrors these findings. A study conducted across 13 countries identified similar levels of disability, noting that women often reported higher disability scores than men. The multifaceted nature of long COVID disability, which can fluctuate over time, challenges traditional healthcare models designed for chronic conditions.
Another critical insight from the study is the value of self-reported outcomes. Long COVID lacks a definitive diagnostic test, and patients frequently report skepticism from healthcare professionals regarding their symptoms and their impact. Yet, the study demonstrated that individuals’ self-assessments of recovery strongly predicted their disability and quality of life.
This highlights that self-reports are not merely “stories” but valid and reliable health indicators, capturing nuances that medical tests cannot.
For instance, fatigue extends beyond mere tiredness, affecting concentration, hobbies, and social connections. The study illustrates how long COVID disrupts futures, fractures connections, and creates daily struggles that ripple out to families, workplaces, and communities.
Next Steps and Recommendations
Evidence presented to the 2023 parliamentary long COVID inquiry estimates that hundreds of thousands of Australians are living with long COVID. Disadvantaged communities are particularly vulnerable to its cascading effects, and ignoring the scale and severity of long COVID risks exacerbating inequality and deepening its impact.
To address these challenges, services must be developed based on lived experiences, aiming to restore not only health but also dignity and participation in daily life for those affected by long COVID. Rehabilitation and support services must extend beyond basic medical care, offering strategies to manage fatigue, such as “pacing” and energy conservation. Workplaces should accommodate individuals with long COVID by adjusting hours, redesigning job demands, and providing flexible leave options. Additionally, support is needed to rebuild social connections.
All of this requires thoughtful assessment and treatment of individuals with long COVID. Listening to patients and valuing their experiences is a crucial first step towards meaningful recovery.
We acknowledge the contributions of the co-authors of the research: Tanita Botha, Fisaha Tesfay, Sara Holton, Cathy Said, Martin Hensher, Mary Rose Angeles, Catherine Bennett, Bodil Rasmussen, and Kelli Nicola-Richmond.
Courtesy of The Conversation. This material from the originating organization/author(s) might be of the point-in-time nature, and edited for clarity, style, and length. Mirage.News does not take institutional positions or sides, and all views, positions, and conclusions expressed herein are solely those of the author(s).
