When most people think of COVID-19 today, they often picture a brief illness reminiscent of a common cold—characterized by a few days of fever, sore throat, or cough before recovery. However, for a significant number of individuals, the narrative doesn’t conclude there. Long COVID, defined by the World Health Organization (WHO) as symptoms persisting for at least three months post-infection, has emerged as a persistent element of the pandemic.
While much of the research has concentrated on cataloging symptoms such as fatigue, brain fog, and breathlessness, there remains a gap in understanding their impact on daily life, particularly in Australia. This is where a new study, published today, makes a crucial contribution. It highlights that long COVID is not merely uncomfortable or inconvenient; it can profoundly restrict daily activities, preventing individuals from engaging in both necessary and desired tasks.
Understanding Long COVID
Long COVID affects approximately 6% of those infected with COVID-19, with over 200 symptoms documented. For some, the condition lasts only a few months, but for “long haulers,” it can extend into years. The complexity of the problem is compounded by the variability of symptoms from person to person, sparking debates about the nature, causes, and even the legitimacy of long COVID.
Nevertheless, accumulating evidence affirms that long COVID is both real and serious. Studies indicate that it diminishes quality of life to levels comparable to chronic fatigue syndrome, stroke, rheumatoid arthritis, and Parkinson’s disease.
Insights from the Australian Study
In an effort to understand the impact of long COVID, researchers surveyed 121 adults across Australia who had contracted COVID-19 between February 2020 and June 2022. The majority, aged between 36 and 50, were never hospitalized and managed their illness at home. Yet, months or even years later, they continued to struggle with daily activities once taken for granted.
Participants completed two surveys commonly used in health research to assess disability and quality of life: the WHO Disability Assessment Schedule (WHODAS 2.0) and the Short Form Health Survey (SF-36). These tools capture individuals’ voices and lived experiences, offering insights into how symptoms affect everyday life 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 just 9% of Australians overall.
On average, individuals experienced difficulties 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. Although basic needs could often be met, the ability to contribute to homes, workplaces, and communities was severely limited.
Global Context and Implications
International research mirrors these findings. A study spanning 13 countries revealed similar levels of disability and noted that women had higher disability scores than men. The multifaceted nature of long COVID disability, which can fluctuate over time, challenges traditional healthcare models for chronic conditions.
Another key insight from the study is the importance of self-reported outcomes. With no diagnostic test for long COVID, individuals often encounter skepticism from health professionals regarding their symptoms and their impact. However, the study demonstrated that self-reported recovery ratings strongly predicted disability and quality of life.
This underscores that self-reports are not merely anecdotal; they are valid and reliable health indicators, capturing what medical tests cannot.
For instance, fatigue is not simply feeling tired. It can lead to losing concentration while driving, abandoning hobbies, or withdrawing from valued friendships. The study reveals that long COVID disrupts futures, fractures connections, and creates daily challenges that ripple out to affect families, workplaces, and communities.
Moving Forward: Addressing Long COVID
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 the cascading effects of the condition, and ignoring its scale and severity risks exacerbating inequality and its impact.
By developing services grounded in lived experience, there is potential 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. Individuals need assistance managing fatigue through strategies like “pacing” and energy conservation. Workplaces should accommodate employees with long COVID by reducing hours, redesigning job demands, and offering flexible leave. Additionally, support is necessary to help individuals rebuild social connections.
All of this requires thoughtful assessment and treatment of people with long COVID. Listening to patients and valuing their experiences is a crucial first step in addressing this complex and far-reaching condition.
The Conversation acknowledges the contributions of the following co-authors of the research mentioned in this article: Tanita Botha, Fisaha Tesfay, Sara Holton, Cathy Said, Martin Hensher, Mary Rose Angeles, Catherine Bennett, Bodil Rasmussen, and Kelli Nicola-Richmond.
