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, the narrative doesn’t conclude so neatly. Long COVID, defined by the World Health Organization (WHO) as symptoms persisting at least three months post-infection, has emerged as a persistent facet of the pandemic.
While research has predominantly focused on cataloging symptoms such as fatigue, brain fog, and breathlessness, the impact of these symptoms on daily life has been less explored, particularly in Australia. A new study published today seeks to address this gap, revealing that long COVID isn’t merely uncomfortable or inconvenient. According to participants, it can significantly restrict daily life, preventing them from fulfilling both personal desires and essential tasks.
Understanding Long COVID
Long COVID affects approximately 6% of those infected with the virus, with over 200 symptoms documented. For some individuals, these symptoms persist for several months, while for “long haulers,” they extend into years. The challenge in measuring the problem lies in the variability of symptoms from person to person, sparking debates about the nature, causes, and even the legitimacy of long COVID.
However, growing evidence underscores the reality and seriousness of long COVID. Studies have confirmed that it diminishes quality of life to levels comparable to chronic fatigue syndrome, stroke, rheumatoid arthritis, and Parkinson’s disease.
Insights from the Study
The study surveyed 121 adults across Australia who have been living with long COVID. These individuals contracted the virus between February 2020 and June 2022, with most aged between 36 and 50. Although the majority were not hospitalized and managed their illness at home, they continue to struggle with daily activities long after their initial infection.
Participants completed two widely recognized health research surveys: the WHO Disability Assessment Schedule (WHODAS 2.0) and the Short Form Health Survey (SF-36). These tools capture personal experiences and the lived reality of symptoms, offering insights beyond what medical tests can reveal.
People with long COVID reported worse disability than 98% of the general Australian population. A total of 86% of those with long COVID met the threshold for serious disability compared with 9% of Australians overall.
On average, individuals struggled with daily activities for about 27 days each month and were unable to function on approximately 18 days. Basic tasks like eating or dressing were less affected, but more complex activities such as housework and socializing were significantly impaired. While basic needs were often met, the ability to contribute to homes, workplaces, and communities was severely limited.
Implications and Global Context
International research echoes these findings. A study spanning 13 countries reported similar levels of disability, also noting that women exhibited higher disability scores than men. Long COVID’s multifaceted nature and its evolving impact challenge traditional healthcare approaches for chronic conditions.
Another critical insight from the study is the significance of self-reported outcomes. With no diagnostic test for long COVID, patients often encounter skepticism from healthcare professionals regarding their symptoms and their impact. Yet, the study demonstrated that individuals’ self-assessments of recovery strongly correlated with their disability and quality of life scores.
This shows self-reports are not just “stories”. They are valid and reliable indicators of health. They also capture what medical tests cannot.
For instance, fatigue extends beyond mere tiredness; it can lead to losing concentration while driving, abandoning hobbies, or withdrawing from cherished friendships. The study highlights how long COVID disrupts futures, severs connections, and creates daily struggles that ripple out to families, workplaces, and communities.
The Path Forward
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 long COVID, and ignoring its scale and severity risks exacerbating inequality and intensifying its impact.
To address these challenges, services must be developed based on lived experiences, aiming to restore not just health, but dignity and participation in daily life for those affected by long COVID. Rehabilitation and support services need to 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 for rebuilding social connections is essential.
All these efforts require thoughtful assessment and treatment of individuals with long COVID. Listening to patients and valuing their experiences is a crucial first step.
The research was co-authored by Tanita Botha, Fisaha Tesfay, Sara Holton, Cathy Said, Martin Hensher, Mary Rose Angeles, Catherine Bennett, Bodil Rasmussen, and Kelli Nicola-Richmond, with contributions from Danielle Hitch, Senior Lecturer in Occupational Therapy at Deakin University; Genevieve Pepin, Professor at the School of Health and Social Development, Deakin University; and Kieva Richards, Lecturer in Occupational Therapy at La Trobe University.
