When most people think of COVID now, they picture a short illness like a cold – a few days of fever, sore throat or cough before getting better.

But for many, the story doesn’t end there. Long COVID – defined by the World Health Organization (WHO) as symptoms lasting at least three months after infection – has become a lasting part of the pandemic.

Most research has focused on describing symptoms – such as fatigue, brain fog and breathlessness. But less is known about the effect on daily life, and this hasn’t been well studied in Australia until now. A recent study there suggests that Long COVID not only has a significant impact on the lives of patients, it can also mimic some disabilities or disabling conditions.

An Australian study, which was reported in the Conversation online news site, provides insights.

Long COVID affects about 6 percent of people with COVID, with more than 200 symptoms recorded. For some, it lasts a few months. For “long haulers” it stretches into years.

The size of the problem is hard to measure because symptoms vary from person to person. This has led to debate about what Long COVID really is, what causes it, and even whether it’s real.

But mounting evidence shows Long COVID is very real and serious. Studies confirm it reduces quality of life to levels seen in illnesses such as chronic fatigue syndrome, stroke, rheumatoid arthritis and Parkinson’s disease.

Here’s what people with Long COVID told the researchers, who surveyed 121 adults across Australia living with Long COVID. They had caught COVID between February 2020 and June 2022, with most aged 36–50. Most were never hospitalized, and managed their illness at home.

But months or years later, they were still struggling with daily activities they once took for granted.

To understand the impact, those surveyed were asked to complete two surveys widely used in health research to measure disability and quality of life – the WHO Disability Assessment Schedule (WHODAS 2.0) and the Short Form Health Survey (SF-36).

These surveys capture people’s own voices and lived experience. Unlike scans or blood tests, they show what symptoms mean for everyday life.

The results were striking.

People with Long COVID reported worse disability than 98 percent of the general Australian population. A total of 86 percent of those with Long COVID met the threshold for serious disability compared with 9 percent of Australians overall.

On average, people had trouble with daily activities on about 27 days a month and were unable to function on about 18 days.

Tasks such as eating or dressing were less affected, but more complex areas – housework and socializing – were badly impacted. People could often meet basic needs, but their ability to contribute to their homes, workplaces and communities was limited.

Quality of life was also badly affected. Energy levels and social life were the most impacted, reflecting how fatigue and brain fog affect activities, relationships and community connections. On average, overall quality of life scores were 23 percent lower than the general population.

International research shows similar patterns. One study across 13 countries found similar levels of disability. It also found women had higher disability scores than men. As Long COVID disability has many facets and can change a lot over time, it doesn’t fit into traditional ways of providing health care for chronic conditions.

Another key insight from the study is the importance of self-reported outcomes. Long COVID has no diagnostic test, and people often report that health professionals are skeptical about their symptoms and their impact. Yet the study showed people’s own ratings of their recovery strongly predicted their disability and quality of life.

This shows self-reports are not just “stories.” They are valid and reliable indicators of health. They also capture what medical tests cannot.

For example, fatigue is not just being tired. It can mean losing concentration while driving, giving up hobbies, or pulling away from cherished friendships.

The study shows Long COVID disrupts futures, breaks connections, and creates daily struggles that ripple out to families, workplaces and communities.

The study also notes that disadvantaged communities are even more likely to be impacted by the cascading effects of Long COVID. So ignoring the scale and severity of long COVID risks deepening inequality and worsening its impact even further.

The Conversation is a network of not-for-profit media outlets publishing news stories and research reports online, with accompanying expert opinion and analysis.

Access Press provides coverage of COVID issues with support from the Metropolitan Center for Independent Living (MCIL). Learn more at MCIL.

This activity is made possible by a grant from the Long COVID Program of the Minnesota Department of Health.