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 us. We 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 hospitalised 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, we asked them 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 per cent of the general Australian population. A total of 86 per cent of those with long COVID met the threshold for serious disability compared with 9 per cent 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 socialising, 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 per cent lower than the general population.

What are the implications? 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 our study is the importance of self-reported outcomes. Long COVID has no diagnostic test, and people often report health professionals are sceptical about their symptoms and their impact.

Yet our 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.