Long COVID

The World Health Organization defines long COVID as “the continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other explanation.” Long COVID is also known by other names such as Post-COVID-19 Condition (PCC) and Post-acute COVID-19 syndrome (PACS). Some people living with long COVID refer to themselves as “long-haulers.” In this study, we use the term long COVID because it is the term most often used by the people we interviewed.

The World Health Organization estimates that 10-20% of people develop long COVID after infection with SARS-CoV-2. In December 2023, Statistics Canada reported that about 3.5 million Canadians had experienced long-term symptoms from COVID-19, with about 2.1 million still living with symptoms. Current evidence shows that women, especially middle-aged women, are more likely to develop long COVID than men. There are a number of theories about why this might be the case but none has yet been proven. There is also evidence that a person’s level of education, social and cultural background, sexual orientation, and gender identity may play a part in determining their risk for developing long COVID.

It took some time for the formal medical system to recognize long COVID as an illness. In part, this was because it is so complex, can present so many different symptoms, and is, therefore, difficult to diagnose. There is also no single test that can be used to confirm a diagnosis. Patient groups around the world have led the way in advocating for long COVID to be recognized as a legitimate medical condition.

Common symptoms of long COVID include extreme fatigue, shortness of breath, and brain fog (difficulty concentrating or carrying out mental tasks). However, more than 200 symptoms associated with long COVID have been reported as impacting people’s ability to function day-to-day. At present there is no cure for long COVID and healthcare providers can only try to treat specific symptoms. Guidance for healthcare professionals and patients is only now beginning to emerge.

The long-term impacts of long COVID on individuals and society are not yet well understood but there are now dedicated research initiatives in many countries, working to improve our understanding of this condition. In Canada, the Canadian Long COVID Web research network is contributing to these efforts.

Our team interviewed 43 people from across Canada who shared their experiences of living with long COVID. We have organized the findings of our study under 25 topics that were important to them. You will learn about their symptoms and the impacts of those symptoms on their daily lives, their struggles accessing care, their strategies for coping and self-care, as well as what they found helpful in terms of information and support.