The risk of COVID-19 has been largely communicated only in terms of deaths and hospital capacity, with recovery and survival conflated with each other. Around one in three people with symptomatic COVID-19 still experience symptoms 12 weeks after onset (1). Long Covid can be experienced by all age groups and not only those with acute severe disease. The debilitating symptoms are wide-ranging, multisystemic, and predominantly fluctuating or relapsing. There is still much to understand about Long Covid, but what is not well understood should not be ignored.
Long Covid is likely the first illness in history that has been defined by patients through social media platforms such as Twitter and Facebook. People with Long Covid formed a movement that demanded recognition of what was happening to them. During the first wave of the pandemic in 2020, online testimonials of prolonged symptoms following severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection were the only source of reassurance to others with a similar experience, including this author (2). In the absence of any guidance or recognition about the possibility of a persistent illness, peer support is all that people with Long Covid had. Many previously healthy and active people described persistent symptoms of the acute illness that fluctuated, with new symptoms appearing weeks later. In many countries, most nonhospitalized people did not have lab confirmation of SARS-CoV-2 infection owing to lack of access to community testing, so their symptoms remained without a diagnosis.
By summer 2020, thousands were joining social media support groups. A common theme started to emerge: lack of recognition by the medical profession. Patients, including doctors, with Long Covid were consulting their health care providers, and their symptoms were commonly minimized, dismissed, or labeled as anxiety (3). A narrative emerged of people struggling to make sense of their symptoms and forming their own groups to understand and research what was happening to them in an international citizen science movement (4). The testimonials of people living with Long Covid demonstrated themes of stigma and discrimination.