Denied support, long COVID patients turn to self-tracking and online groups for care

Despite the increasing recognition of long COVID as a condition, many patients still face dismissal by medical professionals, misattribution of their symptoms to psychological causes, or simply being left to fend for themselves. The study describes the response many encounter from professionals as “medical gaslighting,” disbelief and dismissiveness.

The study, conducted in collaboration with Professor Deborah Lupton from the University of New South Wales, Sydney, Australia, and published in Sociology, found that people with long COVID are turning to wearable devices and online patient communities to make sense of their symptoms, identify patterns and triggers, and develop their own care plans.

The research found that the study participants, most of whom are highly educated and professionally employed (although more than half were unable to work at the time of the interview because of their illness), are using data from smartwatches and symptom-tracking apps to evidence their symptoms to their medical practitioners and advocate for diagnostic tests.

In some cases, participants felt it was only because of their self-tracking data that they had been able to get referrals to tests or specialists and subsequently obtain formal diagnoses and access treatment.

Dr. Sazana Jayadeva, co-author of the study and Surrey Future Fellow in the Department of Sociology at the University of Surrey, said, “We found that people with long COVID are often left to fend for themselves in a system that isn’t adequately informed about their condition and doesn’t offer them appropriate medical support. Digital self-tracking, combined with the expertise shared in online patient groups, offers a vital source of knowledge, validation and practical care.

“But it shouldn’t fall to patients to do this work alone. And not all patients have the resources and capacities to usefully engage with self-tracking technologies and advocate for themselves.”

The study found that online patient groups are not only sharing advice on which metrics to monitor and how to interpret data, but are also contributing to the uptake of self-tracking technologies by people with limited to no previous experience or interest in tracking. The study also found that having wearable data gave patients greater confidence to advocate for themselves in medical contexts.

Yet many still felt their data was disregarded or even resented. The study identifies this digital evidence as a tool for reducing the power imbalance between patients and doctors—but only where clinicians are willing to listen.

Jayadeva said, “We need a shift in medical culture, and we urge practitioners to treat patient-generated data as a valuable resource. Without this shift, patients with contested illnesses like long COVID risk remaining stuck in a system where they have to be their own doctors.”