Patients with Long COVID forced to become their own doctors

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, published in Sociology and conducted in collaboration with Professor Deborah Lupton from the University of New South Wales, Sydney, Australia, 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.