Denied support, long COVID patients turn to self-tracking and online groups for care
Long COVID patients are facing a new challenge in their healthcare journey as they navigate a system that often dismisses their symptoms or attributes them to psychological causes. A recent study, published in Sociology and conducted in collaboration with Professor Deborah Lupton from the University of New South Wales, sheds light on the phenomenon of “medical gaslighting” experienced by many long COVID patients.
The research highlights how patients with long COVID are taking matters into their own hands by utilizing wearable devices and online patient communities to track their symptoms, identify patterns, and advocate for themselves in medical settings. Despite being highly educated and professionally employed individuals, many long COVID patients find themselves unable to work due to their illness and are left to fend for themselves when seeking medical support.
Dr. Sazana Jayadeva, co-author of the study and Surrey Future Fellow in the Department of Sociology at the University of Surrey, emphasizes the importance of digital self-tracking and online patient groups as sources of knowledge, validation, and practical care for long COVID patients. She notes that while these resources are valuable, it should not solely be the responsibility of patients to advocate for themselves in a healthcare system that may not be adequately informed about their condition.
The study found that wearable data from smartwatches and symptom-tracking apps have empowered patients to request diagnostic tests and specialist referrals, leading to formal diagnoses and access to treatment. Online patient groups play a crucial role in sharing advice on self-tracking techniques and interpreting data, ultimately helping patients navigate their healthcare journey more effectively.
Despite the benefits of self-tracking technologies, many long COVID patients still face challenges in having their data recognized and respected by medical professionals. The study emphasizes the need for a shift in medical culture to treat patient-generated data as a valuable resource and reduce the power imbalance between patients and doctors. Without this shift, patients with contested illnesses like long COVID may continue to struggle in a healthcare system where they are forced to be their own advocates.
In conclusion, the study highlights the importance of self-tracking and online patient communities in empowering long COVID patients to take control of their health and advocate for themselves. By recognizing the value of patient-generated data and listening to patients’ experiences, healthcare professionals can work towards a more inclusive and supportive approach to managing long COVID and other contested illnesses.
