The benefits and limitations of self-tracking Long Covid

The benefits and limitations of self-tracking Long Covid

Jayadeva, S. and Lupton, D. (2025) summarised by Rachael McGill

Introduction

This article discusses findings from a qualitative study about how people with Long Covid have engaged in self-tracking to understand and manage their illness. It draws on 30 semi-structured interviews with people living with Long Covid in the USA, UK, Australia, Germany, Denmark and Canada who were invited to try self-monitoring practices. Participants used wearable devices including Garmin, Fitbit, Whoop, the Apple Watch, the Wellue ring, and their associated apps. They also used general health tracking apps like Welltory, as well as apps designed for tracking illness such as Bearable, Tachymon, Bowelle, and Visible.

Summary

Self-tracking was experienced as, in the words of one participant, both ‘a gift and a curse’. On the one hand, it was a valuable tool to gain insight into symptoms and evaluate and experiment with interventions, and provided participants with a sense of validation, empowerment and encouragement. On the other hand, it was also experienced as overwhelming, anxiety-inducing and frustrating. Through tracking, many participants identified correlations between their symptoms, activity and exertion levels, diet, medications, and metrics like heart rate and oxygen saturation, which they felt they would have been unlikely to notice otherwise. They also identified triggers that were exacerbating their symptoms and could evaluate interventions such as medications and supplements. Self-tracking was also used by participants as a tool for ‘pacing’ or managing their energy levels and avoiding over-exertion.

Having tools that helped them understand and make sense of their symptoms and find ways for managing and treating them made participants feel empowered and in control. Self-tracking also provided a sense of validation. After receiving ‘normal’ test results, despite being extremely ill, several people had wondered whether what they were feeling was ‘in their head’. Several participants also spoke about how their self-tracking data had helped family and friends accept the ‘truth’ of their illness. Self-tracking could however also be extremely time and energy-consuming. Seeing negative data and trends could be emotionally draining and anxiety-inducing. Self-tracking data could serve as an indicator that participants did not have much control over their illness. Most apps and wearables were designed for healthy users, so participants needed to find ways to ‘hack them’ for the purposes of tracking Long Covid, which was also a source of irritation.

Conclusion

The study found that the personal health data generated by people with Long Covid, through self-tracking, creates new forms of knowledge about a novel post-viral condition and to some extent challenges the power imbalances of the pandemic. However, in entrenched conditions of unequal power relations, where people with significant illness and disability face lack of validation by the medical profession, patient ‘empowerment’ and ‘engagement’  through digitised self-tracking is limited. The shift of power and expertise also brings with it digitised ‘care work’, in which patients are forced to fill the gap left by healthcare, sometimes adding to the burden of chronic illness.

Read the study here