‘A gift and a curse’: the benefits and limitations of self-tracking Long COVID, 2025, Jayadeva & Lupton

https://www.tandfonline.com/doi/pdf/10.1080/1369118X.2025.2483834

Sazana Jayadeva & Deborah Lupton (01 Apr 2025): ‘A gift and a curse’: the benefits and limitations of self-tracking Long COVID, Information, Communication & Society, DOI: 10.1080/1369118X.2025.2483834

‘A gift and a curse’: the benefits and limitations of self- tracking Long COVID

Sazana Jayadeva aand Deborah Lupton b

aSchool of Social Sciences (Sociology), University of Surrey, Guildford, UK;

bCentre for Social Research in Health and ARC Centre of Excellence for Automated Decision-Making and Society, UNSW Sydney, Sydney, Australia

ABSTRACT

People living with Long COVID are dealing with significant challenges related to limited understanding of this novel condition, social stigma, and lack of support from medical professionals and others in their lives.

This article discusses findings from a qualitative study about how people with Long COVID have spontaneously engaged in self-tracking for the purposes of understanding and managing their illness.

It draws on 30 semi-structured interviews with study participants in the USA, UK, Australia, Germany, Denmark and Canada.

The study’s findings reveal that the personal health data generated by people with Long COVID through practices of self-tracking create new forms of knowledge about a novel post-viral condition and to some extent challenge the power differentials and fraught sociopolitical climate of the pandemic.

The benefits provided by self-tracking data reflect the often psychologised and understudied position of post-viral conditions such as Long COVID.

All participants described self-tracking as a valuable tool to gain insight into symptoms and evaluate interventions.

It provided them with a sense of empowerment, control, encouragement, and very importantly, validation. However, for some participants, self-tracking their Long COVID symptoms was also sometimes experienced as overwhelming, anxiety-inducing, and frustrating.

The study findings are interpreted with references to the broader contexts of novel chronic illness, medical power, lay expertise, COVID politics and digitised information and care work.

 

From the abstract it’s not clear what the limitations and the curses are?

 

Yeah I had to skim the paper. The section subheadings offer a pretty good summary:

Self Tracking as a Curse

Overwhelming and tiring work

Anxiety and Discouragement

Poor Quality data and Inadequate or Problematic Features

 

Thank you!

That meshed well with my experience of wearable fb-groups. Some put a lot of effort into figuring out how their data matches with what they experience, and I’m not sure everyone benefits from it.

 

It's a shame things sometimes get sensationalised to make an eye-catching title. Plenty of people don't find tracking a gift or a curse, just something that helps a bit (or doesn't).

 

Suppose somebody developed Long Covid at age 20 in 2020. They could still be unwell in their 80s and I wonder if their condition will still be getting described as "novel"? I don't see much evidence that anyone is making any headway with a treatment or a cure. All I see, most of the time, is paper after paper after paper saying that people with LC have brains that don't work and which need "retraining".