Paper short abstract:

On TikTok, young people with metastatic breast cancer (MBC) chronicle their experiences of living with MBC in ways that transform the genre of the health update, emphasize the need for advocacy and policy change, and document stories which are often excluded from public breast cancer messaging.

Paper long abstract:

On TikTok, young people with metastatic breast cancer (MBC) chronicle their experiences of living with their disease in videos that explain what is currently happening with their treatment. These “health update” videos keep their followers informed on a range of health-related phenomena.

Young folks with MBC reorient the conventions of social media updates to TikTok, modeling TikTok as a key part of accounting for and processing their experiences of chronic illness, in ways which go beyond representations of MBC. Considering the significance of social media use and storytelling within MBC research (Jacobson 2018, Mazza et al. 2022), I understand the processes of maintaining accounts centered around health updates to be evidence of feminist practices as described by feminist scholarship on women’s and young people’s ways of knowing as patients (Lorde 1979, Ehrenreich and English 1974).

These TikToks act as compelling evidence of the urgent need for advocacy and policy change, especially regarding new and more effective lines of treatment, as well as forms of feminist documentation and accounting of stories which are often excluded from public breast cancer messaging. I examine MBC health updates posted by young people on TikTok, and ask, what are the patterns and trends which characterize MBC update videos? What forms of media accounting (Humphreys 2018) do their creators adopt to not only self-disclose their diagnosis, but to explain its meaning and treatment trajectory? How do young people with MBC use TikTok to transform the genre of the health update?