Among the Metavivors: Social Media and Illness Narratives of Stage IV Breast Cancer Patients

Abstract

Dominant breast cancer narratives equate early detection and screening with “cure,” advocate for “awareness,” and identify women who undergo treatment for early stage disease as “survivors.” Left out of these narratives are the “metavivors”: women and men diagnosed with “incurable” metastatic breast cancer, also known as Stage IV. This article uses case studies to profile four women living with metastatic breast cancer who turn to social media to tell their stories: Sally, a former civil rights attorney turned breast cancer activist, who uses social media platforms to organize and mobilize Stage IV patients to advocate on their own behalf; Jane, who plows through databases of dense medical research to find treatments to save her own life; Jenny, a young mother dying of metastatic breast cancer who shares her experiences on a YouTube channel; and Grace, who participates in an early-stage clinical trial that she believes “cured” her, a term eschewed by both the medical establishment and fellow metavivors.