Quantifying the Body and Caring for the Mind: Self-Tracking in Multiple Sclerosis

in CHI 2017, Conference paper (text), Denver, CO, USA


Consumer health technologies have an enormous potential to transform the self-management of chronic conditions. However, it is unclear how individuals use self-tracking technologies to manage them. This in-depth interview study explores self-tracking practices in multiple sclerosis (MS), a complex neurological disease that causes physical, cognitive, and psychological symptoms. Our findings illustrate that when faced the unpredictable and degenerative nature of MS, individuals regained a sense of control by intertwining self-care practices with different self-tracking technologies. They engaged in disease monitoring, fitness tracking, and life journaling to quantify the body and care for the mind. We focus attention on the role of emotional wellbeing and the experience of control in self-tracking and managing MS. Finally, we discuss in which ways self-tracking technologies could support the experiential nature of control and foster mindful experiences rather than focusing only on tracking primary disease indicators.