People with chronic illness often fluctuate between “good days” and “bad days” where symptoms are more or less severe depending on a range of factors and triggers. Our research contributes preliminary empirical knowledge on technology use during chronic illness depending on fluctuations in symptoms over time. We conducted a scoping study with people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to understand how their illness shapes how they use technologies in their everyday lives. This research contributes a timely HCI lens on the under-researched illness of ME/CFS, proposes the “trajectories of technology use” model that can be used to articulate how technologies are used during chronic illness, and points to design openings for technologies that are more accessible for people who experience chronic fatigue, sensory sensitivities and cognitive limitations. These design openings include non-screen-based technologies, and designing technologies that acknowledge and adapt to the changing body during fluctuations in symptoms.

Co-authored with Léa Paymal and published at CHI 2023.