Illness Narratives and Facebook: Living Illness Well

Abstract

Earlier scholarship provides important insights into the relationship of individual stories and narratives. Interactions with healthcare professionals and the healthcare system can often subsume the individual’s authority/agency. The patient’s narrative often gets lost in the elaborate web of doctor visits, referrals, medical records, case notes, etc. Online spaces such as Facebook, however, provide individuals with a platform through which they can understand, craft, and communicate their own personal illness narratives. Realizing this, this paper examines how the narratives of illness shared in illness-related Facebook groups help individuals make sense out of the disruption caused by their personal experience while residing in the ‘kingdom of the ill.’ To observe the construction and communication of these narratives, the researchers observed the activity of an online pulmonary embolism and deep-vein thrombosis survivor support group for one year. In this online space, individuals gained agency and authority in the construction of their own illness narratives. The findings of the research demonstrated both the importance of narrative in an individual’s health/illness journey as well as the need to further explore avenues that establish and bolster patient agency within the medical system.