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.
Highlights
Narrative and storytelling are mutable and often combine a variety of modalities and voices in a single event or become a single event told by multiple storytellers who have the common aim to inform, to entertain, to persuade, to build communal bonds, to strengthen relationships, to preserve self or to heal (Jaworksi and Coupland 2008, p. 25)
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.’
The mundane and the serious and there is an even greater need to examine the impact of these stories in this space on the individual’s master ‘life narrative’ as well as the sociocultural impact of a larger more nebulous ‘society.’ the power of the anecdotal data related to specific illness events is, in and of itself, worthy of further study by diverse others when one considers that the illness narratives created through social media shape and extend an individual’s illness experiences
Summary
Narrative and storytelling are mutable and often combine a variety of modalities and voices in a single event or become a single event told by multiple storytellers who have the common aim to inform, to entertain, to persuade, to build communal bonds, to strengthen relationships, to preserve self or to heal (Jaworksi and Coupland 2008, p. 25). Humanities 2019, 8, 106 others, is a means to confront the stigma or shame associated with being one who is labeled chronically ill, disabled, or ‘othered’ in some form by their illness experience These are individuals “who find themselves disqualified from whatever has been determined ‘normal’” Participation in the group, the sharing of one’s illness experience, privileges the story of the teller; the layperson’s lived experiences more than the experts’ science of medicine. The narratives in the Facebook group are “dialogic and interreliant—the experience being shared is the one created within the story, where teller and audience alike meet” 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.’
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