|Institution:||University of the Arts London|
|Full text PDF:||http://ualresearchonline.arts.ac.uk/9196/|
Often externally invisible, and currently considered incurable, chronic lymphocytic leukaemia (CLL) presents with variable progression outcomes from indolent, through actively progressive, to terminal in some cases. Diagnosed with CLL myself, and having learned much of what I know about my disease online, this virtual ethnography triangulates autopathographic narrative with object oriented philosophies to map digital narrative circulations relating to the disease. Observing that key CLL online support sites function as hubs within complex networks connecting through to a variety of narrative enactments of CLL, this thesis draws on Actor-Network-Theory (ANT) throughout to explore and explain these narrative phenomena. The work shows that stories relating to CLL circulate in differing forms across networks peopled with varied actors (both human and non-human artefacts), key among which is the informed, connected and empowered ‘e-patient’. These digital actors mobilize a wealth of information from translations of the complex evolving science pushing the boundaries of biomedical understanding and treatment, to sharing the daily effects of living with a cancer whose sufferers record exceptionally low emotional well-being. By exploring the intersection of circulating narratives of a single disease online from a perspective of their material rather than representational effects, I locate them as inscriptions of the practices enacted by the individuals, organizations and institutions producing and putting them into circulation. In doing so, I argue that this study successfully puts into practice an innovative approach for studying disease and its narrative performances in online support and knowledge exchange networks, revealing complex networks of intersections among the multiple narrative inscriptions of CLL online. The work identifies some of the key actors and narratives engaged in that process, demonstrating some of the network effects produced when they come together. Notable among the multiple effects generated through these complex assemblages of collaborative narrative circulation in online communities are changing patterns of knowledge exchange in clinical relationships, an over-arching potential for a variety of forms of patient empowerment, and the emergence of new open and generative forms of digital pathographies.