Network Practice of Rare Disease Bloggers and Life Narrative: Take ALS as an Example

As a healing method, narrative is widely concerned by the medical community. The characteristics of "Hyper-temporal", "sharing" and "personalized" of new media provide convenient conditions for the self-performance of rare disease groups and also encourage them to re-choose narrative content and strategies. This paper adopts in-depth interview and text analysis to analyze the network practice and narrative behavior of Amyotrophic lateral sclerosis (ALS) web celebrities. The study found that the online narrative of ALS is not only the life practice of bloggers' self-healing, self-persuasion and self-empowerment, but also their positive response to real family and social responsibilities. At the same time, the online celebrity career of rare disease bloggers reflects their life courses in a certain sense. The social media accounts of rare disease bloggers are an important carrier for them to enrich themselves and place their feelings and expectations, and the continuation of their digital life has brought new philosophical and ethical thinking.