Communicating the experience of chronic pain through social media: patients’ narrative practices on Instagram

Background: The use of technologies in health is changing the relationship between patients and their conditions. In the case of chronic pain, social media are offering these individuals a new way to talk about their experience. The objective of this paper is to identify how and why patients are using these online platforms for pain communication. Particularly, this study analyses self-expression practices of this disease on Instagram. Method: A sample of posts was selected from the platform following a multistage sampling strategy (n = 350). These publications were examined through a qualitative analysis based on multiple categories related to the experience of chronic pain. Results: Patients are using Instagram to give visibility to illnesses such as fibromyalgia or endometriosis. Moreover, these individuals talk about their condition in terms of chaos and uncertainty, using the narratives to construct a world that gives meaning to their chronic pain. However, men are largely absent from these online practices. Ninety-four percent of the publications included in the sample were shared by women (n = 329). Conclusion: Findings indicate that Instagram is changing the way patients live with their chronic pain. Considering the complexity of this condition, care providers could improve the assessment of chronic pain by paying more attention to the self-expression practices of these individuals.