Not Just a Headache: Qualitative Study About Web-Based Self-Presentation and Social Media Use by People With Migraine

Abstract

Background: To help with a long-term but invisible medical condition such as migraine, many people seek information and support on social media. The effect of using social media for people with migraine is not fully understood and remains to be investigated.

Objective: The aim of this study was to describe how people with migraine use social media and how social media use affects their identity and sense of self.

Methods: A total of 20 participants who experienced migraine were recruited via migraine-specific charities. Semistructured interviews were conducted with questions based on a topic guide. Interviews were transcribed verbatim, and transcripts were analyzed using thematic analysis.

Results: People with migraine are using social media to obtain information to better understand their condition and treatment options. Social media offers instant access to continuous information and social support. This exchange of social support and information was viewed as mutually beneficial. Participants viewed social media as an outlet to vent frustrations and validate the migraine experience. Several participants pointed out that the invisible and episodic nature of migraine can lead to societal misunderstanding of the impact and or severity of their condition. Some participants masked their online migraine-related behavior using different sites or closed online groups to control who saw their migraine-related content. Participating in closed social media groups sometimes changed Web-based behavior in other areas of the platform. This illustrates the complex relationship between migraine, social media, and identity.

Conclusions: How migraine is part of an individual's identity and how this is represented online can vary. Social media can provide people who experience migraine with instant and continuous access to support and information, from a group of empathic others with similar lived experiences. Social media is used to validate the illness experience, as well as provide reassurance and help reduce feelings of isolation.

Keywords: eHealth; internet; migraine; qualitative research; self-management; social media; social support.