ArticleJournal of medical Internet research2019
Not Just a Headache: Qualitative Study About Web-Based Self-Presentation and Social Media Use by People With Migraine.
Article in Journal of medical Internet research, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
What it found
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Who cites it
10 citing papers in PubMed.
- Impact of Migraine and its Management in 5 Gulf Countries: Results of Social Media Platforms Listening Study.JMIR formative research · 2026Article
- Pediatric Headache in the Age of Social Media: A Topical Review.Current pain and headache reports · 2026Review
- Adapting to life with chronic migraine: a qualitative study of lived experiences among multi-ethnic Asian patients.Frontiers in pain research (Lausanne, Switzerland) · 2026Article
- Migraine care in the digital era: social listening insights and neurologists' perspectives from Türkiye.Frontiers in digital health · 2026Article
- Digital Media Use in Adolescents with Migraine: A Topical Review.Current pain and headache reports · 2025Review
- Understanding public perceptions and discussions on diseases involving chronic pain through social media: cross-sectional infodemiology study.BMC musculoskeletal disorders · 2024Article
- Health equity, care access and quality in headache - part 1.The journal of headache and pain · 2024Review
- Problems in management of medication overuse headache in transgender and gender non-conforming populations.Frontiers in neurology · 2024Review
- Social Media Listening and Digital Profiling Study of People With Headache and Migraine: Retrospective Infodemiology Study.Journal of medical Internet research · 2023Article
- Patients' and Health Care Workers' Perception of Migraine Images on the Internet: Cross-sectional Survey Study.Journal of medical Internet research · 2021Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundTo 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.
objectiveThe 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.
methodsA 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.
resultsPeople 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.
conclusionsHow 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.
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