Introduction ‘Invisible’ conditions like migraine may leave individuals seeking support and information. We aimed to describe how people with migraines use and benefit from social media and to identify harms of social media use.

Methods Twenty participants were recruited via migraine charities. Semi-structured interviews were conducted with questions based on a topic guide. Interviews were transcribed and analysed using thematic analysis.

Results We found people with migraine use social media to better understand their condition and treatment options. It offers instant access to continuous information and social support from empathic others. Participants viewed social media as an outlet to vent frustrations and to validate their migraine experience. They referred to the invisible and episodic nature of migraine which contributes to misunderstanding of the impact and/or severity of the condition. Some masked their online migraine-related behaviour, using different sites or closed online groups, which sometimes changed their online behaviour in other areas. Harms of social media included inaccuracy of information, occasional negativity, and privacy issues.

Conclusions Social media can provide people who experience migraines with instant, continuous access to social support and health information, from empathic others. This can validate their illness experience, reassure and help to reduce feelings of isolation.