The best views come after the hardest climbs: Identity and community in infertility discourse on Instagram

Social media have become influential platforms in how we see and construct our identities, such as health and illness identities; Instagram in particular is a much-used platform to build communities around certain illnesses or medical trajectories. This paper therefore examines how women who are undergoing fertility treatment construct their identity and their experiences with infertility and fertility treatment on their Instagram accounts. We analysed 111 public Instagram posts and 10 bios from 5 English accounts and 5 Dutch accounts. We qualitatively coded the data in ATLAS.ti, and used discourse analytical methods to analyse extracts illustrating main trends.

Our results show that these Instagram users construct themselves and other community members as expert patients/clients, prospective parents, warriors and travellers, owners of a failing body, and infertility advocates. These identities are inextricably tied to the construction of infertility as having a profound psychological and social impact. These are aspects that are possibly easier to discuss in the context of Instagram, because of the possibility to share anonymously about a subject that is often still taboo, among other reasons. Additionally, while users foreground their highly personal, individual experience, these discursive constructions have an implicit and explicit community-building function, and consequently also generate and shape collective identities. This community building for instance happens through hashtags and interactional elements, shared specific (medical) terminology, and the use of specific emoji.

To conclude, our study shows how Instagram is used as a platform to highlight the complex, unique and highly personal experience of being in fertility care. This often seems to come with a (perceived) lack of agency, while at the same time, infertility perceives health and health care as malleable and controllable. Our data reflects that dealing with infertility is not just a medical, but also a psychological and social experience. At the same time, discussing this on Instagram comes with specific (perceived) affordances, and complex and sometimes antithetical dynamics around destigmatisation and community-building. These findings are useful for health care providers as they provide insight in clients’ experiences and their use of social media information and support.