'But you don't look sick:' hypothyroid narratives shared on Instagram.

Abstract

Background: This study focused on how narratives with hypothyroidism are rhetorically constructed in online spaces, specifically, on Instagram. Currently, hypothyroid patients represent the majority of the approximately 20 million Americans with thyroid disease, and the use of Instagram as a platform allows for unique, multimodal rhetorical constructions that focus on visual narratives and reveal how thyroid patients understand themselves, their condition, and their standing in institutional settings.

Methods: Using a phenomenological approach, five public Instagram accounts owned and maintained by thyroid patient advocates who have 'influencer' status were identified. From these accounts, 100 posts were analyzed that specifically discuss major phenomena in the life of a thyroid patient.

Results: Although each patient-advocate had their own style when creating posts, they are united in their pursuit of promoting community-building and institutional change through digital activism founded on narrating experiences dealing with hypothyroidism. Furthermore, their choice to focus on visual story-telling through Instagram posts emphasizes the way that invisible illnesses are continuously mischaracterized.

Conclusion: The results indicated that patient-advocates' narrative posts highlight the variance in which hypothyroidism presents, which may contribute to misunderstandings surrounding the condition and others like it in and out of clinical spaces. The choice to use social media to present these messages to the thyroid community and the public is significant because it illustrates the desire for change through a participatory culture mediated through digital activism. Furthermore, using social media presents a way to relay these narratives outside of institutional barriers and rebuke.