To Örebro University

The main purpose of this thesis is to describe how situated health-related meaning-making about endometriosis is accomplished in three different health-related contexts. Health communication is ever relevant; throughout history, people have become ill, thought about their health and, in many cases, sought care. It is also a shifting practice, in the sense that it changes over time. This thesis explores health communication and negotiations of health and illness in three patient-oriented, alternative and new settings: knowledge negotiations in online discussion forums, seeking care through so-called ‘self-referrals’, and multimodal illness narratives.

Specifically, meaning-making about endometriosis is explored. Endometriosis is a chronic condition which, despite its high prevalence, is still relatively unknown, both in society at large and in actual healthcare encounters. This makes the disease a good example to highlight texts and interaction as health communication.

The thesis combines a discourse analytical and social semiotic framework, which entails a focus on knowledge, power and available resources for communicating about a disease. In the first study, discussion forum threads dealing with endometriosis are analyzed, showing how illness is negotiated by means of personal and particular experiences. In the second study, self-referrals written for specialist care are explored as an emergent genre, specifically highlighting the resources used to argue for care, as well as patients’ experiences of seeking care in this way. Finally, the third study analyzes illness narratives on Instagram, showing how illness is narrated on a specific platform, within a specific community.

Collectively, the three studies shine a light on different ways of participating in health-related settings, and how this is tied to expertise, personal experience, and patient agency. The thesis also contributes to our understanding of how illness communities are formed: the typical patient emerging is active and knowledgeable, fights for care and endures being questioned by a poor quality healthcare service.