‘Does anyone else have this?’ The role of emotion in forum discussions about medical conditions affecting sex characteristics

Abstract

When people experience rare medical conditions or variations, searching online may be the only way to find others with similar experiences. This study examines what happens when people do just that. The dataset for the research has been generated from online posts by people living with variations of sex characteristics, which some call intersex variations. Our analysis focuses on how emotion appears in online posts, how affect becomes embodied in digital contexts, and how norms are negotiated as people relate to one another about the variations that some of them experience. We offer an analysis grounded in digital affect theory to contribute to health research literature. We suggest how health researchers and healthcare providers might develop more nuanced understandings of the emotional realities of people living with variations of sex characteristics.

Keywords:

• Intersex
• variation of sex characteristics
• diverse sex development
• emotion
• online

Notes

Acknowledgements

Thanks to Benjamin Hanson for contributing to the online data search that underpins this research. We also acknowledge the anonymous forum contributors whose posts made this research possible.

Disclosure statement

The authors have no conflict of interest to report.

 

 

Data availability statement

The dataset is not available due to confidentiality requirements.

Notes

1 The term “dsd” can mean: disorders of sex development or differences of sex development. For discussion of the terminological debate, see: Delimata et al. 2018; Lundberg, Hegarty and Roen 2018; Davis 2015, 2014).

2 We would like to acknowledge the contribution Peter Hegarty has made to our thinking here.

Additional information

Funding

This work was supported by The Research Council of Norway under grant number 247921/O70.