ABSTRACT
Guided by theories of communicative disenfranchisement (TCD) and memorable messages (ToMM), this study analyzes 60 open-ended survey responses detailing experiences of grief following the onset of invisible, physical illness (e.g., chronic overlapping pain conditions, autoimmune rheumatic diseases). Employing reflexive thematic analysis, we identify (1) illness-related losses that are disenfranchised by discourses surrounding grief and (2) opportunities to enfranchise these losses via memorable messages. Situated at two points in time, before and after the onset of illness, we identify disenfranchised losses as what once was (e.g., physical [in]dependence, relational connection, images of self, and trust in institutions) and what will never be (e.g., family planning and career dreams). Next, we identify opportunities to disrupt this disenfranchisement through memorable messages of presence (e.g., nonverbal acknowledgment and verbal expressions of belief) and finding the fit (e.g., physical restructuring and community connection). In doing so, we extend theoretical understanding of both memorable messages, in the form that they can take (of experience) and as points of (dis)enfranchisement, and communicative (dis)enfranchisement. This study contributes to a growing body of health communication research on disenfranchising experiences in chronic illness by highlighting a resulting experience of illness not often talked about – illness-related loss and its grief process. Theoretical and practical implications, as well as limitations and future directions, are discussed.
Acknowledgements
We would like to thank Drs. John Christensen, Elizabeth Hintz, and Valerie Rubinsky for their support and guidance throughout this study.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Data availability statement
The data set is not available for public access
Correction Statement
This article has been republished with minor changes. These changes do not impact the academic content of the article.
Notes
1. We include participant ages in parentheses following their pseudonym.
2. Due to the nuance of illness experiences (and associated stigma) for those with mental and/or physical conditions, we elected to constrain our population to those who had at least one physical health condition. For research on memorable messages of mental illness, we point readers to Flood-Grady et al. (Citation2021) and Flood-Grady and Koenig Kellas (Citation2018).