Date
9-17-2026
Department
School of Communication and the Arts
Degree
Doctor of Philosophy in Communication (PhD)
Chair
Robert Mott
Keywords
health communication, patient-provider communication, online health information seeking, hypermobile Ehlers-Danlos syndrome, rhetorical situation theory
Disciplines
Communication
Recommended Citation
Martin, Kayla J., "When Illness is Invisible: The Rhetorical Situation of Internet-Informed Self-Identification in Hypermobile Ehlers-Danlos Syndrome" (2026). Doctoral Dissertations and Projects. 8936.
https://digitalcommons.liberty.edu/doctoral/8936
Abstract
The purpose of this qualitative study was to examine the rhetorical situation of diagnostic communications for individuals with hypermobile Ehlers-Danlos syndrome (hEDS) when presenting diagnostic information obtained online to medical providers in healthcare settings. The problem was that little was known about how individuals with hEDS communicatively negotiate internet-informed self-identifications or diagnoses within the rhetorical situation of patient-provider diagnostic interactions. The rationale for this research was that individuals with hEDS frequently experience significant diagnostic delays, symptom dismissal, and provider knowledge gaps that lead many to seek diagnostic information through online health information seeking (OHIS) and self-identification prior to obtaining a formal diagnosis. Understanding how these experiences shape diagnostic communication may contribute to health communication scholarship and improve patient-provider communication. The central research question for this study was, how do individuals with hEDS describe the rhetorical situation of presenting social media or internet-informed self-identification in clinical settings? Semi-structured interviews were conducted with 25 adult women clinically diagnosed with hEDS. Social media was used to purposively recruit participants, and interviews were conducted virtually through Microsoft Teams. Data were analyzed using Braun and Clarke’s (2006) reflexive thematic analysis approach and interpreted through the lens of Bitzer’s (1968) rhetorical situation theory to address the central research question. Findings suggested that participants engaged in extensive OHIS, adapted communication to enhance credibility with providers, encountered numerous diagnostic barriers, and experienced positive and negative impacts following diagnosis.
