E3 PreliminaryPreliminaryPEM ?Cross-SectionalPeer-reviewedMachine draft
Contesting misrecognition online: Experiences of epistemic in/justice by vloggers with contested illnesses.
Groenevelt, I P Irene, de Boer, M L Marjolein · Social science & medicine (1982) · 2023 · DOI
Quick Summary
This study looked at how seven Dutch women with ME/CFS and other contested illnesses used video blogs (vlogs) to share their experiences online. The researchers found that these women felt their knowledge and experiences were often discredited because of prejudice against their illnesses—a problem called "epistemic injustice." While vlogging helped some women feel more empowered to share their true experiences, they still faced challenges from YouTube's design and social pressure to soften their messages.
Why It Matters
This research highlights a critical but often overlooked dimension of living with ME/CFS: the social and epistemic burden of having one's illness disputed or discredited. Understanding how patients navigate these challenges through digital platforms can inform patient advocacy strategies, help clinicians recognize epistemic injustice as part of the patient experience, and demonstrate why respectful recognition of patient knowledge matters for wellbeing.
Observed Findings
- Women with contested illnesses reported experiencing epistemic injustice wherein their knowledge and testimony were discredited due to identity-based prejudices.
- Vlogging was perceived by participants as potentially empowering for breaking epistemic smothering (self-censoring of true experiences).
- Despite vlogging efforts, participants continued to experience epistemic smothering, indicating incomplete liberation from this pattern.
- YouTube's ableist design features and gendered social norms were identified as structural obstacles to achieving epistemic justice.
- Experiences of vlogging's emancipatory potential were diverse and ambiguous across the seven women studied.
Inferred Conclusions
- Social media platforms hold promise for contestedly ill individuals to resist epistemic injustice and share authentic experiences, but this potential is incomplete and context-dependent.
- Structural and cultural features of digital platforms (ableist design, gendered norms) actively obstruct patients' ability to achieve full epistemic justice.
- Individual user experiences with social media activism are heterogeneous, requiring attention to the varied and sometimes contradictory outcomes for different people.
- Breaking epistemic smothering requires not only individual voice amplification but also systemic changes to platform design and broader social attitudes.
What This Study Does Not Prove
This study does not establish that vlogging is an effective clinical treatment or universally beneficial intervention for all ME/CFS patients—experiences were diverse and ambiguous. It cannot determine causation between platform design and epistemic injustice; it only describes the experienced barriers. The findings cannot be generalized beyond the specific Dutch context or the seven participants studied.
Tags
Method Flag:Small SampleExploratory Only