Denying and Accepting a Family Member’s Illness: Uncertainty Management as a Process

Thompson, Charee M.; Romo, Lynsey K.; Pulido, Manuel D.; Liao, Danni; Kriss, Lauren A.; Babu, Sara

doi:10.1080/10410236.2021.1964713

Cited by 8 publications

(7 citation statements)

References 33 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…As a result, this study offers further avenues to explore narrative-based resilience scholarship in the face of disruptive life events (Betts et al, 2022), like chronic illness (Venetis et al, 2020). Finally, this study contributes to a growing body of communication scholarship on autoimmune disease (Castle & Koenig Kellas, 2019; Gunning, 2022; Thompson, Pulido, et al, 2022) and dismissive and disenfranchising experiences for individuals with chronic illness and pain (Gunning & Taladay-Carter, 2023; Hildenbrand et al, 2022; Hintz & Tucker, 2023), notably women (Hintz, 2022; Thompson, Babu, & Makos, 2022, 2023).…”

Section: Discussionmentioning

confidence: 85%

“…This experience of contestation is exacerbated for women and patients who were assigned female at birth due to historic ideologies of the hysterical female patient that positioned AD as a psychiatric disorder (Hintz, 2022; Thompson, Babu, & Makos, 2022). As a result, many women spend years seeking validation, diagnosis, and treatment for their (often invisible) symptoms (Thompson et al, 2023). When a patients’ illness narrative and biomedical markers of disease (e.g., blood tests, x-rays) are not aligned, their story is more likely to be dismissed (Japp & Japp, 2005).…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

“Being Sick Does Not Define You”: Communicated Narrative Sense-Making of Autoimmune Disease in Emerging Adult Women in the U.S.

Gunning,

Koenig Kellas

2023

Emerging Adulthood

View full text Add to dashboard Cite

The onset of autoimmune disease (AD) in emerging adulthood is a disruptive illness experience that is difficult to make sense of. Compounded by hegemonic ideologies, including the master illness narrative of restitution and stereotype of the hysterical female patient, women with AD struggle with narrative coherency. Guided by the retrospective storytelling heuristic of communicated narrative sense-making theory (CNSM), the present study investigates the meanings, values, and beliefs found in emerging adult women’s narratives of AD onset and diagnosis. Using qualitative in-depth interviews, findings identify how young women experiencing disruptive chronic illness at a formative age make sense and meaning of their experience, highlighting the role of identity (re)construction and resistance to dominant narratives. Framed as lessons learned, themes include rediscovering trust in self, separating self from illness, creating and committing to new normals, challenging assumptions about illness, and recognizing privilege and disparities in care. Theoretical and practical implications are discussed.

show abstract

Section: Discussionmentioning

confidence: 85%

Section: Introductionmentioning

confidence: 99%

“Being Sick Does Not Define You”: Communicated Narrative Sense-Making of Autoimmune Disease in Emerging Adult Women in the U.S.

Gunning,

Koenig Kellas

2023

Emerging Adulthood

View full text Add to dashboard Cite

show abstract

“…The ToMM framework has been used similarly by Droser & Seurer (2022) to identify the appropriate words to say to a loved one experiencing grief and loss. Additionally, these findings build upon Thompson & Duerringer's (2020) and Thompson et al's (2021) research on invalidation and contestation of illness by family members by providing supportive and belief-centered messages that family members can communicate to the member with illness, amidst their doubt and uncertainty. Research that seeks to eradicate blatant contestation and develop support language for situations of unknown chronic illness and pain can guide patient-practitioner communication and collaboration toward quality-of-life treatment and care.…”

Section: Theoretical Implicationsmentioning

confidence: 77%

“But you don’t look sick:” Memorable messages of emerging adulthood autoimmune disease

Gunning

2022

Journal of Social and Personal Relationships

View full text Add to dashboard Cite

Background: Experiencing the onset of autoimmune disease in emerging adulthood is disruptive and difficult to make sense of because youth and illness are not expected to co-exist. As a result, emerging adults with autoimmune disease are susceptible to messages that discredit and deny their health experiences. Though communication research has explored dismissive and disenfranchising communication in the face of chronic illness, a need for how to disrupt and replace this harmful or inadequate messaging remains. Purpose: Building upon prior memorable messages research that centers the call “I wish,” asking individuals not only about messages received but messages desired, the present study identifies harmful and helpful memorable messages in the face of autoimmune disease onset and diagnosis. Research Design: Guided by Cooke-Jackson & Rubinsky’s (2021) theory of memorable messages and call for research on message disruption, the present study explores the messages 25 assigned female at birth (AFAB) individuals with autoimmune disease received during their illness journeys using individual, semi-structured interviews. Results: Findings reveal messages of dismissal, blame, and presumed psychosis (e.g., “it’s all in your head,” “but you look healthy”) as characterizing the diagnostic journey. Participants identify messages of belief, support, and interest (e.g., “I believe you,” “you are not alone,” “help me understand”) as being helpful while navigating their disease. Conclusion: Findings illuminate how family members, friends, health care providers, intimate partners, and relational others can effectively support emerging adults navigating a difficult and disruptive health experience. Limitations and future directions are discussed.

show abstract

“…When family members were deceased, interviewees expressed guilt and remorse in ways that suggest that their identity gap management remains incomplete. At the same time, such realizations may necessitate extended time horizons, as identity negotiation amidst illness uncertainty is influenced by other processes, including individual development and illness progression, that can vary and intersect in complex ways (Brashers et al, 2000; Miller & Caughlin, 2013; Thompson et al, 2021).…”

Section: Discussionmentioning

confidence: 99%

“…As part of a larger project on evolving uncertainty about a family member’s health issues (e.g., Thompson et al, 2021), two authors conducted semi-structured interviews with 33 adults living in the U.S. about “a family member whose health you doubted, but now believe” (as stated in the study advertisement). Interviewees were ranged from age 26 to 70 ( M = 39.85, SD = 11.33), and 51.5% identified as male and 48.5% as female.…”

Section: Methodsmentioning

confidence: 99%

“I changed, I had to realize that I was wrong”: Identity gap management amidst evolving illness uncertainty

Thompson

Babu

Romo

et al. 2021

Journal of Social and Personal Relationships

Self Cite

View full text Add to dashboard Cite

Doubt that a family member’s health issues are real, severe, or even possible entwines some of the most challenging aspects of medical, personal, and social uncertainty. Although several studies have examined doubt, this investigation focuses on how doubt evolves and foregrounds the identity implications of uncertainty. Guided by Communication Theory of Identity (CTI), the purpose of this study was to explore the identity gaps people experience as they navigate evolving doubt about a family member’s health and how they manage those identity gaps. We interviewed 33 individuals in the U.S. about a family member’s health issues that they doubted but began to believe. Our analysis uncovered three identity gaps among personal, relational, and enacted layers of identity: personal-enacted, relational-enacted, and personal-relational-enacted identity gaps. Participants managed identity gaps in two primary ways: (a) closing gaps by altering personal, relational, or enacted layers of their own identity; and (b) maintaining identity gaps by putting the locus of responsibility for identity change within their family member’s relational identities. This study offers theoretical implications for CTI as well as practical implications for individuals navigating doubt and evolving illness uncertainty in their family relationships.

show abstract

Denying and Accepting a Family Member’s Illness: Uncertainty Management as a Process

Cited by 8 publications

References 33 publications

“Being Sick Does Not Define You”: Communicated Narrative Sense-Making of Autoimmune Disease in Emerging Adult Women in the U.S.

“Being Sick Does Not Define You”: Communicated Narrative Sense-Making of Autoimmune Disease in Emerging Adult Women in the U.S.

“But you don’t look sick:” Memorable messages of emerging adulthood autoimmune disease

“I changed, I had to realize that I was wrong”: Identity gap management amidst evolving illness uncertainty

Contact Info

Product

Resources

About