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

Abstract

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.

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

“…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).…”

“…Many participants spent years seeking a diagnosis, often encountering dismissive and invalidating messages along the way (e.g., “it’s all in your head”, see Gunning, 2022), which impacted their trust and belief in self. As a result, participants recounted the process of (re)learning to trust themselves and advocate for their needs in medical interactions.…”

“…Another lesson participants discerned from telling their illness stories was not to make assumptions about others’ health based on outward appearance. This often was a result of others’ making assumptions about theirs (“but you don’t look sick”; Gunning, 2022). Participants reflected upon the importance of challenging ableist ideologies surrounding illness and (disability) and developing empathy, with Henry expressing, “you do not have to have a chronic illness to be empathetic and to care for someone with chronic illness.” Lizzie (SLE, 27) reflected, “my perspective about illness changed over time [in that] I don’t like to make assumptions about other people’s health or illness, because I don’t like when people do that to me.” This sentiment was echoed by Claire (narcolepsy and unspecified inflammatory arthritis, 22), who shared:It's definitely [made] me have more empathetic thoughts… realizing that there is legitimacy to feeling sick.…”

“…Another lesson participants discerned from telling their illness stories was not to make assumptions about others' health based on outward appearance. This often was a result of others' making assumptions about theirs ("but you don't look sick"; Gunning, 2022). Participants reflected upon the importance of challenging ableist ideologies surrounding illness and (disability) and developing empathy, with Henry expressing, "you do not have to have a chronic illness to be empathetic and to care for someone with chronic illness."…”

“…As a result, emerging adults experiencing the onset of chronic illness symptoms struggle to find stories like theirs, resulting in mental health and identity impacts, including depression, anxiety, and fear for the future (Wilson & Stock, 2019). Due to their age, patients may experience contestation , or disbelief, of their symptoms by healthcare providers (Bontempo, 2022; Hildenbrand et al, 2022) and relational others (e.g., family members, friends; Hintz & Wilson, 2021; Thompson & Duerringer, 2020; Thompson et al, 2023), being told that they are too young to be sick (Gunning, 2022). As a result of contestation and a lack of stories that mirror their own experiences, emerging adults with chronic illness grapple with cognitive dissonance as they compare their former “well” selves to their new “ill” or “abnormal” identities, alongside their “normal” peers and relational others (April et al, 2021; Wilson & Stock, 2019).…”