"You Don't Look Anorexic": Enacted and Internalized Experiences of Weight Stigma in Healthcare for Patients with Atypical Anorexia

Background and Purpose: Eating disorders (EDs) involve significant physical and psychological impairment. Patients with atypical anorexia (AAN) have all the cognitive and behavioral symptoms of anorexia nervosa, but present at higher weights, putting them at greater risk of weight stigma. For higher-weight individuals, weight stigma impacts experiences of healthcare, complicates disease trajectories, increases risk for EDs, and decreases health and quality of life. Studies suggest AAN patients may experience delays of care, misdiagnosis, and longer duration of symptoms compared to those with low-weight anorexia (Sawyer, et al., 2016). Investigating AAN patient healthcare experiences could inform recommendations to improve AAN referral and treatment.

The present study explored AAN patients’ lived experiences with weight stigma in healthcare. Research questions included: 1) How do patients with AAN report experiencing enacted weight-based discrimination enacted in healthcare settings? 2) How do patients with AAN report experiencing internalized weight bias as they seek treatment? 3) How do patients with AAN perceive experiences of stigma to impact their illness journey?

Methods: Thirty-nine adults with a history of AAN were recruited through two treatment centers, clinician referral, and online groups. Purposive sampling (Emmel, 2010) was utilized to attain diversity in age (range: 18-74), gender (20.5% trans/nonbinary), sexual orientation (35.7% heterosexual), race (71.8% white), and weight (Body Mass Index range 21.8-61.1). This study utilized audio-recorded, transcribed, validated, de-identified, semi-structured qualitative interviews guided by an arts-based prompt. Interview addressed provider interactions during help-seeking and treatment experiences. Data were coded and analyzed for themes with Dedoose software, using a thematic analysis approach (Huberman, Saldana, & Miles, 2014), guided by principles of narrative inquiry approaches to qualitative analysis.

Results: Findings revealed AAN patients reported instances of enacted discrimination across the illness experience, impacting journeys in the following ways: 1) during risk development (themes: pathologizing weight, praise ED behaviors), 2) mid-disorder (themes: missed screening opportunities, disbelieving ED, praising ED), 3) during treatment (themes: fat-phobic remarks, limited insurance), and 4) during relapse-prevention (themes: disbelieving ED history, overt discrimination, recommending ED behaviors). Findings also showed instances of internalized weight bias across the illness experience, including 1) during risk development (themes: body dissatisfaction, internalized thin ideal), 2) mid-disorder (themes: low self-advocacy, minimizing symptoms), 3) during treatment (themes: low self-advocacy, feeling out of place), and 4) during relapse-prevention (themes: body dissatisfaction, lack of body trust). Regarding impact on care, participants reported themes of delayed care due to missed screening, lower healthcare utilization, suboptimal treatment environments, and in some cases, provider-facilitated relapse.

Conclusions and Implications: Unfortunately, while early intervention predicts positive outcomes for EDs, higher-weight patients in this study reported lengthy treatment delay. Participants attributed delays to frequent instances of weight stigma throughout the illness experience, resulting in missed opportunities for screening, misdiagnosis, and healthcare avoidance. These findings suggest that addressing enacted weight stigma within medical and ED treatment systems may improve healthcare engagement and enhance quality of care for higher weight patients with EDs. Further, findings suggest that addressing internalized weight stigma may buffer against relapse for patients recovering from AAN.