Exploring the experience of being viewed as “not sick enough”: a qualitative study of women recovered from anorexia nervosa or atypical anorexia nervosa

Abstract

Background Despite common misconceptions, an individual may be seriously ill with a restrictive eating disorder without an outwardly recognizable physical sign of the illness. The aim of this qualitative study was to investigate the perspectives of individuals who have previously battled a restrictive eating disorder who were considered “not sick enough” by others (e.g., peers, families, healthcare professionals) at some point during their illness, and to understand the perceived impact on the illness and recovery. Such misconceptions are potentially damaging, and have been previously linked with delayed help-seeking and poorer clinical outcomes. Methods Seven women who had recovered from anorexia nervosa or atypical anorexia nervosa participated in semi-structured interviews. Interviews were transcribed and interpretive phenomenological analysis was used. Results Three main themes emerged: (1) dealing with the focus upon one’s physical appearance while battling a mental illness, (2) “project perfect”: feeling pressure to prove oneself, and (3) the importance of being seen and understood. Participants reported that their symptoms were occasionally met with trivialization or disbelief, leading to shame, confusion, despair, and for some, deterioration in eating disorder symptoms which drove further weight loss. In contrast, social support and being understood were viewed as essential for recovery. Conclusion To facilitate treatment seeking and engagement, and to optimize chances of recovery, greater awareness of diverse, non-stereotypical presentations of restrictive eating disorders is needed which challenge the myth that weight is the sole indicator of the presence or severity of illness.

Cross-analyzing addiction specialist and patient opinions and experiences about addictive disorder screening in primary care to identify interaction-related obstacles: a qualitative study

“…Our results suggest that when physicians avoid asking about problematic substance use, this can lead the patient to trivialize the problem, “if you don’t talk about it, there is no problem” [AS7]. This echoes the “not sick enough” concept known in other behavioral disorders [ 37 ]. Furthermore, the patient’s resistance to discuss their addiction until they cross their own red line can frustrate physicians [ 38 , 39 ]: “when you ask the question but don’t get an answer, it’s easy to get impatient.…”

Weighing in: qualitative explorations of weight restoration as recovery in anorexia nervosa

“…In the work of Federici and Kaplan [ 52 ], participants (selected by BMI from among hospitalized patients) reported that a contributing factor to relapse was that their AN was no longer taken seriously following weight restorative treatment. With interviewees who had been diagnosed with AN, Eiring and colleagues [ 21 ] initiated critical dialogue exploring how stereotypes of AN feed into ‘not sick enough’ consequences, including dangers that materialize from “proof” of illness confirmation that becomes requisite for support. Their findings, in tandem with this current study, offer critical nuance to a perception that “the tragic and nearly universal reality for those with eating disorders is that they often believe they aren’t sick enough to warrant changing their behaviors or seeking help” [ 61 , p4].…”

“…Consequently, we believe this approach strengthened the credibility and trustworthiness of the data given that “sharing personal information and divulging secrets more frequently than in face-to-face communications is one of the most consistent findings of anonymity studies” [ 51 , p5]. Further, we considered that respondents may have had previous disempowering evaluations of their bodies and appearance [ 21 , 52 ]. Respondents may bear heightened sensitivities towards power dynamics in methods that include in-person interactions and settings that emphasize researcher authority.…”

“…Severe cases of AN are among the costliest mental illnesses to treat, and so private insurance companies also minimize coverage [ 20 ]. For instance, individuals with an AN diagnosis who may need more intensive care, such as hospitalization, can be denied treatment for weighing too much [ 21 ].…”

Feasibility and preliminary effectiveness of a cognitive‐behavioral, family‐centered partial hospitalization program for adolescents with anorexia nervosa and atypical anorexia nervosa at six‐ and twelve‐month follow‐up

“…Findings from our study allude to the possibility that, relative to those with AN, individuals with AAN may struggle more with certain ED symptoms after leaving PHP, despite showing continued improvements in weight. Research suggests that individuals with AAN experience a similar psychological presentation and impairment as those with AN (Eiring et al., 2021; Sawyer et al., 2016). However, individuals with AAN also live in higher‐weight bodies than those with AN.…”