“Ordinary days would be extraordinary”: The lived experiences of severe and enduring anorexia nervosa

Abstract

ObjectiveApproximately 25% of individuals with anorexia nervosa (AN) experience a chronic form of the disorder, referred to as severe and enduring anorexia nervosa (SE‐AN). Although the classification of SE‐AN remains preliminary, there have been increasing calls for a harm reduction‐based, collaborative treatment model for these patients. To provide such care for patients with SE‐AN, it is critical to listen to and learn from their lived experiences.MethodPatients (N = 17) admitted to an inpatient eating disorders program who met initial criteria for SE‐AN completed semi‐structured interviews about the course of their illness and prior treatment episodes. Interviews were audio recorded and transcribed. Data were analyzed using an inductive, reflexive approach to thematic analysis that examined common themes within and across interviews.ResultsThree themes were identified focused on (1) the all‐encompassing nature of SE‐AN, (2) treatment experiences, and (3) living with chronic illness. Within these themes, there were subthemes. Overall, individuals noted clear insight about their condition, both negative and positive experiences with previous treatment, and hope for better quality of life despite their illness.DiscussionIndividuals with SE‐AN describe their illness as a chronic condition and hope for a harm reduction‐based treatment. Future work, including the lived experiences of individuals with SE‐AN, is important to build our understanding of the classification and clinical characteristics of SE‐AN and to develop treatment approaches that may best serve these individuals.Public SignificanceMany people with anorexia nervosa do not achieve a full recovery despite repeated treatment episodes throughout their lifespan. Understanding the lived experiences of individuals with SE‐AN may help to inform future treatment development efforts that could improve eating disorder and quality of life outcomes for these patients.

Every mistake is a treasure: Lessons learned from the TRIANGLE trial for anorexia nervosa

“…A qualitative study of people receiving inpatient care for severe, longstanding AN highlighted the value of those connections, with participants sharing "It's not just the staff is incredibly nice… my peers are very nice. You know, it's just, it's welcoming… it's family… It's that feeling of being unconditionally valued as a person" and "on those days in which I can't hold hope out for myself, I know I can ask someone here to… I'm always able to sit down with a nurse or provider to hold that hope for me" (Cummings et al, 2023).…”

Discordant conceptualisations of eating disorder recovery and their influence on the construct of terminality

“…Conversely, providing narratives of hope across ED literature, clinical practice, and prevention strategies can lead to more treatment engagement [ 174 , 175 ]. Critically, multiple accounts from people with longstanding EDs report that hope is integral [ 7 , 10 , 12 , 17 , 157 ] across treatment methods or modalities [ 176 ], and across durations of ED, but especially for those with a longstanding ED [ 177 ]. Conceptualisations of futility and descriptions of a proposed ‘terminal’ stage of AN [ 6 , 75 , 178 ] frequently include experiences of iatrogenic harm, complex co-occurring diagnoses, not-responding to initial treatment/s, and hopelessness for recovery - rather than denoting a state of inevitable, irreversible illness, decline, and death.…”

“…For some individuals with EDs underserved by the ‘full-recovery’ paradigm, holding that EDs can be disabling while still affirming personhood and value alongside the presence of impairment from the ED may increase an experience of greater hope, autonomy, and efficacy [ 177 , 188 , 207 ]. Investing in and celebrating quality-of-life while currently living with an ED rather than in the theoretical ‘after’/remission from an ED may appear counter to commonly established narratives of recovery [ 176 , 207 ] - however, harm-reduction may present a more realistic and accessible option in the short and long-term for many people [ 12 , 188 , 207 ].…”