“It is the only constant in what feels like a completely upside down and scary world”: Living with an eating disorder during COVID-19 and the importance of perceived control for recovery and relapse.

Abstract

The COVID-19 pandemic has had a profound, negative impact on the lives and wellbeing of much of the population, and it can raise additional challenges for individuals with eating disorders (EDs). During early stages of the UK lockdown, individuals reported disruptions to many aspects of their lives, including reduced feelings of control and serious concerns over the impact of the pandemic on ED symptoms and/or recovery. This study applied a mixed-methods online survey to collect responses from 58 individuals (age 16-65yrs) with lived experience of EDs. Data was collected across two time points (April 2020 and June 2020) to explore the ongoing impacts of the pandemic on this population. The results suggest that higher perceptions of general, external control may be associated with ED recovery. Quantitative results show that individuals who reported recovering from their ED since the first time point, also reported significant increases in perceived control (compared to individuals who had relapsed or whose ED status was unchanged). Thematic analysis generated two themes: ED behaviours as an ‘auxiliary control mechanism’, and loss of auxiliary control after lockdown. Individuals who experienced less perceived control reported a tendency to rely upon eating disorder behaviours as an auxiliary coping mechanism, i.e., diminished external control was directed inwards and replaced with controlling their own behaviour. The preliminary results suggest that perceived control may be a significant factor in ED recovery. Individuals with EDs may be at significant risk of detrimental impacts on their recovery and wellbeing because of the pandemic reducing peoples’ sense of control. These preliminary findings highlight the need for further research in this area, including investigation around potential interventions based upon strengthening perceptions of control to promote ED recovery.