Lived Experience – Impact on People with Eating Disorders

Issues Examples
Eating disorder experience, behaviours and coping
  • Worsening of eating disorder symptoms, reactivation of symptoms despite treatment
  • Additional anxiety and stress, contributing to emotional eating
  • Secrecy about symptoms, hiding eating disorder from others, loss of control over meals due to living with others, receiving criticism for eating behaviours
  • Eating disorder voice becoming stronger
  • Fear and shame – not wanting shop staff to notice food purchases, therefore using different shops to manage this
  • Less access to the social side of eating i.e. going out. Having to eat more alone, at home, increased restricted eating and worrying about this impacting recovery
  • Anxiety and depression contributing to low self-directedness, higher eating disorder symptoms leading to less-adaptive coping strategies
  • Increased compensatory exercise, exacerbated binge eating
  • Difficult to manage relationship with exercise
  • Disruption to routine and perceived control – more rumination about weight, exercise and meals, change to usual coping mechanisms
  • Lack of routine and structure both perpetuating and mitigating disordered eating
  • Increased drive for physical activity, eating, shape and weight concerns
  • Shortages and/or excess supplies of food, more likely to binge, guilt for eating, a more negative, purely functional unenjoyable relationship with food
  • Fear of deterioration in recovery, worry about potential reliance on behaviours that may interfere with recovery
  • Video calls heightening awareness of the bodily self, leading to self‐criticism that is potentially harmful to recovery
  • Feeling unsettled
  • More compulsion around food, food thoughts becoming more prominent as social activities became curtailed
  • Increased responsibility for oneself due to modified professional and personal support
  • More sedentary circumstances leading to consciously planned activities to intensify exercise routines
Additional distress
  • Loneliness, sadness, and inner restlessness and dysfunctional coping mechanisms
  • Increased interpersonal stress
  • Risk of suicide and/or self-harm
  • More severe pandemic related post-traumatic symptomatology, with symptoms predicted by childhood trauma and insecure attachment
  • Increased time online, increased food and exercise messaging in public discourse, increased social comparisons
  • Missing the casual nature of social interactions, harder to speak up, reduced access to organised social activities
  • Trying to balance conflicting priorities
Personal circumstances
  • Household arguments and fear for the safety of loved ones as contributor to increased symptoms
  • Helping others vs. helping oneself, with both potential positive and negative consequences.
  • Helping others gives a sense of purpose and counteracts loneliness, however, it also means the person’s own needs and health can come second
Support networks and treatment
  • Disruption to treatment outcomes, negative effects on work and treatment
  • Disparity in access to eating disorder services, reliance on remote support, premature discharge, disrupted transitions into community living, treatment suspended, limited post-diagnostic support, remaining on waiting list for treatment
  • Reduced contact from clinical teams, reduced time for professionals to address changes in treatment, more self-management of the illness by PWED
  • Unable to see supportive friends, increased social isolation
  • Lack of non-verbal communication due to use of phones and screens
  • Not being ‘bad enough’ or ‘sick enough’ to warrant support from a psychologist or psychiatrist
  • Feel disillusioned and without support
  • Access to care as frustrating and confusing

Sources: Baenas 2020; Branley-Bell & Talbot 2020; Castellini 2020; Fernández‐Aranda, Casas, Claes et al 2020; Graell 2020; Schlegl 2020; Termorshuizen 2020; Clark Bryan 2020; Brown 2021; Richardson 2020; Fernández‐Aranda, Munguía, Mestre-Bach et al 2020; Machado et al 2020; Phillipou et al 2020; McCombie et al 2020

Eating Disorders Awareness Week 2021March 1st-7th