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, exercise routine
  • 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
  • Pandemic restrictions as disruptive to recovery mindset and recovery-oriented practices
  • Feeling unsettled, struggling to regulate food intake
  • 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
  • Exercise as stressful rather than for coping
  • Working from home – more freedom and flexibility to engage in eating disorder behaviours
  • Pandemic online discourse – diet, fitness, exercise – promoting eating disorders behaviours, more comparisons on social media
  • Loss of motivation to work on recovery, loss of goals
  • Risks with self-monitoring of weight and experiencing this as stressful
  • Feeling of being watched
  • Less meal structure, increased binge eating, vomiting
  • Stockpiling of food items, such as those deemed “binge-worthy,” leading to intense negative reactions and compulsive urges to act on disordered thoughts and feelings.
  • Misusing medications to suppress weight gain, or laxatives to suppress appetite or lose weight.
  • Feeling ashamed of the associated health outcomes with eating disorders and reluctance to tell others of their physical distress or seek medical care
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
  • Higher levels of stress, anxiety, depression and PTSD-related symptoms, fear of losing control
  • 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
  • Lack of value, purpose and routine – lack of motivation
  • Substance use as short-term coping
  • Fear of Covid-19 infection
  • Feeling defeated by negative emotions linked to current events
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
  • People living alone – feeling confined and isolated, lack of social connection contributing to eating disorder behaviours
  • Lack of privacy, feeling monitored by others – leading to distress, low mood, conflict or withdrawal
  • Stress and exhaustion of caring for others – children, working from home less time for caring for oneself
  • Worrying about others being infected
  • Interacting more often with friends or family, including at mealtimes. This leading to feelings of sadness and anger when family members criticised, dismissed or ignored eating behaviours
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
  • Treatment delayed or stopped, loss of specialised support, GP support
  • 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
  • Feeling of wanting to wait until the end of lockdown before seeking support
  • Feel disillusioned and without support
  • Access to care as frustrating and confusing
  • Sense of detachment with online support, home space not feeling confidential, internet issues, connection with therapist feeling less personal
  • Changes in staff and treatment in inpatient settings, difficult to build relationships with clinicians
  • Inpatient patients not being able to see parents, siblings, grandparents and close friends
  • Impaired psychotherapy, low uptake of videoconference therapy

Sources: Baenas 2020; Branley-Bell & Talbot 2020; Castellini 2020; Fernández‐Aranda, Casas, Claes et al 2020; Graell 2020; Schlegl 2020a; Schlegl 2020b; 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; Vuillier et al 2021; Nisticò 2021; Zeiler 2021; Nutley 2021