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#EDAW2024: Avoidant/Restrictive Food Intake Disorder (ARFID), Removing Judgement – Empathy and Compassion

Much of what we’ve heard from people who experience Avoidant/Restrictive Food Intake Disorder (ARFID) reflects their sense of feeling judged. Today, we share some quotes which focus on empathy and compassion. Below are lived experience, carer, clinical and research perspectives

  • “I find it frustrating not to be able to provide more assistance to individuals and families coping with ARFID. Unfortunately, the development, testing and dissemination of new treatments requires a lot of time and research funding. Nevertheless, I am optimistic that the increased awareness of ARFID in recent years will pave the way for significant improvements in the lives of those affected in the coming years.” –Lisa Dinkler, PhD. Researcher, Karolinska Institutet
  • ”As a parent, you want the best for your child, watch them grow and develop. When your child stops eating because of ARFID, it’s devastating for the child and family. What makes an extremely difficult situation worse, are the judgements and misconceptions that others have about your child and you. There is little to no understanding or awareness of ARFID. When my daughter first became unwell with ARFID, medical professionals did not listen, said we should make food fun and that kids can go weeks without eating. Other people gave their “advice” such as “she’s just fussy”, “she’ll eat when she’s hungry enough”, “she’s spoilt, don’t give into her”. Eventually, my child ended up in hospital for months because we could not get the support that we needed at the right time. ARFID is not a fussy child, it’s a life-threatening eating disorder that needs to be taken very seriously.” – Parent of a person with ARFID
  • ”My journey as a parent of a young adult with ARFID has been going on for 12 years. Reflecting on this time I have felt intense periods of judgement from health professionals, extended family, schools and friends. As a mother I have internalised this as blame, criticism and failure. Part of the healing process for me has been self-compassion and forgiveness. I know I have contributed to the problem partly through my own lack of understanding about ARFID but I also know I am not to blame. Supporting a child with ARFID requires endless patience but also empathy. Letting my daughter guide me (with compassionate and empathic professional support – not easy to find!) to create solutions together has been pivotal to us living with ARFID. There are many battles to fight so be kind to yourself!” – Kathryn McGuigan, PhD. Mother, Researcher and Lecturer
  • Eating is a critical part of being human and ARFID, a condition that interferes with eating, is often a family and community affair. We need to eat to sustain ourselves and for children, eating healthy foods is essential for growth into adulthood. Eating is also a means of connection for families, friends and communities. When a child has ARFID, everyone around the child is affected. Parents often blame themselves and feel misunderstood  (sometimes by those they rely on for care including primary care clinicians, teachers, therapists, etc.); feel like they are walking on egg shells to please their child; are exhausted from trying to find the specific food their child is willing to eat; worry that their child won’t grow or worse, be permanently scarred by malnutrition; confused by the origins of watching their child transform into a ‘hangry’ combative person; struggle financially to provide the right supplemental formula or vitamin for their child;  and feel scared and lost on how to get the right care for their child. The anxiety and stress radiates outward to siblings, family members and friends: meal time transforms from a time for “breaking bread and bonding” to often a challenging ordeal with limited food choices to accommodate the child with ARFID, isolation and disapproving critiques from others and a sense of disequilibrium among family members. Understanding ARFID means understanding that no one is at fault and the key to success is supporting the child, the parents, the family and the community as the child gains the skills and confidence to address ARFID one small step at a time.” – Elana Bern MD, MPH, Tracy Richmond MD, MPH & Boston Children’s Hospital ARFID Team
  • Compassion for me with ARFID is validation. It’s heartbreaking when loved ones,friends and family either ignore or minimise the lived experience of ARFID. People can ask questions and inform themselves on ARFID.To be heard ,to be believed and understood is so meaningful. For example family and friend can understand about safe foods. ARFID is extremely stressful in part also because it is not well known as an Eating Disorder. As ARFID often affects children ,someone can show empathy by understanding the difficulty for a parent to not be able to fulfil a child’s basic need of taking sufficient food. Compassion is asking the person or family friend ‘What can i do to help’.It’s also bring mindful to stop saying unhelpful comments like ‘ A child will eat when hungry’ od ‘They will be grand’. Flexibility and working collabiratively with people affected by ARFID is the action points of really being present and supporive of the life consequences and challenges of living with ARFID. – Parent of a person with ARFID