This is a blog for anyone who is interested in learning about the impact of ARFID on daily life.
Why blog about ARFID?
Having a family member with this condition has impacted my family on many levels. Sharing my story with health professionals many times along the way, constantly explaining to family and friends about why my child won’t eat, and fighting for this to be recognised as something bigger than just ‘fussy eating’, has become part and parcel of our family life.
At the centre of it is a child who finds that apart from a small number of ‘safe’ foods, he just can’t eat anything else.
My partner and I first heard the term ‘ARFID’ after our son was discharged from a year’s worth of outpatient care at the Food and Eating Disorders clinic at Great Ormond Street Hospital in 2018. OJ had been treated there due to a refusal to eat solid food, and what we observed as severe anxiety at mealtimes and in ‘food situations’ such as family gatherings, playdates, baby groups, outings, picnics and visits to cafes. Click here for OJ’s story.
ARFID stands for Avoidant/Restrictive Food Intake Disorder, and was a term coined in 2013, when it first appeared in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5; American Psychiatric Association, 2013). It has also previously been known as Selective Eating Disorder. Find out more about ARFID here: further information
The ARFID Awareness UK website says that:
ARFID is characterised by a pattern of eating that avoids certain foods or food groups entirely and/or is restricted in quantity (eating small amounts). Avoidant and restrictive eating cannot be due to lack of available food, or cultural norms (e.g. someone who is fasting or chooses not to eat certain foods for religious or cultural reasons alone).
Unlike other restrictive eating disorders ARFID isn’t affected by a person’s beliefs about the size and shape of their body, and a person with ARFID doesn’t restrict their food intake for the specific purpose of losing weight. In addition, ARFID doesn’t feature some of the other behaviours that can be associated with anorexia, bulimia, or OSFED, such as over-exercising.
I decided to create this blog when I realised there were many others like us, struggling at home with a child or family member that won’t or can’t eat.
There is very little guidance or knowledge about how to treat ARFID, and therefore as parents we feel we have been largely left to fend for ourselves, dealing with a situation we feel is more than just ‘fussy eating’ but without any idea of the right way to go about it. Despite trying many strategies over the years (our own and those given to us as part of OJ’s treatment at GOSH) we have yet to see any lasting improvement in OJ’s eating behaviour. Like many others in our situation, the social implications as he gets older are what we are most concerned with, along with the worry about his long-term health and physical development.
My hope is that by sharing our story, we can help to raise awareness, connect with and support others, and find our way forward from a bewildering experience that has defined our son’s relationship with food, and profoundly impacted our family life for nearly a decade.