ARFID – the little-known eating disorder

ARFID is still a relatively little-known term. Although many of us have heard of the acronym, which stands for Avoidant/Restrictive Food Intake Disorder, beyond the basic understanding of it being an eating disorder, we generally don’t know much more than that. Yet ARFID can be distressing, debilitating, and even dangerous.

Eating disorder charity, Beat, created a 2024 #WeAreNotBeingFussy campaign focusing on ARFID, and published findings of ‘estimates varying widely (between 0.3%-17.9%) across different studies’ of people with ARFID. However, although ARFID treatment is not yet covered in NICE eating disorder guidelines, it needs to be taken seriously.

ARFID can lead to malnutrition; affect physical health, emotional wellbeing (including people avoiding social situations), and energy levels; delay puberty; and restrict growth (height, in particular). It often co-exists with autism, ADHD, anxiety disorders, and an array of medical conditions.

What is ARFID?

ARFID is a diagnostic label that first appeared in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, in 2013. Although weight loss can and often does come into play, this is not always the case.

ARFID is an umbrella term, and the three common reasons for developing the condition are due to:

• Sensory issues which could include taste and smell, as well as appearance and colour, texture and temperature.
• Anxiety around food and eating which could be related to past experiences of choking or vomiting or severe tummy aches, but may be more complex and difficult to verbalise.
• Poor appetite and low interest in food, and/or not recognising hungry feelings (low interoceptive awareness).

These reasons can occur independently or in combination.

What ARFID is not

It is crucial to understand that ARFID is not ‘picky eating’. Neither is it an attempt to seek attention. These views are harmful, and only add to stigma and shame, and increase anxiety.

Unlike anorexia and bulimia, people with ARFID do not restrict and/or avoid eating due to body image.

Example presentation

In everyday terms, how might ARFID present? The use of the term ‘might’ is important, because people display ARFID symptoms in a variety of ways.

This brief example of a young person we’ll call Joe shows some of their specific dietary difficulties.

Joe describes not being able to eat foods such as raspberries ‘because they are not similar enough’. This would explain why pre-packed foods, identical products such as Ritz biscuits, or mini Babybels, or a particular brand and flavour of pizza, are foods which do feel manageable. They are exactly predictable, thus reducing anxiety.

Joe understands – cognitively – that they must eat. However, this knowledge can add pressure, thus adding to their anxiety. When they feel more anxious, the struggle to eat becomes greater, and the vicious circle continues.

How to help

Currently, the majority of NHS eating disorder services do not accept patients with ARFID. This lack of professional support is concerning, and it sadly highlights a lack of research and knowledge around ARFID treatment. I have heard medical professionals in the field of eating disorders state that treatment methods for bulimia or anorexia would do more harm than good for people with ARFID.

Psychological support is crucial, and if the family or support network can understand what ARFID is (and isn’t), then this can be fundamental to successful ARFID management.

Practical tips for living with ARFID

There are a number of practical steps which can be put in place to support yourself or somebody with ARFID. You may have already adopted some of these strategies, naturally.

• Develop a list of ‘safe foods’. Joe’s list currently includes a specific brand of margherita pizza, spaghetti carbonara, Heinz tomato soup, and, thankfully, pomegranate seeds and raw pepper (red only!), less thankfully (but we all need a few treats!), Skittles and chocolate muffins. This is your go-to list when you’re feeling stuck.
• Food chaining is a process of introducing new foods very gradually, the aim being to increase ‘safe foods’, and widen nutritional choices, through ‘chaining’ a similar food onto a ‘safe food’. It is a delicate and continuous balance. If the difference is too great from the ‘normal’ food, this could mean rejection of the safe food.
• Reduce pressure and forget social norms. Joe finds it helpful to do something else while eating, even if the ‘doing’ is watching their favourite TV show, as a form of distraction.
• Use nutritional supplements if possible. Depending on texture and taste, juices, soups or smoothies may or may not be an option. The same applies to vitamin pills (even these can be complex, depending on whether they have a smooth-coated shell or a ‘too chalky’ texture, for example).
• Do seek help from a GP. As with any professional, some will have a greater understanding than others, so do persevere if you are not taken seriously enough to begin with.

Empathy and flexibility are key. If you are supporting somebody with ARFID, as well as showing them understanding and patience, practise self-compassion and self-care, too. As there is still so little general knowledge about ARFID, people may give well-meaning but unhelpful advice. In an ideal world, we might all be eating a gut-friendly, nutrition-rich rainbow of foods, but this is unlikely to be realistic regarding ARFID. Simply keeping fed, can be challenging enough.   

Remember the struggle is real, and there is help and support out there. A good starting place for support groups and educational resources – for both people with ARFID, and those caring for them – is Beat.

Disclaimer: I have no specialist training in either ARFID or other eating disorders, and although I can offer emotional support and a good understanding of ARFID, and you are welcome to contact me, I would also recommend seeking specialist support.