17 Jan 2024

Let’s Talk about ARFID


Avoidant/Restrictive Food Intake Disorder (ARFID) is distinct from other eating disorders.

ARFID is characterised by food avoidance or restriction due to low appetite/food apathy, sensory sensitivity or fear of undesired consequences such as choking.

People with ARFID usually do not have weight and body image concerns that are often associated with other eating disorders like Anorexia Nervosa, but it is also possible for people to have a number of eating disorder diagnoses and therefore complex, differing symptoms and concerns.

Given that ARFID was only listed as a diagnosable eating disorder in the Diagnostic and Statistical Manual of Mental Disorders – fifth edition (DSM-5) in 2013, there is a lack of awareness and understanding about this illness.

ARFID is more than just ‘picky eating’ – it is a serious eating disorder with potentially damaging health consequences, such as a lack of growth, weight loss, malnutrition and psychosocial impairment. ARFID can also impact anyone, of any age.

In this blog post, we spoke to four people who have experienced ARFID to learn more about the challenges of this eating disorder and share advice for others currently impacted or those caring for a loved one.

Common misconceptions about ARFID

Butterfly Collective members overwhelmingly wanted the public to know that ARFID was more complex than the misconception that ARFID meant a person was a ‘picky’ or ‘fussy’ eater.

“AFRID can easily be affecting someone their entire lives and people just think they are fussy eaters. AFRID can be seen as someone eating healthy, when in fact it is the opposite, as the extreme rules and anxiety around food consumes their decision making.” – Sabrina, she/her

“I would also like more people to know that ARFID is not just ‘picky eating’, but involves complexities around food selection, motivation, sensory profiles, and concerns about eating and digestion” – Rosiel, they/them

ARFID can co-occur with other health conditions and mental ill health

All four people with lived experience shared that their experiences with ARFID coincided with other co-occurring conditions.

They discussed how ARFID often co-existed with other eating disorder diagnoses and three people shared that they had received a co-occurring diagnosis of Anorexia Nervosa.

One person shared that living with ARFID led to Binge Eating behaviours, and others described how ARFID co-occurred with anxiety, depression, trauma, and neurodivergence, such as autism and ADHD.

“I have always prioritised foods according to their sensory profile, but also experience body dysmorphia and cognitions consistent with anorexia nervosa, as well as food aversions and low motivation consistent with ARFID” (Rosiel, they/them).

While anxiety around food contributed to ARFID, the impacts of ARFID also compounded the anxiety experienced. For one individual, extreme anxiety around food led to a fixation on food being viewed as ‘good’ or ‘bad’, while another shared that experiencing gastroparesis from a long-term eating disorder created greater anxiety around food, and therefore aversion to certain foods.

“The combination of anorexia, ARFID and depression was incredibly isolating and often meant eating meals separately, extreme anxiety about what I was going to eat next and researching menus in depth before going out” (Sabrina, she/her).

Sensory sensitivity and interoceptive differences tied to autism can also intersect with experiences of ARFID with the narrowing and restriction of certain foods.

“My experience of ARFID is that it’s deeply inter-related with complex experiences of embodiment, sensory sensitivity and differences, and interoceptive differences. My autism also means I have eaten the same narrow range of foods for years, as it feels overwhelming and chaotic to shift my routine” (Rosiel, they/them).

Individuals expressed that living with ARFID over a long period contributed to negative physical and psychological impacts, such as the development of Osteoporosis from narrowing food.

Barriers in accessing care and treatment

People with lived experience of ARFID shared that one of the barriers experienced in accessing treatment and care for their eating disorder was a lack of knowledge and understanding of ARFID by health professionals.

When accessing support, one person shared how their psychologist placed greater emphasis on weight and their diagnosis of Anorexia, and therefore a focus on ARFID during treatment was missed.

“There was minimal information anywhere about it (ARFID), and the first psychologist I saw never addressed it- they were just concerned with the anorexia and my weight… The psychology was there to address my eating disorder recovery and even then I didn’t feel like ARFID was specifically treated” – Sabrina

The cost of accessing support was also highlighted as a barrier to receiving support for ARFID. One person shared that a lack of cultural understanding also had an impact on the experience of treatment for ARFID.

Encouragement and advice for those experiencing ARFID or caring for someone experiencing ARFID

One individual highlighted the importance of challenging the thoughts that can stem from ARFID around food being good and bad and encouraged others to reason outside of black-and-white thinking.

“Every time you challenge the food rules and question your food anxiety, you are one step closer to not having your life ruled by what fuels your body. ARFID is not your friend, it cannot make you happy – ARFID is an eating disorder. Life is not black or white, it is beautifully grey” -Sabrina.

Another shared that those experiencing ARFID should seek support through connecting with others with lived experience of ARFID alongside professional support.

“It can be helpful to feel connected to other people with lived and living experience, and to learn some management strategies to try that might also work for you!” -Rosiel

Have you experienced ARFID? Join the Butterfly Collective to share your lived experience insights

While these important insights provided by Butterfly Collective members can increase awareness and understanding of ARFID, the small sample size might have affected the findings, and therefore these experiences of ARFID cannot be broadly assumed to be experienced by others living with ARFID.

You can help us represent more diverse experiences by joining the Butterfly Collective, our Lived Experience Network designed to provide people with lived experience of eating disorders and body image concerns the opportunity to help guide Butterfly’s work.

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Get support

If you or someone you know may be experiencing an eating disorder such as ARFID, it is never advised to ‘watch and wait’. Accessing support and treatment is key, and early intervention can help reduce the illness’ severity and duration.


Related tags: anorexia ARFID autism autism and eating disorders Avoidant/Restrictive Food Intake Disorder Avoidant/Restrictive Food Intake Disorder (ARFID) Butterfly Collective dsm-5 Lived Experience