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ARFID: What is “normal” anyway?

I’m Mel, an Integrative Counsellor in private practice and I’ve been working with eating disorder charities for several years. I was pleased to see the theme for Eating Disorders Awareness Week this year was ARFID (Avoidant/Restrictive Food Intake Disorder), which isn’t talked about anywhere near enough. I have personally found very little literature or training in this for working with adults (there is a bit more for working with children). Throughout my time working with eating disorder charities, and through long-term therapy and my counselling training, I’ve been on a long journey of reflecting on my own relationship with my body and food. And it’s not over yet! So this blog contains some of my own personal reflections on my own experiences with food, as well as considering the social and cultural contexts of ARFID, and the intersection of neurodiversity.

 

What is ARFID?

ARFID - Avoidant/Restrictive Food Intake Disorder – is a lesser-known eating disorder, catageorized in the 5th edition of the DSM-5 (the Diagnostic and Statistical Manual of Mental Disorders). ARFID is described as an “eating or feeding disturbance” which may include sensory sensitivity, fear of aversive consequences of eating, or lack of interest in eating. This can manifest in various ways, such as avoiding certain food textures, colours, or smells, experiencing a lack of appetite, or having a limited range of acceptable or safe foods.

My personal experiences

 

I describe my own experiences usually as "disordered eating" as I've fleeted around different difficulties in my life but never been diagnosed with an eating disorder. I never considered there was even an issue, until I started learning more about eating disorders, and learnt about the influence of diet culture and weight stigma in my life. When I learnt about ARFID, I could definitely relate with some of my experiences of being fearful of foods.

 

I was fortunate enough to travel for quite a long time in my 20’s, but this was not so great on my guts. I had food poisoning numerous times and became anxious about what I could eat as almost everything seemed to make me feel nauseous, bloated and have a bad stomach. I saw various professionals - medical and holistic - many of whom seemed to want to tell me what not to eat. I did various elimination diets and nothing worked. I just got gradually more scared of what to eat. I even cut out tomatoes for a while, which for an avid pasta and pizza eater was really no good!

 

My poor stomach has taken the brunt of most things in my life, emotionally and physically, which I manage on an ongoing basis still though it is much better now. It took me many years to start building up what I could eat again. It didn’t start with challenging myself to eat more foods, it started with finding more routine and stability when I moved back to the UK. I started having counselling, doing yoga and building up my relationship with myself, and food. I also had a lot of diet culture stuff I was trying to unpack, which was an added complexity. I didn't hate my body anymore but I certainly didn't love it. I was starting to be a little kinder to it at least. 

 

I felt brave enough gradually to try new things, but it’s scary when you’ve had bad experiences with food and it’s made you ill. I wanted to have variation in my eating and to reduce worrying about food, and some of that meant challenging diet culture narratives I’d picked up growing up, and societal ideas about “healthy” eating. I aimed for more of an intuitive eating approach and tried to get more in touch with my body, hunger signals and focus on what my body needs and how it felt instead of external influences.

 

Like many people who have struggled with eating, I have foods and places I feel safer with, and I like to know what’s on the menu at places I eat beforehand. “Recovery” means different things to different people, there is no one-size-fits-all because everyone’s experiences are so nuanced and complex, but sometimes it just means managing a little better.

 

Norms and expectations

 

I feel way more at ease with food now, but I will never forget what the awful fear of eating feels like. I know what it's like to feel anxious about eating out, and eating at other people's houses. To be scared that there won't be anything for you to eat, and that people will judge you for being picky or difficult. To feel like you can’t eat like a normal person. It can be incredibly shaming to feel like the odd one out, that you're being too dramatic, and is easy to blame yourself for these things. This has a huge impact on your life; socially, at work, career choices etc. It can really hold you back.

 

As a counsellor now working with eating disorders and disordered eating, I feel my lived experiences are important and beneficial in this work. Some people with eating difficulties will have experienced things very differently, but I still have some insight and I understand the turmoil, frustration, shame and various other underlying feelings associated with eating disorders. The main thing I’d like to let people know is that your struggle is valid, it’s a tough way to live, it is definitely not your fault and you absolutely do deserve help and support.

 

Normal eating?

 

So what even is normal eating anyway and who makes the rules? Spoiler… “normal” eating doesn’t exist. Diet culture has a lot to answer for, but we also start learning about food from the moment we're born. Early childhood experiences and narratives around food can create templates which run through your whole life. We learn how to eat from others, which is heavily influenced by culture and society and “norms” can become ingrained. Some people, like myself, will learn that there are “good and bad foods” and that healthy equals being thin and fat is bad. As babies we cry and get fed, but then everything changes once we’re faced with a dinner table; there are rules and expectations. I am aware I’m speaking from the position of being a white British person, so only from one limited cultural perspective, but I was taught about how meals had to be “balanced” to be healthy and to eat 5-a-day and all the other generic stuff. Even in the past few years, I’ve been handed “how to eat” type leaflets from medical professionals that were literally from the 80’s. It’s just not realistic to have one “right” way of eating, our bodies are so different. It also assumes the “right” way is based on White Western approaches to eating, assuming this is the “normal” way. It is not. We all need to find our own normal and not feel ashamed for this.

 

Neurodiversity

 

We can’t talk about ARFID, or any other eating disorder, without talking about neurodiversity. I use this term here to refer to the natural differences in the way everybody thinks and processes information. Through my own practice I’ve learnt the importance of looking through a neurodiverse, and intersectional, lens. Even working with people who are neurotypical there are benefits to this, as everyone has different communication and learning preferences. With ARFID, there can be sensory sensitives in many people, meaning that different textures of food, mix of foods, and variance of foods can make life very tricky. Think about how much fruit and veg can vary in texture (and taste) from day to day! There is no consistency, therefore no safety, in those foods at all, but with some crackers or a packet of crisps, it’s the same each time.

 

For neurodivergent people (which in this sense I’m referring to autism and ADHD mainly), there can be a pressure to “mask” and try to “fit in”, which may mean added pressures and anxieties around eating “normally”. The idea that we have to help people fit in with what we perceive as a “norm” (which is often a position of privilege) is not acceptable, especially in the case of neurodivergent people and those with disabilities. The world needs to accommodate, not reinforce a “norm” which is inaccessible for many. This again can lead to self-blame and shame. The same is true for eating – the “healthy” and “right” way of eating is too limited to accommodate everyone, and to enforce this is potentially harmful to people.

 

For some people, the pressure, expectations and feelings of not being “normal”, and self-criticism and shame that come from this, are arguably the issue more than the food they don’t want to eat. The pressure from others, especially on children struggling to eat (who have little autonomy and choice) can exacerbate the situation, which is often due to understandable concern for their loved one but is underpinned by “norms” and expectations of what they think they “should” eat.

 

Acceptance

 

Many people with ARFID want help to be able to widen their food options, reduce anxiety around food and live an easier life, so I’m not suggesting that people just accept the limitations as that’s not going to be realistic. But I feel it can be helpful to start building self-acceptance and reducing critical thoughts as this will help recovery and healing. Putting in boundaries with others, and unlearning some narratives around food might be important too. Safety is such a big part of this, in the sense that food needs to feel safe to eat, but also places and people need to feel safe too. For people with ARFID seeking help, they may be nervous about seeing professionals in case they are forced to eat, or met with judgement or dismissal.

 

The main issue with ARFID is that it’s so different for everyone, so there are no specific ways to help. It would involve working on a case-by-case basis, in a person-centred way. It is important that the person feels they’re not being judged, but that they have control and can make choices for themselves.

There are currently no evidence-based treatment recommendations for ARFID but current treatment options in the NHS can involve Cognitive Behavioural Therapy (CBT), exposure therapy, or family therapy for young people, with nutritional support too. For many people, it may be difficult to get a diagnosis (or they may not feel safe to go to their GP in the first place) so they may opt to seek help privately.

I work in an Integrative way, with a person-centred foundation, meaning I incorporate different theories and approaches but I am collaborative and adaptable to suit clients’ needs. This is not a “how to work with ARFID” list but there are some approaches which might be helpful:

 

·      Exploring shame and other difficult emotions

·      Building autonomy and individuality

·      Exploring influences from childhood (the “shoulds” and “musts”) and cultural/societal influences

·      Exploring any experiences which may have influenced the development of ARFID (eg illness, choking, fear of vomiting)

·      Building confidence, resilience and how to put in boundaries

·      Using practical tools and experiments – only when the client is ready! Eg making a list of fear foods from most to least scary, if the client is ready and is keen to try some now foods this can be a good place to start to try some less scary options

·      Go at their pace and be realistic – there is no pressure to be able to eat all foods!

·      If you’re a professional or a family member/friend supporting someone with ARFID, consider reflecting on your own attitudes to food and bodies, diet culture, dominant narratives etc.

 

 

A wider understanding of ARFID in society is needed and more literature on this subject. I’m pleased ARFID is the theme for Eating Disorders Awareness Week this year, and I hope we can keep the conversation going.

 

You can read more blogs from Mel or find out more about her private practice on her website: www.melciavucco.com




 

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