ARFID - Avoidant Restrictive Food Intake Disorder Much More than a Fussy Eater

You may not have heard of ARFID, but most of us almost certainly know someone who is a fussy eater, right? Well, this is what my ARFID was thought to be for most of my young life, simply a fussy phase that a child would grow out of. I am now twenty-four years old, recently diagnosed with ARFID, and hoping to share my story to help other children, young people, parents, or adults of any age who may relate to this.

ARFID is an eating disorder that can be centred around several things:

• Textures and tastes of food meaning the whole sensory experience of food can be distressing. Having strong aversions to food goes far beyond not ‘liking’ something.

• Trauma experiences, choking, and food poisoning. Sometimes these can be the trigger to ARFID developing, sometimes they can be horrible fears that sufferers must live with day in and day out.

• Simply no interest in food, eating is a chore, sometimes even not feeling hunger the way others would.

Someone with ARFID could have all these symptoms, or just a few, and it could affect them greatly in day-to-day life and as they grow and develop with this disorder. An ARFID sufferer commonly has a ‘safe food’ list, literally meaning foods that feel safe to eat and won’t cause as much discomfort as others. This could revolve around avoiding food poisoning, avoiding fullness discomfort, or any number of reasons. It can be extremely hard to go beyond the safe list, meaning part of recovery is to expand the foods on the safe list slowly and surely, which can take years.

The problem with ARFID being associated with fussy eating habits is that people don’t take it seriously. “We’ll grow out of it” or “at least we’re eating something”, both phrases I have heard throughout my life. The thing is, I haven’t grown out of it, and the effects of eating a very limited diet can be seriously harmful to the body, including organ failure in the most extreme cases.

My Story; As a Young Child

It was evident that I had a problem with eating from the get-go. I refused to eat in the school canteen, and I would routinely hide food so I wouldn’t have to eat it. I was underweight for pretty much all of my childhood and through my teenage years, and I guess the difference between then and now is the understanding of what damage I could cause if I remained underweight. I began fainting when I was around nine, usually linked to times when I wasn’t eating very well, and this is something I still have to monitor now.

As a child, my behaviour was seen as normal for a while. Things like foods not touching, needing separate plates, being unable to share foods with others, and not liking most things presented to me. However, as I grew up, these became more obvious as an issue. People were quick to blame my parents, but my brother was the opposite of me and was brought up in the same environment. My mother tried to expand my diet, and honestly, those early foods are some of the only things I can eat today. She would also push me to eat fruits like apples, pears, bananas, and grapes, and I still eat these now. However, I have tried over the years to eat other fruits like oranges and berries, but I haven’t liked a single one.

My Story; Going to University

University was obviously going to be a big step for me. I had been treated at age fifteen for anorexia, but nothing changed (because this was a misdiagnosis, as I didn’t have anorexia). So obviously, my family had concerns about letting me move away and look after myself. After the treatment didn’t go very well, I decided that I was going to try and put on some of my missing weight. At this point in my life, I felt out of place, and everyone was worried about me, I was disheartened that I didn’t really take anything away from treatment but looking back now I know that I was being treated for something I didn’t have, and no one would tell me about ARFID until I was in my twenties.

I managed to put some weight on and come out of a dangerous area. However, this didn’t mean I ate a range of foods, and I would eat the same 2-3 meals a day. I was lucky in that I liked a small amount of fruit, a few calcium-based things, protein, and carbohydrates, so my diet wasn’t too unbalanced, and this got me to a healthier place where I felt able to go to university.

Balanced diets can be something difficult for people with ARFID. Getting an adequate protein intake can be hard because of the fear of food poisoning from meat, texture, or taste. Fruits can be difficult because they are very unusual in texture and often don’t feel the same from one day to the next. ARFID is sometimes associated with a “beige” diet, so carbohydrates can feel like the safest foods of all, usually plain and filling.

Anyway, I moved to University in Cardiff, only an hour or so away from my home. It was a big decision whether to live alone or in a shared flat because on the one hand, sharing a kitchen would be a challenge, but on the other, I would potentially be lonely and find it difficult to meet people. I ended up moving into an eight-person flat in my first year, and honestly, I think it was a very good decision.

It challenged me a lot. The kitchen could be messy, and sometimes people weren’t thoughtful, but overall, my flatmates understood my problems and helped me out. I should explain that a little, because you’re probably wondering why other people would affect my eating habits. My ARFID extends to other areas beyond food; a messy kitchen can feel overwhelming and contaminated, with messy plates, fridge smells, and sharing equipment making me feel queasy before I have even had the chance to put my food in the oven.

I should also say I absolutely do not expect people to have to tiptoe around me and my eating disorder, and simply cleaning up after yourself and being a normal considerate flatmate is enough. Throughout my three years at Uni, I had amazing friends who would cook me my favourite meal if I was feeling too low to do it myself, and they would know exactly what to do if I was to faint. I even have one friend who said she knew I was enjoying my food when I cut it into tiny pieces to make it last longer, so they really did understand and support me.

So yes, university was hard, but it was also a great experience for me and developed my life skills enormously. It challenged me to work on aspects of my eating disorder, which then led me to seek treatment again for the first time since I was fifteen.

My Story; Seeking Treatment

It was quite difficult knowing where to start trying to seek treatment for an eating disorder that didn’t have a name. I started at my GP and was referred to an eating disorder service. Months went by but finally, I was given an appointment and asked to fill out some questionnaires.

I started filling these out, realising as I went that they were simply asking the wrong questions. No, I didn’t binge, or intentionally lose weight. But of course, there was no box for major sensory issues, fears around food, and a hugely limited diet. At this point, I had been eating 3 meals a day for a couple of years and was pretty much at a healthy weight, so then I had the trouble of my BMI not being low enough for treatment. A silly rule for an eating disorder that can sometimes mean a person eats nothing but carbs and ‘junk’ food, malnutrition can’t be detected by a BMI measurement.

I broke down to a doctor and explained in as much detail as I could all the problems I have had over the years and continue to have. At this point, I was becoming an adult, I wasn’t just a child anymore that could be looked after. I needed independence and help to get there. ARFID not only affected my health, physically and mentally, but also my social life, relationships, holidays, and every aspect of my life.

Eventually, I was referred to a therapist, who told me I had ARFID, and we did 20 sessions of CBT. In these sessions, I tried foods, and we explored reasons why I feel the way I do. It helped me a lot, and while I am not cured, I do have more of an understanding of my condition and how to manage things.

So, while I am not completely recovered from ARFID, I consider myself to have a much better grasp on it than before. Some bits improve, others worsen, it’s just about making sure I am feeding myself and working on expanding my diet when I feel up to it. I live by myself now, manage every aspect of my kitchen and meals, and feel much more independent than before. I talk about ARFID now because I don’t want others to have to wait twenty years for a diagnosis. This condition needs more recognition and more available treatment, and I’m pushing for all of that to happen.