"ARFID and me" - Chloe's story

Imagine everyone around you has a diet that consists entirely of paper. Friends and colleagues eagerly discuss their favourite types of paper to eat and their favourite ways of cooking paper. You can’t get through the day without someone asking you what kind of paper you’ll be eating for dinner tonight. Restaurant menus are filled with hundreds of different kinds of paper for you to try. Enjoying eating a wide variety of paper is seen as a moral accomplishment. Suggesting that you don’t want to eat paper is met with confusion, disbelief, pity and sometimes anger. Welcome to the life of someone suffering from ARFID.

What Is ARFID?

ARFID stands for Avoidant/Restrictive Food Intake Disorder. People with ARFID restrict the amount of food they eat, the variety of different types of food they eat, or both. Unlike with most other eating disorders, people with ARFID don’t restrict their food because of concerns about their weight and body image. The reason for restrictions vary between people and can be pretty complex, but some of the most common issues people with ARFID have with food are sensory issues (being unable to tolerate certain textures, smells or tastes), anxiety (about allergic reactions or becoming physically unwell from eating) or severe discomfort during the physical process of eating.

The foods that a person with ARFID can tolerate are commonly referred to as “safe foods”. Each person with ARFID has different safe foods. Some people will be able to introduce new safe foods into their diet, often with support from friends and family or a therapist. Some people find that foods which used to be safe are no longer safe. Some people find that their safe foods vary from day-to-day, for others they’re fixed for their whole life.

Panic At The Dinner Table

The way ARFID develops also varies from person to person. My issues with ARFID have lasted for as long as I can remember - I’ve heard many stories of my parents trying to introduce new ingredients into my baby food, only for me to projectile vomit everywhere. Even before I understood what food was, my body was reacting to it.

That brings me onto my next point - people with ARFID are not “fussy eaters”. Most of us have very real reactions to “unsafe” foods, whether that’s gagging/choking, vomiting, or experiencing extreme anxiety which makes it impossible to eat. A common thing people with ARFID will have heard over and over again (especially as children) from friends’ parents, teachers on school trips, and family members who aren’t aware of their struggles, is: “Back in my day we didn’t have fussy eaters. You either ate what you were given or you didn’t eat”. The people who say things like this think that by only giving someone one food option, you will force them to eat it. This tactic does sometimes work with people who don’t have eating disorders, and simply “don’t like” what they’re having for dinner. It doesn’t work with ARFID. Given the choice of an unsafe food or nothing, people with ARFID will choose nothing.

The thought of any kind of formal event makes me feel completely terrified. Why? Because it will inevitably involve a sit-down dinner, where a very expensive meal is put in front of me and dozens of people sit around me, eating the food and commenting on how delicious it is. I know if I put the food in my mouth I will start gagging until I spit it out again. Although I know this is my body’s reaction to certain foods and I can’t control it, it is also incredibly bad table manners. My other option is to not eat it, which invites questions of what’s wrong with the food, if I’m ill, if I’d like something else (which if I answer “yes”, will result in another meal being prepared in order to start the whole process again).

It’s a similar story with travelling. I was very lucky to attend a school that offered a lot of residential trips abroad. My main memories from all of these trips are sitting in a hostel cafeteria with a plate of untouched food in front of me. Teachers getting angry with me, then concerned that I was trying to starve myself to lose weight. Being asked over and over again if I had an eating disorder and saying no, because both me and the person asking me thought that all eating disorders were about wanting to be as skinny as possible, and that wasn’t the case. I felt so abnormal, I was starving, literally starving, and all this food was put in front of me and I just couldn’t eat it.

University: Pizza With A Side Of Isolation

I was at university for a total of five years. I moved out of my parents’ house, went to study 500 miles away from where I grew up, had my first proper relationship, changed career plans, made some incredibly close friends; it was such a huge part of my life. But what was even bigger was the constant worry about food.

During freshers’ week, I went along to try out a lot of sports clubs. Pretty much every club would have a training session and then everyone would go to the students’ union and get free pizza. I went along to a few different sessions, and explained that I didn’t eat pizza but was more than happy to join in with the social aspect. Initially I was asked why. When I said something about having issues with cheese, a vegan cheese pizza was brought out. I panicked and left and felt like all these people were too close to finding out my shameful secret.

While everyone around me bonded over drunken kebabs and hungover brunches, I struggled to become close to people whilst trying desperately to never eat in front of them or discuss food with them, in case they found out about my difficult relationship with food. I did have a few very close friends who partially understood, and at one point had a girlfriend who understood that any romantic dinner dates had to happen somewhere that would serve me a bowl of plain chips. But these tended to be the exception to the rule.

Wishes For The Future

My wish for the future is that there will be more knowledge and understanding of ARFID. I hope in the future I'll be able to eat lunch with my work colleagues without being interrogated about why I eat the same thing every day, and that there will be adequate NHS support for people with ARFID. I hope more people become aware of ARFID and it becomes something you can mention to people without having to then explain exactly what it is. I’m hoping that I’m making a very small contribution to that process by writing this blog.

-Contributed by Chloe

If you've been affected by any of the issues raised in this story, or are concerned for yourself or a loved one, you can find support and guidance on the help pages of our website.