Everything started in 2016 as I was coming to the end of my first year at university.
One of my housemates very thoughtfully decided to make me dinner, preparing roast chicken with all the trimmings. Waking up the next day, I felt sicker than I ever had before and booked an appointment with my doctor who informed me that I had a severe bout of food poisoning, likely caused by the previous night’s chicken being undercooked.
The symptoms of food poisoning usually last a few days, but mine didn’t seem to go away. Weeks went by with me rarely having an appetite and, when I did, I wouldn’t be able to retain the food in my body. In between food consumption, I had constant and severe abdominal pain that made it difficult to sleep and walk. Upon taking blood, stool and urine samples at the doctors’, I was informed that I had awoken genetic lactose-intolerance (that I previously was unaware of) and was advised to temporarily restrict my diet and introduce new foods daily just to make sure I hadn’t awoken any other intolerances. [Until mentioned again, what follows is how I perceived events to unfold at the time, as opposed to what I eventually found out was the truth.]
With my new diet prescribed to me, I began attempting to introduce new foods, but in most cases was met with symptoms just like those I had experienced with that initial food poisoning. Three months of brutal trials had passed, and I was then left with a huge list of intolerances. This was put down to a new make-up of my digestive system and the bacteria that had repopulated it.
Coming to terms that my life wouldn’t be the same again was tough, but I tried to remain strong. The next four years saw me degrade physically as the impact of this diet took its toll on my body, but far greater was the mental impact. Especially continuing through the rest of university, I felt so isolated when friends would meet for pizza evenings and I would have to bring my own food from home, and I would fear being offered food at someone else’s house as I would have to turn it down. I couldn't leave the house without having to think about when and what I would eat, and dining in restaurants and cafés was impossible. Everyone I encountered was so understanding of my condition (though admitting they’d never encountered anyone with intolerances quite as severe and extensive as mine before) and would offer to be accommodating, however I would always turn them down as I ‘knew’ the food they’d prepare would make me ill.
The inability to live life normally is very impactful to the mind, and I would often think ‘why me?’ I grew extremely bitter, witnessing people regularly taking drugs or drinking excessive amounts of alcohol, for example, but having no physical impact to their bodies, meanwhile I wasn’t doing any of those things and had a body that was completely torn up. At my lowest point, I even felt unjustifiably angry at people close to me for consuming foods and drinks that I couldn’t, which makes me feel horrible in retrospect. I saw different doctors and they were all unsure of why these intolerances weren’t going away or what to suggest. I grew so weary of having to explain my condition to people that I eventually just avoided any situation where food would be involved. My life had become defined by my inability to eat normally, and it was at this point that I learned the truth and my life took a dramatic turn for the better.
One evening in 2021, after finishing a dinner that was likely a plain omelette and rice, I was watching a television show that featured a character with an eating disorder. Moved by the character’s story, I decided to research more about eating disorders online which is where I came across the Beat website.
Like a huge proportion of people, I unfortunately only knew ‘eating disorders’ in the forms of Anorexia, Bulimia and Binge Eating Disorder, not knowing that there were far more that covered many different issues surrounding food consumption. The lack of knowledge around these other conditions must be widespread, considering that not a single person - friends, strangers, or doctors -who I had engaged with over the past five years had even considered an eating disorder as the cause of my condition.
ARFID comes in different forms, but I quickly discovered that in my case suffering ‘a distressing experience with food’ had caused me to ‘develop feelings of fear around food’ and resulted in me restricting my food intake to what I regarded as ‘safe foods.’ As I read through Beat’s detailed information about the condition, the pieces quickly fell into place, and I felt hope that maybe there was an end to this awful condition. It had taken years to come to terms that my life was going to be defined around not being able to eat food, but now there was hope that could change.
I reached out to the necessary people to confirm my own diagnosis, but honestly the confidence I gained from learning that this was something I could overcome was what I needed to start battling my condition. The speed at which I began recovering was amazing, slowly trialling foods one-by-one that I had been lacking. Nothing tastes better than eating one of your favourite dishes after five years without it, and the thought you’d never experience it again. Within six months, I had regained my ability to eat almost all foods again, and my life changed dramatically. Suddenly I was eating in restaurants again, the fear of visiting someone else’s house was drifting away, and I revelled in finally being able to join in the group cheer when someone suggests ordering pizzas!
Obviously, it hasn’t all been entirely easy. After the joy of discovering I was getting better, I then suffered a sickening feeling that if only I had been diagnosed sooner, I could have been cured and not ‘wasted’ five years of my life living in pain. This feeling returns to me regularly, but I keep reminding myself to look positively on what I have right now instead of regretting what I didn’t have in the past. I have also struggled to talk about my eating disorder openly, and at the time of writing I have only told one close friend. I know people will be completely open and understanding, but I have an inherent fear that people will think I have been pretending to have intolerances all these years or was trying to cover-up 'fussy eating.’
But with every new person I tell I hope my confidence will grow. My whole experience makes me long for a greater awareness of, not only ARFID, but all the different types of eating disorders. Knowing that the past five years of my life could have felt more ‘normal’ if I had been diagnosed sooner.
Contributed by George
Our supporter Chloe shares her experience of living with ARFID, and her hopes for better understanding of the eating disorder
Supporting someone with ARFID? Let Programme Manager Lucy tell you about our support service, Endeavour.