All I knew from the age of 18 months was that food was scary and anything out of my ‘norm’ would make me cry, panic and violently gag. I didn’t have the words to articulate the sheer anxiety I faced day by day. I was instead branded “fussy”, “spoiled” and that I should “just try” and I would eventually “grow out of it”. If it were that simple, I’d have tried by now – right? ARFID (formerly known as SED) was not a term I had heard until I was into my teens; by that point, my eating habits were well ingrained.
What is ARFID?
What is ARFID, might you ask? Avoidant Restrictive Food Intake Disorder was only officially recognised in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) when published in 2013; but it had been controlling my life for many years before that.
Unlike typical eating disorders, it is characterised by a distinct lack of interest in food and eating, sensory-based avoidance, and / or the concern about the aversive effects of eating. Sufferers typically have fewer than 15 ‘safe-foods’ (that’s individual items – not meals!) and it is common for sufferers to stick to beige foods. This can also mean avoiding entire food groups altogether.
For me, it meant that I didn’t eat any meat, vegetables, nor barely any fruit. Even staple foods which a kid typically loves were my nemesis. I also feared sauces, nothing on my plate could touch, I couldn’t cope with complex foods which had a mixture of ingredients and textures. Even now I struggle not to eat one food item at a time, in a specific order. Furthermore, safe-foods can even be brand-specific. If there wasn’t my usual brand available or it was too expensive, and my mum had tried to sneak an alternative brand, I would know instantly and react to this the same way that I would a new food. I essentially ate the same food day in, day out, for YEARS.
I’d describe my reaction towards trying anything other than my safe foods as a phobic response. My heart would be pounding, my whole body shaking, I felt physically sick – and this was before even eating. Even if I eventually mustered up the courage to put the food into my mouth, before I barely had the chance to chew, I would violently gag and consequently spit the food out. My body physically rejected anything other than what my mind deemed ‘safe’. This is the part people couldn’t seem to grasp, be it peers or even healthcare professionals, the sheer anxiety attached to this. If something made you react like that, would you want to do it again? Would you want to face that every day, thrice?
When living with ARFID, eating is a chore – it’s a dull, repetitive cycle and every day is exhausting. Finally receiving a diagnosis in my teens, yet still with no help or guidance, this empowered me. All the questions and all the noise stopped when I said the words “I have an eating disorder”. There is so much stigma around this term that people fear it, you can see them physically recoil. Although I appreciate my struggles are greatly different from those with typical EDs, it wasn’t an incorrect statement. It was a way to feel validated because it shut them up.
Eating disorders don’t just affect mealtimes – they affect everything. Eating is part of everything, it’s everywhere. Countless memories I have of parties or visiting friends’ houses or school trips and the inevitable meltdown that would ensue. It would soon become quite evident that I was not eating. It was easier to simply not eat at all than to make everyone feel uncomfortable by explaining my eating habits or by trying food and them having to witness the aftermath when I did. I was made to feel so rude and ungrateful – it was so overwhelming.
Bizarrely for a child, the day of the year I dreaded the most was Christmas Day. For me, it was that it was the one day of the year my family would actually eat at the same time around the dining table together. There was not a single thing I would eat of a Christmas dinner. The pressure of feeling everyone was watching me was the most anxiety-wrenching thing. I desperately wanted to be ‘normal’ and be part of the tradition and would try something each year which without fail, always ended in tears.
The summer I sat my GCSE exams was probably the lowest point in my life. I became ever increasingly aware that everything I was putting in my body was of virtually no nutritional value. I felt like I could feel the ‘badness’ going in me every time I ate. My mental health had plummeted. I was exhausted. Years of trying and hoping, no one to support or understand me – I had got nowhere. So I stopped eating.
I started to lie about how much I had eaten; I survived off snacks and at most one meal a day – which I had to make myself and be left alone. This was going down a much darker route which I didn’t want to go down – but eating brought me nothing but misery.
Desperate, I went to the GP again. I vividly recall crying my eyes out to him only to hear “I can’t give you a magic pill to cure you overnight”. As nice as that would have been, I just wanted someone to understand, make my everyday struggles feel validated. I just remember laying on my bed balling my eyes out thinking “this is it, I’m never going to feel any better. I can’t carry on like this”.
Given that there is still no standardised treatment for ARFID, that I had received little understanding over the years, and long NHS waiting lists seemed like a road to nowhere; I eventually opted for an ‘alternative’ therapy. This was two years on when I had seen a story of someone in my local news with a scarily similar sounding story to my own, who had been somehow ‘cured’. Hearing of someone who had lived through the same struggles, and had found some hope, was a comfort I could not describe – for the first time in my life, I wasn’t alone.
I opted to go down exactly the same route. Part of me was sceptical but a bigger part of me was ready to try anything to achieve the ‘normality’ that I had always yearned for. This one-time two-hour session was supposed to be my “cure”. I initially noticed some positive changes, the gagging seemingly had disappeared.
At this point I was overwhelmed with joy, and wanted to spread the word. Growing up, I always said that should I ever get any better, I wanted to spread awareness and help people like me. I wanted to do exactly what that person in the news has done for me, and give someone else out there a glimmer of hope. I was pushed by my therapist to also take my story to the media. What I actually thought would be a source of comfort for others actually only ended up being toxic for me and sent out an unrealistic message of ‘instant quick fix’ to them. If I knew then what I know now, through my education and my career, I would have done a lot more research.
The media did what the media does best and exacerbated everything by fabricating a ‘freaky eater’ narrative, which is neither informative, nor helpful. It focuses heavily on the dietary specifics as opposed to the debilitating characteristics of the condition itself. They portray this as an ‘addiction’ and as a result create even more of stigma. How could I be addicted to said food when my ED is characterised by a distinct lack of interest in eating?
After this ongoing battle, I learned that I hadn’t been helped quite as much as I’d first thought. The fear, aversion, sensory issues, peculiar habits and a need to be in control of exactly what I was eating were still there. I learned that something as complex and multifaceted as an eating disorder cannot simply be “cured” in one, two-hour long session – as ideal as that would be. Instead, I needed the tools and space to be able to rebuild and adapt to a life without an ED, as the habits of which are ingrained over a lifetime. It shapes your life; it becomes a comfort. It can be so hard to learn what life is like without it because I literally never knew any differently – it felt part of my personality.
I am writing largely in the past tense, but this does not mean my troubles have gone away. My main problem now is after years of fighting to prove that I am not just a “fussy eater”, recovery makes me feel that the more I eat, the more I adhere to this label and people will not believe what I went through. Those social aspects are still largely there, and I will still avoid talking about the specifics of what I eat because I still feel an element of embarrassment over the content of my diet.
It is, however, not all doom and gloom. I am in a position now where I have lived this recovery to some extent, know what my triggers are and what I need when things are difficult. I finally feel ready to tell the world, my story but this time, in my OWN words. Although I’m nowhere near my end goal or a ‘normal’ eater, that is something that I have accepted. I am being a lot kinder to myself and recognising how far I have come to still be here now. I’ve lived independently for nearly 5 years, finally been able to go (and live) abroad and I have eaten things I could have never imagined.
This may only be a snapshot of my life but I am writing this now for you and for anyone out there lost and unheard. I made a promise to myself to be the voice for those who are not being listened to. I will use my journey to not stop speaking out until there is a standardised therapy, until there is adequate research, until recovery no longer feels like a fairy-tale. I am your voice.
At HOPELINEUK, we recognise that eating disorders are complex conditions that are unique to each individual, but we are here to support individuals to keep safe from their thoughts of suicide.
If you’re aged 35 or under, and experiencing thoughts of suicide, call HOPELINEUK on 0800 068 4141, text 07860 039 967 or email firstname.lastname@example.org Our suicide prevention advisers are available from 9am to midnight, every day of the year. We are also here for anybody concerned for a young person who might be experiencing thoughts of suicide.