For National Eating Disorders Awareness Week we have the privilege of sharing Macy's story.
So this is my story...or should I say real life
Imagine everyone around you has a diet that consists entirely of cardboard.
Friends eagerly discuss their favourite types of cardboard to eat and their favourite ways of cooking cardboard.
You can’t get through a single day without someone asking you what kind of cardboard you’ll be eating for tea tonight.
Restaurant menus are filled with thousands of different kinds of cardboard for you to try. Enjoying eating a wide variety of cardboard is seen as a significant achievement.
Suggesting that you don’t want to eat cardboard is met with puzzled faces, disbelief, sympathy and even sometimes irritation and annoyance.
Welcome to the life of someone suffering from ARFID
At 17, I was finally diagnosed with ARFID.
I didn’t realise I even had this eating disorder until my CAMHS worker discovered the ARFID page on Beat’s website. I’d felt so scared of food for a long time and yet; because I wasn’t worried about my weight, neither myself nor anyone else could identify why I had felt like this.
I spent numerous of years with CAMHs trying to get to the bottom of my issues. Was it a coping method for the high school bullying? the death of my Nana? Depression?
The lack of support I was given for my educational needs? undiagnosed neurodivergent? All of which were questions for why I was slowly becoming malnourished.
At the start, CAMHS saw a :
Girl - low weight - restrictive eater = Anorexia.
They pounce on that diagnosis and from that moment on they have tunnel vision. Despite the protests from parents, zero body image issues, no calorie counting, they don't listen to a word we say.
What happens then?
They started treating me for an eating disorder I haven't got. They introduced meal plans. Three large, high calorie meals plus 3 high cal snacks and often high cal supplements as well. Not only that, but I was being fed foods that i don't like / have never eaten nor would never choose to eat.
The health “professionals” didn’t take into consideration the textures, smells, taste of the foods they served and expected me to clear my plates, regardless of whether i liked it or not.
If i was unwell with a stomach bug for example and vomit, tough luck! I was still expected to eat my meal plan.
had been labelled a ‘picky eater’ from such a young child and only ate the same things over and over again on a repeating cycle.I wouldn’t dare to add new things to try. People with ARFID are not “picky eaters”. Though 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.
What actually is ARFID you may ask?
Avoidant Restrictive Food Intake Disorder. It was only officially recognised in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) when published in 2013; 11 YEARS AGO!
But it had been controlling my life for many years before that.Unlike other 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 10-15 ‘safe-foods’ (that’s individual items – not meals!) and it is common for most sufferers to stick to ‘beige’ child like foods. This can also mean avoiding entire food groups altogether which are vital for growth and development. 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.
Items on my plate could not touch each other, and I couldn’t cope with complex foods which had a mixture of ingredients and textures.
I struggled not to eat one food item at a time, in a specific order. Furthermore, my safe-foods were brand-specific.
If there wasn’t my usual brand available or it was too expensive, or 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’d describe my reaction towards trying anything other than my safe foods as an extreme phobic response. My heart would be pounding (jumping out at my chest) - my whole body shaking as if I was going to pass out, I felt physically sick (even with emetophobia), 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 due to the sensory issues it caused.
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. Multiple times in 24hrs.
With ARFID, eating can feel like a chore – it’s a dull, repetitive cycle and every day is exhausting. When I finally received a diagnosis after coming from a very traumatic inpatient stay at a psychiatric unit for 5 and half months there still was no help or guidance.
But with that diagnosis I finally felt like it wasn’t my fault that I wasn’t broken in a sense. That there was a cause for it all!!
There are still more health professionals out there who have NOT heard of ARFID than there are who HAVE heard of it. Progress into recognising, understanding and supporting children and young people is painfully, painfully slow. Around the UK, there are little pockets of services that have developed ARFID clinics but they are few and far between. There are literally thousands of children and families being let down, children/young people are becoming very unwell due to sheer lack of understanding.
Health boards simply don't have the funding to train staff on ARFID. GP's are for the most part, clueless and often extremely dismissive when parents explain that their child only eats a handful of foods and the parent blame is ridiculously high.
People who don't understand ARFID assume the child/ person is just a "picky eater" I can assure you, all parents of an ARFID child or young person wishes it was just them being picky. People who don't understand ARFID parent blame and think it must be because the child is spoilt, the parents have "given in" to them or is "too soft" on them. All of which are completely untrue. Those parents are some of the strongest and resilient parents out there. They witness the distress their child/young person goes through when they are desperate to eat something new, just a small bite of something but our brain with ARFID just won't let us.
It isn't a choice at all. Why would anyone choose to go through so much distress and anxiety? Eating for most people is a pleasurable experience, it's often a huge part of people's social life. People like myself are missing out on this because eating for us is stressful and difficult. Now Why would we choose that. No-one in this world would.
The affects of ARFID really compromises your life.. I had to give up education, could no longer join in with dancing, I had to stop attending all my extra clubs I took part in, missed family events all in matter to keep myself safe- I have spent most of my teen years in and out of hospital. I have missed out on a lot of things because of my ARFID and it really does take its toll on you.I was left collapsing quite frequently.
I recently had a bleed on the brain whether this was connected nobody knows but I’m now left with left side weakness and my eyes locking in. My ARFID Is lifelong meaning I’ll have it for the rest of my life however I just need to find strategies and methods to be able to deal with the setbacks to be able to live my life to the fullest
So this eating disorder awareness week I’m bringing much needed attention for this disorder as people are left struggling for years with no input of support.This disorder is life threatening yet there’s no funding or training given to the health sector.This is why it’s very important I bring much needed awareness to it so people can finally feel heard and listened to.
Macy x
