A WREXHAM teenager is sharing her story of living with a rare eating disorder in order to raise awareness of the condition.

Macy Williams shared details of what her life is like living with Avoidant restrictive food intake disorder (ARFID) for eating disorder awareness week at the end of last month.

ARFID is a condition characterised by the person avoiding certain foods or types of food, having restricted intake in terms of overall amount eaten, or both.

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.

Macy's story with ARFID began when she was just a baby and 'struggled massively' with food textures.

When she did eventually go on to finger foods she would suck them in-till they were a much looser texture she wouldn’t be able to just bite into them like a typical child would.

Macy purely lived off cucumber sandwiches for six years, with the crusts cut off, and the bread had to be the same size, brand and cut the exact same way every time.

This eventually led to a hospital visit as she was malnourished and she collapsed 10 years old due to low nutrition.

She was labelled as a “picky eater” or a fussy eater and later started suffering with extreme emetophobia with her list of 'safe foods' - food that she could eat - becoming smaller and smaller.

It was after this that her family sought help and found it through specialists and the CAMHS team, who diagnosed her with ARFID last year.

But, now 18 years old, Macy's life is still a day-to-day struggle.

She said: "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."

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Macy added: "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 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?.

"They started treating me for an eating disorder I haven't got nor got the symptoms for. They introduced meal plans and schemes, which included three large, high calorie meals and three  high calorie snacks and if this wasn’t completed then a high calorie supplement smoothie.

"I had been labelled a ‘picky eater/ fussy 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 my plate. I also found that I didn’t receive the hunger cues as most people tend to have I just was told when to eat etc I didn’t quite understand what people meant when they would say “my stomach is telling me I’m hungry” cause I’ve never actually experienced that.

"People like myself with ARFID are not “fussy eaters” though. Majority of us have very real reactions to “unsafe” foods - whether that’s gagging/choking, heaving , vomiting, or experiencing an extreme fear-anxiety response which makes it very impossible to eat anything at all.

The Leader: PIC: Macy Williams, from Wrexham, has shared her story of living with ARFID - a rare eating disorder.

"Items on my plate could not touch each other, and I can’t cope with complex foods which has a mixture of ingredients and textures.

"I struggled not to eat one food item at a time, in a certain order and my safe-foods are very brand-specific.

"I could even see alive bugs such as Maggots and worms within my food which instantly put me off but no-one understood this and called me ‘delusional’ or said that I was ‘making it up for attention’.

"My body physically rejected anything other than what my mind deemed ‘safe’. It was like my throat had completely closed down and wasn’t working correctly. This is the part other people couldn’t seem to grasp, be it friends, family or even healthcare professionals, the sheer anxiety and fear attached to this was horrific."

With ARFID, eating can feel like a constant chore or unnecessary job – it’s just a boring , repetitive cycle and every day is exhausting as the next.

"When I finally received a diagnosis - after coming out from a very traumatic inpatient stay at a psychiatric unit for five-and-a-half months - there still was no help, support 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 and I wasn’t making it up.

"The effects 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.

My ARFID Is chronic and lifelong meaning I’ll have it for the rest of my life however I just need to find a balance and find strategies/methods to be able to deal with the setbacks so that I’m able to live my life to the fullest."