I’m terrified of food, I haven’t eaten anything for a year and my last birthday cake was a cucumber with a candle in it
A YOUNG woman has revealed how she hasn’t eaten anything for a year because she is too terrified by the thought of putting food in her mouth.
Macy Williams, 18, suffers from a rare condition called Arfid which means she has a phobia of certain foods.
Up to the age of 17, she ate only cucumber, blended porridge, and plant-based custard.
But since last summer she has been fed purely by tube. She has spent two Christmas Days in hospital, and her birthday cake was a cucumber with a candle in it.
Macy, from Wrexham, is supported by her mum, Terri, 45, and sister, Gabby, 29.
She writes a blog offering help and advice to others affected by Arfid – and hopes treatment programmes will be developed and made available.
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'NOBODY WOUD CHOOSE THIS'
She says: “Nobody would choose to live like this, aways from their family and away from normal life.”
Her mum, Terri, believes the problems began when Macy was just a baby,
Mum of five, Terri, says: “When she was weaned, she would vomit the baby food back.
“She only ate yoghurt and puddings, but I thought it was a phase.
“Instead, it got worse. She would only eat certain foods and she couldn’t have them all on the same plate.
“She only ate specific brands too – if I tried a cheaper brand, she would know immediately. Her food had to be prepared separately and stored in a different cupboard.
“For years she was dismissed as a picky eater but it was always more than that. She’d have panic attacks and start to retch even when she smelled food.
“She has spent Christmas Days and birthdays in hospital – nobody would choose that. She has a serious illness.”
Age 10, Macy collapsed, due to malnourishment, and was admitted to hospital. She has been in and out of hospital ever since.
From 14, she stopped going to school, and had to give up her beloved dancing because she became too weak.
I can’t even bear the smell of food; it makes me panic
Macy Williams
She was initially wrongly diagnosed with anorexia, and though she was malnourished, she was not dangerously underweight.
Macy says: "I spent years trying to get to the bottom of my issues.
“Was it a coping method for high school bullying? The death of my Nana? Depression? The lack of support?
“The truth is, I really don’t know what triggered this.”
NO SAFE FOODS
She was eventually diagnosed with Arfid two years ago.
She says: “At that point, I was eating only plant-based custard, but last summer I collapsed with a bleed on the brain and was fitted with a feeding tube.
“I now feel I have no ‘safe foods’ left; I can’t put anything inside my mouth.
“I can’t even bear the smell of food; it makes me panic. My mum and sister are really supportive but it is so lonely.
“I’ve been stuck in hospital for months and really, the doctors don’t know what to do with me.
“Christmas and birthdays are the worst because they focus on food. I can’t even be in the same room when my family are eating.
“I spent Christmas Day in hospital too”.
What is avoidant-restrictive food intake disorder?
Avoidant-restrictive food intake disorder (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.
They may have had a distressing experience with food, such as choking or vomiting, or experiencing significant abdominal pain.
This can cause the person to develop feelings of fear and anxiety around food or eating, and lead to them to avoiding certain foods or textures.
Some people may experience more general worries about the consequences of eating that they find hard to put into words, and restrict their intake to what they regard as ‘safe’ foods.
Significant levels of fear or worry can lead to avoidance based on concern about the consequences of eating.
Source: Beat eating disorder charity
Macy has also been diagnosed with autism and has always had selective mutism.
Terri says: “She doesn’t even talk to me now, which is hard, but she is really chatty over email and messenger.
“I live in hope she can get better one day.”
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Macy will always live with Arfid but there are treatment options to help build a relationship with food. However there are not many specialist services across the UK and her family is exploring options overseas.
For more help and support with ARFID and other eating disorders visit Beat.
