Exclusive:
Macy Williams suffers from a rare condition which means she has a phobia of certain foods. It leaves her dreading her Christmas dinner every year and eats separately from her family
A young woman who is frightened of Christmas dinner has revealed she will spend Christmas Day without festive food.
Macy Williams, 19, 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.
At Christmas, she would allow herself only a small portion of stuffing and gravy whilst her family tucked into a traditional dinner in another room. But since summer 2023, Macy has been fed purely by tube. She spent last Christmas Day in hospital.
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. Macy says: “Nobody would choose to live like this, aways from their family and away from normal life.
“At Christmas, my family come to visit me, but there will be no chocolates, no prosecco, no Christmas fayre. When my family eat, I just go into a different room. I can’t bear it.” 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 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 Day and birthdays in hospital – nobody would choose that. She has a serious illness. Her last birthday cake was a cucumber with a candle in it.”
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. She was initially wrongly diagnosed with anorexia, and though she was malnourished, she was not dangerously underweight.
She 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.” 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 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 last Christmas Day in hospital too.” Macy has also been diagnosed with autism and has 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.” 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. But she was recently discharged from hospital after a 12 month stay and hopes to be at home for Christmas. She says: “I can’t eat a thing. I will be tube fed at Christmas. But I’m so pleased to be home with my family, that’s the best gift of all.”
