A 19 year old woman has opened up about her unique struggle with Christmas festivities due to a rare condition known as Arfid, which instils in her a phobia of certain foods.
Until she was 17, Macy Williams, from Wrexham only ate cucumber, blended porridge, and plant-based custard. During the festive season, she would only eat a modest amount of stuffing and gravy, while her family enjoyed a traditional meal separately. However, since summer 2023, Macy has been reliant on tube feeding and spent the previous Christmas in hospital.
Supported by her mother, Terri, aged 45, and sister Gabby, 29, Macy maintains a blog to offer support and guidance to others dealing with Arfid. She is hopeful that treatment programmes will become more accessible.
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Macy shares her feelings candidly: "Nobody would choose to live like this, away from their family and away from normal life." She describes her Christmas experience: "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."
Terri, Macy's mother, suspects that the issues started when Macy was an infant, Terri recounts her daughter’s struggle with selective eating, saying: “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 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."
It wasn’t until age 10 that Macy’s condition resulted in a collapse due to malnourishment, landing her in the hospital, beginning a cycle of repeated admissions. With her strength diminished, she had to forsake school and stop dancing, an activity she dearly loved.
Initial misdiagnoses pointed towards anorexia, but her weight didn't suggest imminent danger. Macy shares her own confusion: "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."
Finally, two years ago, she received the accurate diagnosis of ARFID (Avoidant/Restrictive Food Intake Disorder).
She recounts her struggle: "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 last Christmas Day in hospital too."
Diagnosed with autism and selective mutism, Macy's communication challenges add to her ordeal. Terri shares: "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."
While living with Arfid is a lifelong journey, treatment options exist to help foster a healthier relationship with food.
Despite the scarcity of specialist services in the UK and considering treatment abroad, Macy has recently returned home after a year-long hospital stay, according to the Mirror. She expresses her current state and holiday wishes: "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."
