A 19-year-old faces a Christmas like no other, as she grapples with the rare eating disorder Arfid. The young blogger reveals: “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.”
Up until two years ago, Macy Williams from Wrexham said her diet was limited to cucumber, blended porridge and plant-based custard, making festive dinners particularly challenging. Despite allowing herself only some stuffing and gravy, she now relies solely on tube feeding since summer 2023. Terri, her mother of 45, supports Macy alongside her sister Gabby, aged 29.
While facing her own struggles, Macy reaches out through her blog to assist others dealing with Arfid, and she remains hopeful for future treatments saying: “Nobody would choose to live like this, aways from their family and away from normal life.”
Her condition, according to Terri, took root in Macy’s infancy but it took years before she was finally diagnosed with Arfid two years ago, reports The Mirror.
Terri, a mother of five, shared her distressing experience: “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.”
At the age of 10, Macy collapsed from malnourishment and was rushed to hospital, marking the beginning of her ongoing battle with health. Since then, she’s been in and out of hospitals, forced to quit school at 14 and give up her cherished dancing due to weakness.
Initially misdiagnosed with anorexia, despite not being dangerously underweight, Macy struggled to understand her condition: “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.”
Macy recounts her harrowing experience: “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.”
Describing her aversion to food smells, she says, “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.”
The holidays amplify Macy’s struggles as she shares, “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, Terri explains, “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 Macky grapples with Arfid, her family eyes international treatment options, although resources are scare more locally. After being hospitalised for an entire year, Macy expresses optimism about her discharge: “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.”
