Penny Chapman spent years blaming herself. While other children tucked into party food and birthday cake, her daughter Lily could only stomach five brand-specific items.
It wasn’t until a chance mention at school that she finally found a name for it: ARFID – a diagnosis that brought clarity, but no local support…
Ms Chapman spent 15 years seeking answers for her daughter Lily, now 20, who has avoided most food since she was a baby.
It was not until 2020 that Lily received a diagnosis of Avoidant/Restrictive Food Intake Disorder – known as ARFID – following a private consultation in the UK.
This came after years of distress and repeated misunderstandings by professionals due to a lack of awareness about her condition.
“Everyone initially put her eating down to her autism and didn’t really have an understanding of her condition,” Ms Chapman said.
“It wasn’t that they didn’t care – they just didn’t yet have a name for what we were dealing with.”
ARFID is a recognised eating disorder marked by extreme anxiety around food, fear of choking or vomiting, overwhelming sensory sensitivity or lack of interest in food.
In Lily’s case, it means she can only tolerate five brand-specific foods, skips dinner entirely, and struggles to take oral medication, including antibiotics, because her brain processes them as if they were food.
“I have no doubt whatsoever in my mind that if Lily didn’t have her accepted foods, and there wasn’t medical intervention, that she would starve herself to death,” Ms Chapman said.
The emotional toll on the family has been significant.
“Whether you’re a human or a bird, or any animal, as a mother, it is your job to feed your offspring. That’s what you do,” Ms Chapman said.
“When a child has ARFID, as a mother, you’re trying everything. You’re pulling your hair out. I’m trying everything, and you can’t get them to eat. It is soul-destroying.
“I spent so many years thinking, ‘Did I do something wrong when I was pregnant? Did I do something wrong when eating? Why couldn’t my child eat when everyone else’s children could?’”
It wasn’t until a specialist visiting Lily’s school mentioned the condition that Ms Chapman recognised the signs and began doing her research. “I started reading up about ARFID, and that was Lily straight away,” she said.
Even after Lily received a private diagnosis, many professionals were unfamiliar with the condition.
“Once we had a name for it, and I told professionals what she had, the majority had never heard of it,” she said.
“Even those who had heard of it often didn’t have a good understanding of what it actually involved.
“But once they started researching it, things began to make more sense.”
Even now, Lily and her mother rely on regular video calls with a UK-based dietitian as there are no local clinicians with specialist ARFID training in Jersey.
The effects on the 20-year-old’s life have been significant, as her mother recounts.
“In the afternoon, she goes to bed…her body is helping her conserve energy so she’s rested in bed and not out doing things. So it’s the social side of it,” Ms Chapman continued.
“That is not a life for a 20-year-old.”
Events that revolve around food – from birthdays to discos – are difficult to navigate
“Celebrations always seem to revolve around food. Discos, there’s food. She can’t tolerate that, so she doesn’t go. Christmas is all about food,” Ms Chapman said.
“She’s never ever eaten chocolate… She’s never ever eaten a single piece of birthday cake… and holidays away from Jersey are impossible.”
Another practical issue for families navigating ARFID in Jersey is the limited availability of specific products, and how food imports can be easily disrupted by supply chain or weather-related issues.
Changes in packaging are another issue, with Ms Chapman explaining that many people with ARFID are “brand-specific” eaters. Any change, no matter how minor, can be enough to make the food feel unsafe.
“Lily always ate Hula Hoops,” Ms Chapman explained. “But in 2021, they changed the shade of red on the packet. Well, that was it. Hula Hoops went through the window.”
She also wants to raise awareness that ARFID doesn’t always lead to low body weight, and that can add to the misunderstanding
“If someone with ARFID has unlimited access to their safe, accepted foods, then they can maintain a normal weight, or even be overweight, because most of the preferred foods tend to be carbohydrate-based – crisps, bread, pasta, chips and things like that,” she said.
“Some professionals still think that you can’t have an eating disorder because you haven’t got a low body weight. There are far too many stereotypes around that you can’t possibly have an eating disorder unless you’re skinny,” she added.
“Eating disorders have nothing to do with body weight, and there’s still a serious misconception around that.”
Ms Chapman is now calling on the Government to urgently put in place a clear pathway for ARFID diagnosis and treatment, train professionals across different services and departments, and provide long-term support for families.
“We do not have a pathway in Jersey, and we do not have the trained staff in Jersey to manage ARFID,” she said. “I want a recognised pathway, because it is a bit like ‘pass the parcel’ at the moment, because nobody really knows where it falls.”
Mental Health Director Andy Weir has confirmed that the Health Department and the Child and Adolescent Mental Health Service are currently reviewing the eating disorder pathway.
Considering whether there should be a child and adult parthway for ARFID will form part of this, he confirmed to the JEP.
However, the timeline for this is not clear.
Deputy Catherine Curtis, Chair of the Children, Education, and Home Affairs Scrutiny Panel, said she was “very pleased to see progress being made”.
“Proper recognition of this condition could help a lot of children and families,” she added.
And early recognition is something that Ms Chapman believes could have made a big difference to her family’s life.
“Had we known what we were dealing with much earlier, I don’t honestly think she’d ever be cured, but I think she would probably be in a much better place,” she explained.
Going forward, Ms Chapman is working to raise awareness and advocate for families to ensure that parents are supported and informed.
One of the most powerful moments for Ms Chapman was during a consultation in the UK when a professional told her that she wasn’t a bad mother and she hadn’t done anything wrong.
It was the first time she had felt seen and understood.
Now, Ms Chapman wants to ensure no other family experiences the same years of confusion and isolation.
She has launched a Facebook support group – The ARFID Huddle CI – for parents in Jersey and Guernsey, which now has around 60 members.
She has also developed an online ARFID training course to offer practical guidance for parents and professionals, and she will be running two taster sessions about the condition this summer for Adult and Community Education.
For more information, visit neuro-unity.com or email penny@neuro-unity.com.
