Warning: This story discusses eating disorders.
Before going to bed most nights, Eleanor Whitmore, 15, brushes her teeth and unwinds with an audiobook.
She will also connect a bottle of a high-calorie, nutrition-rich liquid to a pump and tube that feeds directly into her stomach while she sleeps.
The liquid supplements the few "safe" foods she eats. Currently, that's an odd selection: chocolate, lettuce and carrot. Almost anything else elicits a visceral reaction beyond Eleanor's control. Her face screws up, she feels nauseous and inevitably whatever it was is spat back on her plate.
"I was repulsed. I couldn't swallow," says Eleanor, whose relatively normal behaviour towards food shifted at age 10.
"The PEG," as the device to her stomach is called, has taken the pressure off Eleanor to eat enough to survive. In the five years since she became repulsed by food almost to starvation, she has begun finding a sliver of enjoyment in eating and putting on weight.
Her condition is a relatively new mental illness diagnosis called Avoidant/Restrictive Food Intake Disorder or ARFID. It entered the annals of psychology in 2013 and is a branch of the eating disorder tree. Whereas anorexia, another eating disorder, is typically characterised by a fear of putting on weight, ARFID often revolves around an aversion to food and eating.
Much is unclear about the condition that affects adults as well as children. An incidence of choking, vomiting or severe constipation can trigger it. ARFID is also common alongside autism where often the taste, texture, smell and sight of food overloads the senses. Others have a disinterest in food.
Eleanor Whitmore's pump that helps feed her while she sleeps. Photo: RNZ / Samuel Rillstone
"Milk forever"
Annie's 10-year-old son is thriving in almost every area of life - socially, academically and in sports - but not with his eating. He doesn't eat. He only drinks a specific milk supplement that must be heated to a specific temperature and only from a specific sippy cup he's had since he was a toddler.
"I think he will live on milk forever," Annie says.
Annie, an early education teacher from Palmerston North, first thought something was up when her son didn't explore the world by putting objects in his mouth, as most babies do. He showed no interest in food and was breastfed exclusively until he was more than a year old.
By age 18 months, Annie's son had an ARFID diagnosis and unlike about half of those with ARFID, he is not on the autism spectrum. She asked that her last name be withheld so she can't be found online and trolled for her parenting.
For much of his life, Annie's son has been in and out of hospital for dehydration or malnutrition. At times, he will refuse to drink even his supplement.
"If anyone said to him, 'Why don't you eat?' He would say, 'I don't know,'" says Annie. "And that's what he's said to his therapist for the last three years is, 'I don't know'."
How ARFID is diagnosed and treated
Annie's son would be considered severe on the ARFID spectrum which can be made murky by the picky eating phase most kids go through.
Many of the kids that go on to get an ARFID diagnosis typically have less than a dozen safe foods, says Emily Jones, a feeding therapist from Massey University.
"My big red flag would be that your child is dropping a whole food group in their repertoire. They don't eat any fruit and veg. They only maybe go to one texture," she says.
Other red flags include avoiding family dinners, losing weight and nutritional deficiencies shown through blood tests.
The morning I interviewed Jones, she was working on getting a young girl to eat a tiny sliver of processed meat (an unsafe food for the client) between two pieces of white bread (a safe food).
"We'll try to do things like, build bridges with the sandwiches because I know she likes white bread and we're doing things like that, but it was just too much for her," Jones says.
Dr Rachael Mayne Photo: supplied
ARFID prevalence has been estimated to be anywhere from 0.5 percent of the global population to 15 percent, says Dr Rachael Mayne, a clinical psychologist at the New Zealand Eating Disorder Clinic.
Once patients are diagnosed correctly and provided with appropriate treatment, ARFID can be reversed in many. Like with most conditions, the earlier the diagnosis, the better.
"We're generally seeing really good results and positive change. Clients go on to learn skills to maintain their weight and live really full lives," Mayne says.
However, medical professionals in New Zealand are "still very much learning and I think we've got a long way to go in terms of health professional training," she adds.
'I blamed myself for so many years'
Most of those with ARFID or whose children have ARFID that RNZ spoke to said that getting a diagnosis was a challenge. The length of that process was largely determined by the psychologist or paediatric doctor you happened to get and how knowledgeable they are about ARFID.
Elizabeth Nicole, 25, spent crucial years fighting the wrong eating disorder. She was misdiagnosed as a teenager with anorexia. Her treatment included forced feeding.
Earlier this year, she was diagnosed with ARFID and autism after a dietitian Nicole had begun working with started to doubt the anorexia diagnosis.
"I can't explain to you the level of anger, sadness and grief," she says. "I blamed myself for so many years for quote-unquote not getting better."
Now, with ARFID-specific treatment, Nicole already has a few dozen new safe foods. However, with so many years severely underweight and malnourished there is no guarantee her body will survive the stress of refeeding, she said.
'We've had to sacrifice'
Sam Whitworth, from Christchurch, had little support in the early days of her son Mason's ARFID diagnosis. Now, besides popcorn, marmite sandwiches and Blue Bird chicken-flavoured chips, much of 10-year-old Mason's nutrition comes through a feeding tube. His weight has stabilised, and hospital visits are less frequent.
But it means that the family activities and holidays - including for Whitworth's two older daughters - are near impossible.
"There are some really strong and really hard things we've had to sacrifice as a family because of it," Whitworth says.
Where to get help:
Need to Talk? Free call or text 1737 any time to speak to a trained counsellor, for any reason.
Lifeline: 0800 543 354 or text HELP to 4357
Suicide Crisis Helpline: 0508 828 865 / 0508 TAUTOKO (24/7). This is a service for people who may be thinking about suicide, or those who are concerned about family or friends.
Depression Helpline: 0800 111 757 (24/7) or text 4202
Samaritans: 0800 726 666 (24/7)
Youthline: 0800 376 633 (24/7) or free text 234 or email talk@youthline.co.nz
What's Up: free counselling for 5 to 19 years old, online chat 11am-10.30pm 7days/week or free phone 0800 WHATSUP / 0800 9428 787 11am-11pm Asian Family Services: 0800 862 342 Monday to Friday 9am to 8pm or text 832 Monday to Friday 9am - 5pm. Languages spoken: Mandarin, Cantonese, Korean, Vietnamese, Thai, Japanese, Hindi, Gujarati, Marathi and English.
Rural Support Trust Helpline: 0800 787 254
Healthline: 0800 611 116
Rainbow Youth: (09) 376 4155
OUTLine: 0800 688 5463 (6pm-9pm)
If it is an emergency and you feel like you or someone else is at risk, call 111.