Avoidant restrictive food intake disorder (ARFID), was only recognised in 2013
Being invited to a friend’s house for a meal is an occasion most people look forward to — but not Liz Morris.
She’s unable to eat food with certain textures or tastes, including meat and vegetables, so any such invitation sends her into a spiral of panic.
But while Liz’s eating patterns might sound like those of a fussy child, she is in fact a 61-year-old retired NHS worker from Dorset.
And although she has been labelled a ‘picky eater’ for most of her life, Liz has actually been diagnosed with a little-known eating disorder. Those affected can eat only a very limited handful of foods that don’t cause severe revulsion.
Her condition, avoidant restrictive food intake disorder (ARFID), was only medically recognised in 2013, although it has affected Liz her whole life.
‘Certain textures — mashed potato and some overcooked textures of vegetables, fish and meat — made me gag and it was impossible to swallow them,’ says Liz, who recalls mealtime battles dating back to when she was a toddler.
Liz Morris has ARFID disease, an inability to eat certain textured food Experts say that as ARFID usually first appears in childhood, it’s vital to address it early before it becomes entrenched and more difficult to treat. Pictured: File photo of child refusing to eat
‘I remember my mum trying to feed me food and I just didn’t like it,’ she says.
‘I’ve never been able to eat meat. It just lodges in my throat and makes me gag. And with fish, I can only eat cod — and, even then, only from a particular fish and chip shop.’
School lunches were a nightmare: unable to stomach what was on offer, Liz would sometimes faint from lack of food.
She recalls: ‘I have a clear memory of my first day at school. At lunchtime, we all had a plate with a slice of meat, some boiled potatoes and something I did not recognise put in front of us.
‘I would not even open my mouth to attempt to eat it. I just knew that I absolutely couldn’t. By the end of the first week, the headteacher told my mum that I must go home for lunch, as I had to eat something.’
As the family lived a mile from the school, they decided the best solution was for Liz’s mum to walk an extra couple of miles every lunchtime (pushing her little brother in a pram) to take Liz to her grandmother’s house nearby for a sandwich.
The family GP, she says, had no idea about eating disorders, simply telling Liz’s mother that her daughter had a narrow throat.
‘That was it,’ says Liz. ‘No help whatsoever.’ So the family learned to stick to Liz’s ‘safe foods’.
She says: ‘I would eat chips; fish fingers (only Birds Eye); white bread; ice cream; eggs (preferably scrambled but never cold); cake, as long as it contained no fruit; Heinz oxtail soup, with all the meat bits sieved out of it; peeled apples; Rice Krispies and Weetabix; crisps (cheese and onion or ready salted) and Ritz crackers. I would drink milk, too.
‘It’s easier to list what I couldn’t eat: meat, vegetables, pasta, pizza and fruit (except apples),’ says Liz.
And not much has changed since, although she will also now eat very crispy bacon, granary bread and roast potatoes.
Deep fried scampi has replaced fish fingers, which she now cannot stomach, and apples have also fallen off the list.
Experts say that as ARFID usually first appears in childhood, it’s vital to address it early before it becomes entrenched and more difficult to treat. Central to this is understanding the difference between a child having ARFID and a child who is a fussy eater.
Dr Gillian Harris, a clinical psychologist at the University of Birmingham, who specialises in treating ARFID patients, has been researching child feeding behaviour and appetite regulation for the past 30 years.
She says that the condition — previously known as selective eating or perseverant eating — only became a clinically recognised condition ten years ago when it was included in the U.S. Diagnostic and Statistical Manual of Mental Disorders (DSM), widely viewed as the psychiatrists’ ‘bible’.
Although it first occurs in childhood, it can be diagnosed at any time in life, Dr Harris explains.
‘It manifests as an inability to eat certain foods due to their sensory components [i.e. their smell, texture or taste], and a lack of interest in eating foods other than those that are felt to be ‘safe’,’ she says.
She stresses that this goes far beyond fussy eating — there may also be a fear of choking or being sick.
‘Children will literally gag or refuse food and go without for days rather than eat,’ she says.
Typically, the foods they will eat are what we regard as ‘junk’ food — basic carbohydrates such as bread and dry cereals, crisps, biscuits, chocolate and yoghurts.
‘These are all easy to process in the mouth and can be swallowed easily — they don’t need a lot of chewing,’ Dr Harris explains. What’s more, she says, they are also bland-tasting, don’t have strong smells or mixed or slimy textures — and they always look and taste the same.
People with ARFID can also be very specific about which brands and flavours they like — ‘such as Warburtons bread, for instance, because of the ‘safety’ — they know the texture and know it won’t change,’ Dr Harris adds.
Adults and children affected eat a narrow range of ‘basic’ foods, often repeating the same meals every day.
The condition is so little known that there are very few designated ARFID services and no reliable data about how many people have the condition. It’s also very difficult to get a diagnosis — as Liz Morris was to discover.
Typically, the condition becomes apparent by the age of three — often when solid food is introduced, particularly lumpy or textured food that an infant might gag on.
Dr Harris adds that all toddlers are ‘programmed’, from an evolutionary point of view, to be highly cautious of trying new things in case they are not ‘safe’ (known as being neophobic, or afraid of trying new foods) — but some never grow out of this stage.
‘This is not a child being naughty,’ says Dr Harris. ‘The neophobic response is seen in all mammals.’ But although ARFID is a recognised condition, it can also form part of other disorders and can be difficult to diagnose, warns Jane Ogden, a professor of health psychology at the University of Surrey, who has an expertise in eating behaviours.
She says: ‘ARFID can be part of obsessive compulsive disorder (OCD) or anorexia, and it often isn’t diagnosed on its own as a condition.
‘The trouble is that others outside the family, say, see it as picky or fussy eating, which leads to it being normalised, so the parents think it will go away.’
Indeed, the term ‘fussy eater’ causes many problems, says Dr Harris, not least because it implies the condition is the parents’ or the child’s fault.
This can lead to the wrong advice being given, she says, such as: ‘ ‘Leave them, they will eat when they are hungry’ — but they often won’t! And without treatment it could get worse’.
In fact, many people have issues with the taste or texture of certain foods, says Dr Harris, but ‘mostly we can work around this — we have enough other foods to make up a good balanced diet.’ But problems begin if the person is so disgusted by the taste, smell and texture, and so fearful of trying anything new, that they eat only a very small handful of foods — potentially all carbohydrate-based.
‘The last child I assessed could eat only three foods,’ she says.
This can impact their growth, health and ability to join in social activities involving food — and, along with the sensory disgust, are all factors in the DSM definition required in order for someone to be diagnosed with ARFID.
Experiencing this strong feeling of revulsion can have its roots in an individual’s biological make-up, adds Professor Ogden, but it can also be learned by copying other people’s reactions to food.
‘So there’s an inherent version of disgust, but there’s also a learnt version,’ she says, explaining: ‘This can spiral, so you associate disgust with certain textures and you can become preoccupied with this, generating even stronger feelings of disgust.’
ARFID can also be triggered by a specific event, which people come to associate with that food, adds Professor Ogden.
Liz cannot recall a specific food triggering her problems, and says that her mother hoped her eating problems would go away with time.
As they didn’t, she had to learn to cope with the loneliness and isolation that her eating problems brought with them.
‘I couldn’t go on play dates, because what would I eat for tea?’ she says.
‘I wanted to train as a nursery nurse, but I couldn’t — how could I teach a child to eat when I couldn’t? I couldn’t go to dinner parties or parties as an adult, either.
‘Everyone viewed me as the fussy eater — and, to be fair, I was. But I didn’t understand why I couldn’t just eat like everyone else. People must have assumed I was rude or aloof or was just trying to lose weight.’
When she met her husband, Jeremy, she even refused when he invited her out for a romantic meal. ‘What was the point if I couldn’t eat anything?’
In fact, her understanding husband, she says, was the first person who never tried to make her eat something that she didn’t want to.
The couple married in 1991. Worried that her eating disorder might have damaged her fertility, Liz took vitamin supplements to help her conceive.
Despite her fears, blood tests showed she didn’t lack any key nutrients, and after two years, she conceived. She has two sons, Dan, now 29, and Benedict, 27.
She was careful, she says, not to let her boys see her relationship with food — ‘and, thankfully, it never affected them’. Nonetheless, cooking for others and watching them eat is hard, she admits.
It wasn’t until four years ago, at the age of 57, that Liz happened to read about ARFID on the internet. She saw her GP, who had never heard of ARFID and needed to look it up.
‘Three weeks later, he rang me and said he was very sorry but there was no treatment that he knew of.’
Then, two years ago, Liz was at work when she had to liaise with a psychiatrist about a patient. ‘The psychiatrist mentioned ARFID and I just froze and said: ‘That’s me!’ The psychiatrist had so much knowledge about it and we talked.
‘Afterwards, my colleagues, who had overheard, said: ‘We always thought you were just on a diet.’ ‘
Liz counts herself lucky that her condition has never led to malnutrition, attributing this to the fact that her ‘safe’ foods included milk and eggs. ‘And for years I’ve taken a multivitamin, a vitamin B12 spray and vitamin D3.’ Liz is a healthy weight.
Dr Harris estimates that only a third of those with ARFID are underweight. In her experience, she says, it’s rare for ARFID patients to have long-term health problems due to dietary deficiencies because bread, cereal and yoghurt tend to be acceptable foods for most and these are fortified with vitamins and minerals.
However, many patients have low iron levels (due to not eating red meat or vegetables rich in iron). They also struggle to tolerate the taste of iron supplements recommended by dietitians.
Professor Ogden, however, is concerned about the long-term effects of a severely limited diet. ‘Every nutritionist would say you need variety in your diet. No one food is enough to sustain you for all of your life.’
She urges anyone who is worried they or their child might have ARFID to see their GP, explain their symptoms and ‘give it a name’ — and ask to be referred to a psychologist or a specialist in eating disorders.
When it comes to treatment, Dr Harris advises families that it’s important to try to keep mealtimes as stress-free as possible to reduce anxiety levels.
For older children and adults, a form of cognitive behavioural therapy specifically designed for ARFID is the gold standard treatment. Medications aimed at reducing anxiety may also be appropriate for patients who fear vomiting, swallowing or choking.
Managing anxiety is key to helping patients who develop ARFID later in life, rather than focusing on the food, says Professor Ogden: ‘For people to overcome ARFID, they need to relearn how to eat.’
Dr Harris says she is ‘sure that there are adults out there who are only just beginning to understand that they are not alone and that this is a recognised ‘condition’.
‘The embarrassment, the shame, the struggle to fit in socially, the excuses they will have had to have made to get by, will have made life a daily struggle.’
Professor Ogden adds: ‘We don’t want to over-diagnose, but clearly when someone does have a problem, doctors and psychologists need to step in and make appropriate levels of diagnosis.’
For Liz, certainly the diagnosis alone has come as a huge relief — to finally ‘have a name’ for what she’s going through.
‘ARFID still controls every aspect of my life, but it would be amazing if more people understood that we are not simply picky eaters, and that this is a very real and debilitating condition,’ she says.
‘I want to challenge the belief that I am choosing to eat like this. Why would I want to miss out on what people say are amazing tastes and experiences with food?
‘Not being able to eat has affected my social life and my career choices, and may also have a long-term effect on my health.’
