The pandemic has been particularly challenging for people like Phoenix, say eating disorder experts.
Phoenix Richardson is 15 and one of his favourite things to eat is chorizo. Cook it on a raclette and you have food heaven.
Food hell includes a very long list of things, as is true for others with his condition, avoidant/restrictive food intake disorder, or ARFID.
When the pandemic hit, Phoenix’s mum, Vickie, was frantically buying up “safe” foods he would eat.
Pasta and sausages was their shopping stockpile, not toilet roll.
The Covid outbreak has been particularly difficult for people affected by eating disorders, says the charity Beat.
Spokesman Tom Quinn said demand for their helpline “soared” as a result.
“It’s not surprising,” he explained, “as those affected and their families have had to cope with extreme changes to their daily routines, support networks and care plans, all while also dealing with the additional stress the pandemic has brought.”
Loss of control forms part of Phoenix’s anxiety around food: “For a period of time, I could only trust mum or myself to cook, otherwise I would panic. My own dad couldn’t even cook…or granny. Even if I watched I would be like ‘this is different, I don’t like it, I’m panicking’.”
His mum says it became clear from a young age that Phoenix had an unusual relationship with food. Certain textures and smells repulsed him and, as he got older, his eating became more and more restricted.
- People with it avoid specific foods or entire food groups, restricting the overall amount eaten or limiting the nutritional range of food they consume
- It is not driven by issues around weight and body image
- Instead there is low interest in food and eating, sensory issues or concerns about feeling or being unwell after eating
- That can include being very sensitive to the taste, texture, smell, or appearance of certain types of food, or only able to eat foods at a certain temperature
Find out more about ARFID here
The Richardson family struggled for years to get recognition and help.
Vickie said: “It impacted all of us because we could only go to certain restaurants that were ‘Phoenix approved’.
“If we went on holiday it was a nightmare. We would have to take food with us. Taking hummus to Greece is a bit daft, but we still had to do it.
“My younger daughter, Clara, through learned behaviour, is quite a fussy eater but there is a very distinct difference between fussy eating and ARFID.
“ARFID is very pervasive and it gets into every single aspect of food that you can imagine. Everything is controlled by the next meal.”
Vickie said it wasn’t until 2019 that she became aware of the condition, when she read about a young man who went blind from only eating a limited diet.
She then contacted an eating disorders centre at the Maudsley Hospital in London, and Phoenix was diagnosed.
Phoenix said: “I was just about 14 when I was diagnosed with ARFID, so about seven years after my autism.
“It was like ‘oh goodness, another diagnosis’ but also ‘no, this makes sense’. It was very much an eye-opener.”
For Vickie, it was validating: “To finally get recognised that there was actually a problem. It wasn’t just bad parenting, which is something, unfortunately, ARFID gets blamed on frequently.”
She advised other parents in her situation, struggling to get a diagnosis for their child: “Keep at it. Be the squeaky wheel. Be the advocate your child needs. It doesn’t matter if you come off as the pushy mum or the noisy one. Keep going because there is help out there.”
Phoenix says things are much better for him now: “I’m a lot happier to try new things because the amount of anxiety has gone down.
“It’s allowed me to order and think ‘OK, this is what’s going through my head’. Not prevent it, but help it not give so much of an input. Not prevent it but help regulate it.”
Dr Rachel Bryant-Waugh is a therapist at the Maudsley, treating people with ARFID and other eating disorders.
She said the pandemic had caused extra anxieties for some, heightened by concerns around issues like contamination, and feelings of loss of structure and control.
“Right at the start we anticipated that it was really important to change our way of working as soon as possible. We anticipated that we were heading for a difficult period for many young people and started offering remote counselling and support when face-to-face meetings weren’t possible.”
She said awareness of ARFID was improving, but there was still some way to go.
She advised that it may be worth talking to a GP, if, “your child’s eating behaviours are changing and reducing, and that is having an impact on their weight and on their health and their basic overall nutritional adequacy of their diet”.
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