Living with ARFID

This is possibly an Eating Disorder you have not heard about, but it is important to spread awareness to help with a diagnosis so help can become more accessible.

Avoidant/Restrictive Food Intake Disorder, otherwise known as ARFID, is characterised by the following:

  1. Notable weight loss

  2. Nutritional deficiency

  3. Reliance on nutritional supplements

  4. Marked interference with psychosocial functioning associated with caloric and/or nutrient restriction, but without weight or shape concerns.

  5. Failure to thrive

The onset of ARFID usually starts in childhood with behaviours including

  1. An apparent lack of interest in eating or food

  2. Avoidance based on the sensory characteristics of food- smell, appearance, texture

  3. Concern about aversive consequences of eating with a history of abdominal discomfort and/or a fear of choking or vomiting.

ARFID can be mistaken for fussy eating, and parents can become frustrated due to not really understanding why their child will not eat. It can be tough to watch your child either lose weight, not grow like their siblings or peers, and have a limited diet of sometimes only 3-6 types of food.

The fear of eating for some children is like trying to put a spider in front of someone with arachnophobia. It can be a paralysing fear and if not treated life long aversions carefully to food can become embedded.

The treatment model I like to work with is exposure therapy. I like to think of it as building resilience, becoming comfortable in the uncomfortable, and learning to be creative with food. For example, a supertaster who has super-powered sensory systems will become very overwhelmed when trying new food. Taking small steps and trying the same food in different ways, we can work out what is the preferred way to tolerate the food.

Carrots are one of my favourite examples. How many ways can we eat carrot? stir-fried, raw, grated in a salad or sandwich, boiled, roasted, cut longways, cut round, juiced.

Each way produces a different taste and texture, so it makes sense to explore preferred ways to eat it. also, building resilience means we don't give up the first time. If we think of our own experience of food, we likely did not like the taste of coffee, blue cheese, olives, or wine the first time we tried, but we build up a liking to it and begin to appreciate the food for what it is.

I have been working with a lovely lady who has generously shared her story and how she is learning to increase the variety in her diet. Our aim for this blog is to increase awareness and reduce stigma. Eating disorders are complex illnesses that can be overcome, and it can become easier when there are supports in place, particularly with friends and family, knowing how to deal with it.

Meet my lovely client, who now eats carrots.

When did you first realise you had ARFID?

I always knew I was different - I'd seen people who are less inclined to eat certain food groups or are 'fussy eaters' but I'd never met anyone else who was opposed to food intrinsically. When I was around 10 or 12 years old, I began researching eating disorders, probably subconsciously looking for answers about myself. When I came across early ARFID studies, I read the criteria. It was like someone had written my thoughts down. Everything I felt about food was there, and it was all so specific - no room for coincidence. What was it like as a little kid?

Eating was tough when I was young. Everyone brushes off the aversion to food and says 'Oh they're just a difficult child/fussy eater/they'll grow out of it'. I knew I wouldn't just grow out of it, but most people won't take children seriously. In school, they often used treats as a form of encouragement for kids to help them behave well or help the class bond, but I never liked the food. It'd always be the wrong brand, or it would be touching something else on the plate, or it would have too many inconsistencies in texture/visual appearance. All of the other kids had so much fun at class parties or staying at each other's houses overnight or for dinner, but if I did then I would starve the entire time or be told again and again how inconvenient my presence is and how abnormal I am. Maybe all parents, or maybe just mine, like to think that you can force children to do things because they're small or less educated than you, so I've gone through hundreds of situations of being punished for not eating, or punished for finally trying something but the piece I tried wasn't big enough, or my reaction wasn't what they wanted to see. It's a lot of pressure for one person considering we are meant to eat multiple times a day, so the easiest solution was to stop eating. What would you like people to know about ARFID?

That it's not optional, it's a real disorder; we aren't just annoying. I think if there's one thing I'd want from people regarding ARFID, it's just patience. Please just understand we are just like this, and because of it some things just feel impossible.

How would you describe the difference between fussy eating and ARFID?

For me, food was never a priority. It was always a burden - something I'd forget about for days on end until I'd pass out or someone would sit down and force me to consume anything. I think when people are picky eaters, they still have positive associations with food, even if it's a limited food group. They can still enjoy social eating and cooking like most people, just with less variety. But I think that AFRID really takes away the desire to eat altogether. If it goes on for long enough, you no longer remember to eat and substitute meals for anything, you can keep down just to keep you going. I feel like it's desperation to live rather than, for example, avoiding broccoli because 'it's gross'. When I became so weak I couldn't carry my own weight I'd just have teaspoons of sugar until my energy built enough to carry on, but a picky eater would just eat a meal they enjoy (safe food) and continue. It's not that I was just avoiding meals out of stubbornness; something in me just wouldn't let me eat them. When I ate foods I didn't like, I'd always gag instantly and end up vomiting. It's not something you'd want to go through 5+ times a day. ARFID isn't optional; it doesn't just magically disappear. Your brain isn't working properly, and it needs to be fixed. Fussy eaters won't often starve themselves to the point of blindness from deficiency, stunt their growth from lack of minerals, or cause their hearts to malfunction from low weight. ARFID brains can't stop themselves, all they know is that they don't want 'that' (whatever that may be) in their mouth. Worst memory of food as a child.

My parents tried what many people had said 'If they don't eat it - leave it out and don't feed them anything else until they do. Within an hour, it'll be gone.' This would probably work with anyone with a normally functioning brain, but not with me. They served a dish with mince, and the sauce was a different brand than what I ate. The look, texture, smell - it all gave it away within seconds. So the food sat there, and I ate nothing. An hour came and went with nothing but shouting and threats of violence from my parents, having them tell me how much of a burden I am wasn't very effective in encouraging me to eat but they continued anyway. After 6 hours the fat had congealed atop the mince, the plate was stone cold, and I wasn't allowed to leave the table yet. The following morning after sleeping at the dinner table I watched everyone have breakfast, and I left for school with no lunch because I hadn't yet eaten the mince. Two days later, I was finally allowed to eat something I was comfortable with because the mince would probably make you ill after 3 days on the table uncovered. I was only about 6 years old and realised I was very, very different and that I'd much rather die than eat that. Steps you are taking to overcome AFRID

. Getting the help of a dietician has made my life incredible. I am slowly becoming more and more in control of my eating and far more comfortable with food. I briefly saw a psychiatrist who diagnosed me officially and speaking with her helped me to understand more about eating disorders and ARFID. I've also been creating more regimented eating schedules. I find that routinely makes things easier. If I have to think of meals on the spot, I really struggle, so planning helps a lot. The biggest difference for all of this has been the dietician. Having someone with so much knowledge which is trained to know what behaviours around food are healthy, and what to pair together to achieve different goals has been priceless. I'm confident it has sped up my recovery by years, or possibly decades had I not had her. Nutritional goals?

I want to be able to eat salad. That's my closest goal. After that, I'd love to be able to have such a balanced diet that I don't have to depend on supplements like ensure+ or iron tablets. I want to be able to go out to places and actually be able to eat the food there like a normal person. Or eat something so healthy you feel nourished after it because I've never felt that. How can parents be more supportive of their children?

Patience. Everything can be so much harder because you're fighting your natural instincts not to eat. Any pressure or negative emotions around it can make the whole experience bad and put you off trying again. I think if you're patient, celebrate the small victories of your child even having the food on the same plate as their other food, touching it, taking the tiniest bite - that's how you build the confidence and ability to be able to consume normal portions of foods. Focus on being supportive, educate your family members so that they don't put pressure on the child, and be prepared to do it at their pace. You can definitely encourage them to push forward if they're reluctant, but if the mood turns bad, it's better to stop altogether and return to it once they feel calmer. What is not helpful that parents do?

Voicing their frustrations with the child about the inconveniences of ARFID. We know it's not easy, but it's our lives, and we are the ones who have to live knowing it can cause us to die very young, lose our vision from malnourishment, among many other things. The last thing we need to hear is how unhappy our parents are that the lettuce was a waste of money because we won't eat it, or how we make their lives difficult because we won't eat at their favourite restaurant or on school camps. Of course, we know it's hard, but that really doesn't help. And forcing us to eat, as I said, if the situation is negative, the outcome will be too, so forcing someone to eat won't result in them enjoying the food or the experience. Just be patient.

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