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AMA
Original poster

I have an eating disorder called ARFID. AMA

136 replies

Soubriquet · 02/02/2021 15:46

Afrid stands for Avoidance and Restrictive Food Intake Disorder.

I spend a lot of my time not eating. The feeling of being hungry is normal to me.
You always get people who say a child will eat when they are hungry. I wouldn’t.

I’m also extremely picky with what I eat. This is the restrictive part.

I can only eat certain brand of food, and I don’t eat much.

OP posts:
slidingdrawers · 02/02/2021 16:00

Do you believe you've always had this, i.e. since childhood?

If so, how was this managed by your parents/carers?

LucyLocketsPocket · 02/02/2021 16:02

Why don't you eat when you're hungry?

Nighthawker · 02/02/2021 16:02

Can you manage to drink things like nutrition shakes to top up your calorie intake or are they off limits too?

NoImagination90210 · 02/02/2021 16:02

Is this a form of anorexia?

Original poster
Soubriquet · 02/02/2021 16:08

Yes I’ve always had it but it’s gotten worse as I’ve gotten older.

I don’t know why I don’t eat when I’m hungry. I just don’t. I can’t make myself eat when I really don’t want to as I’m likely to be sick (not bulimia though)

I actually do have nutritional shakes now. I spent most of my life severely underweight but I’ve been drinking these shakes 1-2 times a day for the last 2 years and I’ve finally for the first time in years been a healthy BMI.

No it’s not a form of anorexia. I knew I was under weight. I didn’t think I was too far. I just don’t like food

OP posts:
Flippyferloppy · 02/02/2021 16:16

Did you get any help as a child? How old were you when you found out? We have a child in our family with this and he ended up in hospital with dehydration and malnutrition. He has the nutritional shakes now too. My understanding was that it is supposed to improve over time (but maybe that's because he is getting lots of help)

SmidgenofaPigeon · 02/02/2021 16:17

As a former (thankfully recovered) anorexic myself I am struggling to understand how this is NOT considered a form of anorexia. Can you send any light on that?

SmidgenofaPigeon · 02/02/2021 16:18

*shed

Original poster
Soubriquet · 02/02/2021 16:18

No, I didn’t get any help as a child. I was just labelled as fussy and my parents pandered to it for an easy life.

I finally got help about 3 years ago which is how I finally got offered the shakes.

I saw a food psychiatrist who immediately understood I didn’t have anorexia but this instead.

Before I had the shakes, I was in constant pain with my back and there was no way I could work. However, because I’ve now put on the weight, I have the strength to work. I still suffer from bad back and I’ve been diagnosed with osteopenia because of my poor diet

OP posts:
Original poster
Soubriquet · 02/02/2021 16:20

@SmidgenofaPigeon

As a former (thankfully recovered) anorexic myself I am struggling to understand how this is NOT considered a form of anorexia. Can you send any light on that?
From what I understand, anorexia patients have a problem with food due to weight issues.

My disorder means I physically can’t eat certain foods. I don’t think I’m underweight, I just can’t bring my self to eat sometimes. But when I do eat, it has to be certain foods

OP posts:
SmidgenofaPigeon · 02/02/2021 16:20

I’m not trying to pick, I’m genuinely wondering, but maybe the term didn’t exist when I was going through treatment, or at least wasn’t widely recognised.

Original poster
Soubriquet · 02/02/2021 16:20

No, don’t worry. I completely understand where you’re coming from

OP posts:
SmidgenofaPigeon · 02/02/2021 16:21

Well would you say they both come down to control? Mine was absolutely to do with appearance at first but quickly became an avoidance issue and a way to feel in control of certain (a lot of) situations.

Moltenpink · 02/02/2021 16:21

Do you think that anything in your childhood caused it, or is it something you were born with?

Tiredhungryandcranky · 02/02/2021 16:24

Never heard of this before and I've just googled it and could actually cry. I'm not severely underweight but have countless nutritional deficiencies because I don't feel like eating and I only eat about 7 different meals. Literally cannot eat anything with certain textures will gag before it even gets near my mouth so I just want to say thank you, because I now feel like my whole life I have been made fun of for being picky and not eating for attention and I've spent years telling people it's not a choice I physically can't do it. I finally feel like this is probably why. Do you have any of the other symptoms or just not eating?

GCITC · 02/02/2021 16:25

I'm overweight but understand your issues with restrictive eating.

Like you I literally cannot eat something I don't want to. This can be something I usually like but don't want in that moment. Sometimes the thought alone makes me vomit.

Hlh2020 · 02/02/2021 16:25

Is this a sensory issue where certain textures and smells can't be tolerated?

SmidgenofaPigeon · 02/02/2021 16:25

Ok, I am starting to see few quite big differences between the two. I guess ‘anorexia’ has been used as an umbrella term for a long time in general and there are a lot of disorders that deserve their own name and platform that previously would have been grouped under that.

TheRealMrsMorningStar · 02/02/2021 16:28

How many different foods do you eat? Did the doctors take you seriously of you asked for help?

I am worried that dd2 has this. She is 6, currently being assessed for ASD, and will eat certain foods but nothing wet, no cheese (no dairy unless you count flora and what she will get from chocolate because she does like chocolate), for breakfast she will eat bran flakes or cinnamon squares dry, she will drink water (maybe a few sips of peppermint or camomile tea), currently lunch is crackers with flora - nothing else (this since lockdown 3.0, previously she would have other bits with it), dinner is pasta (no sauce) or rice, and carrots and peas. Getting protein into her is hard. She will have some chocolate and crisps during the day after carrot sticks and cucumber sticks for snack. I don't know if she is fussy or something actually wrong.

Glad you have reached a healthy weight.Flowers

Lordamighty · 02/02/2021 16:29

Do you wonder if your parents hadn’t pandered to your restricted food choices whether things might have been different?
Also, is your sense of smell ok? The only reason I ask is because years ago I temporarily lost my sense of smell due to illness & had to force myself to eat.

LApprentiSorcier · 02/02/2021 16:40

Hello OP and congratulations on reaching a healthy BMI. Are you working with your food psychiatrist to broaden the range of things you can eat, or are you comfortable relying on the nutritional shakes to stay healthy?

Original poster
Soubriquet · 02/02/2021 16:40

No the doctors don’t take it seriously

I think if parents hadn’t pandered I would have been in hospital a lot

Urm, symptoms it’s hard to say. I can’t bring myself to try new foods is one. I can’t eat if I’m not hungry, so I can actually go days without a proper meal.

My sense of smell is very good so no worries there

As to how many foods I eat, it’s very small list...

Sensory does take part in it. I cannot ever eat mash potato for example. It makes me gag. Boiled potato is fine but as soon as it’s mashed it’s no good

OP posts:
WellTidy · 02/02/2021 16:41

My son (8yo) was diagnosed with this when he was 4yo. He also has ASD.

Lord it honestly isn’t a result of parents pandering to restricted food choices.

Original poster
Soubriquet · 02/02/2021 16:41

Psychiatrist discharged me as she doesn’t deal with my type of disorder

I was suppose to get one especially for it but it never materialised.

I’m happy relying on the shakes for now

OP posts:
Isabeller · 02/02/2021 16:43

Thank you for your generosity in sharing your experience.

My neurodiverse child has always been a challenge to feed. I don’t think it’s about control or self image at all.

They can be easily put off eating and I almost always have to feed them at least part of their daily intake to ensure it is of a reasonable quantity and variety. I don’t make it a battle, it was a problem at school before lockdown. They have always been at the bottom of the centile chart.

They don’t have a ‘picky’ list of foods exactly because will often not eat something they like. I remember them falling asleep holding a chocolate biscuit or just taking one bite from something that was a ‘treat’. I often offer new foods to taste which are almost always refused, in practice the list of foods that might get eaten is small. But sometimes they really like something and eat a reasonable portion with little or no help - pretty rare.

I came to the conclusion that they didn’t feel hunger signals in a ‘typical’ way and also that even when definitely hungry they might not eat and require quite considerable help to do so.

Fortunately they drink water although again prompting, persuasion and actual help eg holding cup to their mouth is often needed.

There are lots of knock on effects and this is just one aspect of care they need.

I would like to ask you two things if that’s ok.

  • are you ok drinking water when you are hungry?
  • does my description sound at all similar to your experience and if so am I doing ok or what would you advise?
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