I have an eating disorder called ARFID. AMA

[Soubriquet]

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.

So if you don't step out of the small range of food items. Is it not just a case of you being extremely risk averse? Do you restrict other areas of your life?

How we're you during your pregnancies? Did you still eat the same amount?

Although im not underweight a lot of what you say rings true for me.
Although i am trying to lose a bit of weight now for health reasons, food has always been a battle.
I do enjoy some foods, but it is sooo limited!
I have problems with textures and appearances ( all my life) and there are only a few things i will eat now.
I have gone to family meals out and had no actual meals as there was nothing on the menu i felt i could eat.
I have started meals and felt sick and unable to continue.

See the fancy restaurant thing baffles me

I can’t understand why people would spend so much on a decent meal.

If I go to a restaurant, it’s usually one like weatherspoons or something similar to that.

There I would have either Steak and chips or Bacon egg and chips.

With my pregnancies, I had HG with dd so anything I ate was seen as a good thing.

With ds, I ate my usual meals but I did eat more of them.

[quote CarolEffingBaskin]@Soubriquet

Perhaps it was the wrong word to use but i don’t think my parents could have done anything more apart from perhaps seek medical help. And no, feed your dd what she will eat. She may grow out of it like my sister did

Apologies, OP, reading my message back it seems quite combative, it wasn't meant to be. More worried in tone as I'm really just pinning my hopes on her getting over it as she gets older! It's got much worse since the start of this lockdown so I'm convinced there's an element of wanting control involved for her. Thank you for the reassurance. I'd decided to leave it be until the world is more normal and then consider some outside help if we can't sort it ourselves. I really appreciate your reply, thank you. [/quote]
I don't know about others, but it isn't control. It's feeling safe. I know certain foods I can eat without thinking compared to ones I am scared to eat, does that make sense? I'm not sure I've explained it very well.

I see what you mean

I don’t know why I can’t eat different or new foods

I suppose there is a sense of fear as it terrifies me at the idea of eating something new

Soubriquet do you know what it is you’re afraid of? Like what the fear actually revolves around - ie what are you afraid will happen if you try something new? And why is it scary?

I really don’t know!

That’s my problem!

I wish I did as it would make taking that step so much easier, but no I have no clue

Do you have any phobias?

Eg I have claustrophobia and my response is not rational nor easily controlled.

I was wondering if it’s similar. Maybe phobia is too strong an example.

The way it was described with regard to the child in our family was that, no matter how much he wants to eat, the sight of the food causes such an extreme fear reaction, that there is so much adrenaline pumping round his body that he simply physically cannot eat. The more he tries (or anyone tries to make him), the worse it gets.

It is truly horrendous for his parents and all the comments about him being fussy, his parents being soft, the "he's not going to starve himself" make things a million times worse. I don't know how they stop themselves from screaming that actually he DOES starve himself to the extent of needing hospital treatment (that was a blessing in disguise because that triggered doctors taking it seriously - they didn't before because he was a healthy weight).

It is also extremely stressful when your growing child will eat only white bread, the "right" kind of spread, white rice cooked the "right" way (texture and sight), vanilla ice cream, meringue, very bland cheese

Intensive weekly sessions with a specialist are helping, but it's going to be a very long process. I'm so sorry you've struggled to find adequate help OP. We all get really excited when he tries anything new. It only happens every couple of months and he generally spits whatever it is out, but just the trying is a huge step forward.

@Oneearringlost

Is it a psychiatric disorder like many other eating disorders, tied up with control , rejection of oneself, low self esteem, self harm, etc...

It occurs very young, so I seriously doubt it. The child in our family was displaying symptoms by age 3.

Flippy I questioned that too.

I don’t think it’s correct.

Hi op, I feel like my dd has this. She is a ridiculously fussy eater.
If I try and make her eat something she doesn’t like she will gag and retch. She only drinks milk or a build up shake. Juices water and anything else makes her sick.
She has had anaemia and is quite skinny for her age.
I’ve had the whole ‘if she’s starving she will eat’ she won’t.
I’ve recently started her on supplemental milkshakes from the pharmacy after speaking to a paediatrician and dietician about it.
She was diagnosed with food aversions rather than fussy eating.
Any tips or advice of how to get her help?

@bathorshower

Sorry if you've answered this already, do you know if you weaned 'normally' and this started later (if so, at what age), or were you always very limited in what you could eat.

I'm asking because I suspect DD has a form of this, and she really didn't want to wean, she vomited pretty much anything else that I got into her mouth for quite a while (thankfully not any more).

The child in our family was a really good eater when he first weaned (garlic mushrooms anyone?) and gradually got more and more restrictive

@SingingLoud

I have something similar and it stems from having emetophobia.

Have you been formally diagnosed? Were you diagnosed through the NHS or did you have to go private?

This isn't at all like emetophobia though, because the sufferer can vomit almost at will, for example if they think they have been tricked into eating something they don't eat.

I don’t like vomiting (who does?!) but I don’t have a problem with it

I wish I had some advice for those who have children suffering but I really don’t.

All I can say is let them eat what they can, don’t force them to try new food, let them try it at their own will and don’t make a big deal of what they do and don’t eat unless it becomes a serious medical harm.

You can get paediatric shakes from places like boots that can help, you can also buy the drinks I get off places like amazon but they do cost a lot of money

I wonder, if you don’t know what you’re afraid of, but you know you’re afraid, that this is related to trauma, in which case you might find hypnotherapy could help you.

Maybe

I can’t eat rice krispies anymore due to an incident

I was in hospital with a severe water infection, I got served rice krispies but they had gone all soggy and soft. I had a spoonful and immediately threw them up. Can’t eat them since

I don't think health professionals know how to help. Ds's Camhs nurse told us that Ds's weight is so low that if he had a conventional eating disorder then he would be getting intervention and support from the eating disorders team. But because he does not have issues with self image and they think it's ARFID then it's not for them to deal with.

This sounds really difficult for you and like many others, I've never heard of this eating disorder so thank you for posting.

How are you with handling and smelling other foods? Do they provoke the same reactions if you're not eating them?

I remember seeing something that said children need to be introduce to foods x many times before they'll eat it, so they can get used to touching them and their feel and smell. I'm not suggesting that this is a solution for you, but when you've tried new foods have you had to spend time adjusting to their presence first or can you just try them straight out?

Also, if I may ask, how does your condition effect you mentally/emotionally?

When I read accounts of what it's like to live with something such an anorexia or bullemia, it sounds like absolute torture.

I don't know whether its the same for you, but if not surely it must effect your relationships with others?

Food and meals are such a core part of our social interactions. May I ask if it has impacted your self esteem and how you view yourself?

Do you feel that people with anorexia are treated more sympathetically because people are so frightened by the physical appearance of the disorder?

Very interesting to read this thread.

My DP, who had eaten like he was bloody getting paid for it his whole life and always been a massive man, developed this overnight a few years ago. He’d been having severe reactions to chemotherapy and was vomiting whenever he ate. This turned into an aversion to foods because he was scared it would make him vomit, which became so severe that he’d just vomit anyway even if it wasn’t the nausea/chemo making him vomit if you see what I mean. He’d open his mouth, the tiniest bit of say potato would touch his tongue, and he’d just throw up all over the plate. Or he’d start trying to eat it, and then feel like the food was choking him, gag and spit it out everywhere. It was the worst time of my life. He literally almost starved to death, lost all muscle in his body due to malnutrition and had to learn to walk again so I also hate it with a passion when people say ‘they’ll eat if they’re hungry’.

To the PPs with children - it was absolutely awful seeing a grown man go through this so I can’t even imagine what it must be like with a child.

Also OP I don’t know if you pay for yours yourself (you mentioned Amazon and Boots) but then GP did agree to prescribe us the shakes which helped massively with the cost.

@hopsalong

Do you feel that people with anorexia are treated more sympathetically because people are so frightened by the physical appearance of the disorder?

I think people have more understanding of it so people respect it more

People like me are just called picky eaters and should get in with it

And yes my shakes are on the nhs