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.

Might you be on the spectrum? I've read that many girls with eating disorders are often misdiagnosed and actually have autism. Autism often involves sensory issues around food so girls become avoidant and just stop eating.

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?

Yes diagnosed through nhs but it was a huge battle

I don’t drink water. Don’t like the taste

I either drink tea, sprite or lucozade squash.

I have a list of foods I will eat but even then, if I don’t fancy it as such, I can’t eat it

I don’t think I’m on the spectrum though it’s an idea

What, if anything, would have helped you as a child?

I feel like my DD has a form of this. She has an aversion to certain textures of foods. She is also underweight and trying to put on weight by using protein shakes. She also is overwhelmed by big portions and prefers to eat little and more often , and often at odd times of the day. Although an adult (just) I have always suspected ASD as she has had friendship issues and anxieties too.

Eating disorders are so tricky for the person involved and the whole family. We are always worried about which tack to take for the best. She does eat a reasonable variety of food but she just isn’t that fussed about eating and never has been.

@MarshaBradyo

What, if anything, would have helped you as a child?

I really don’t know

Perhaps having a psychiatrist from a young age might have helped but I really don’t know

How do you cope in social situations that involve food. I've been to weddings, parties etc and felt humiliated by people when I ask for a very specific meal what people would call "kids choices" adults just seem to think it's a choice that I don't eat "proper food" and now I avoided these kind of situations altogether.

Thanks for this thread OP, it’s really good of you to shed a light on this.

I was going to ask you if you’d had any therapy, or would consider it, if it meant you could be able to eat a wider variety of foods?

I have this too! It's strangely nice to meet others with the same problem.

Have you tried hypnotherapy? I thought it was a load of crap but my mum forced me to go at age 21 and it has helped. It mainly gave me breathing techniques to stop myself from gagging or retching, as well as a plan on how to try new foods. You start off looking at the new food, holding it, putting it up to your mouth, holding a tiny bit in your mouth and spitting it out, chewing and spitting it out and then finally swallowing a tiny bit. Each stage can take weeks but it has worked for me. I'll never eat normally but I can go out to restaurants now and find things I can eat without the embarrassing customisation.

Are you also a super taster?

I think it’s really hard. I have experience with this with someone young who is very similar.

And it’s almost impossible to change. They’re ok nutritionally - having seen nutritionist on NHS who discharged them after one appointment. But it is incredibly tough to change patterns.

What would you eat typically through the day?

Do you have children, and can you cook “ordinary” food for them?

I'm a bit puzzled by your mention of 'pandering.' My daughter is/can be very restrictive with what she'll eat. What exactly do you suggest I do? Starve her? Force feed her? She's 7. I don't want to traumatise her and put her off food forever, and I don't want her to starve to death. What would you rather your parents had done?!

I’ve never been to a wedding where it’s a set meal. It’s usually buffet so I manage to find something to snack on. If I did have a set meal, I would either order something just to look normal but I either wouldn’t eat anything, or I would have something to snack on in my bag

I do have children yes but me and dh work extra hard to make sure they don’t develop any bad eating habits and it has worked nicely. Dd will eat pretty much anything though ds can be a bit more picky he’s still a good eater

I have thought about hypnotherapy and it’s something that I might look into in the future.

Do you ever try foods that previously you've disliked or not been able to eat?

DS was extremely fussy as a child (not saying you are, I get that you have a recognised condition) and was a nightmare. It was easier to list things he would eat than things he wouldn't. Luckily the things he would eat gave him a restricted but balanced (ish) diet. He was also assessed for autism and certainly used to display some neuro diverse traits. However, as an adult he has started widening his range of foods. For example, he never ate butter or cheese (although he happily drank milk) but has recently started putting butter on bread and will eat cheese if its cooked eg on pizza.

Do you think its the taste or the texture that's a problem?

@CarolEffingBaskin

I'm a bit puzzled by your mention of 'pandering.' My daughter is/can be very restrictive with what she'll eat. What exactly do you suggest I do? Starve her? Force feed her? She's 7. I don't want to traumatise her and put her off food forever, and I don't want her to starve to death. What would you rather your parents had done?!

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

I don’t know but no, once I’ve tried a food (if I even can), if I really don’t like it I won’t try it again.

I mean I don’t eat pizza, cake or stuff like that

Sorry- but I have asked and so have other posters. But I am interested in the limited foods you eat? You mentioned shakes, but what else?

Do you eat better at certain types of the day? Or have certain types of foods that you prefer and can eat more of like cereal?
My DD says she just never feels hungry in the mornings. I wonder like PP mentioned if she has those hunger signals or feelings.

I have never heard of this at all. Thanks so much for sharing your experience.

My DS has this. There is practically no help out there for it due to it being a relatively new diagnosis.

This sounds really tough @Soubriquet, thank you for shedding some light on this condition.
What are you able to eat?

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

Have you or anyone else ever thought that you may be on the asd spectrum? Many people who end up in eating disorder clinics, or have serious food aversions are on the spectrum. Asd in women goes unnoticed a lot of the time, and girls might feel different, not understand things others seem to take for granted, and not know why or piece it together till much later.

@Atalune

Sorry- but I have asked and so have other posters. But I am interested in the limited foods you eat? You mentioned shakes, but what else?

Sorry I missed this

I eat a lot of beige foods.

I enjoy a curry but it has to be sharwoods jalfrezi and no other brand

Today I had a jacket potato, no butter and cheese.

Yesterday I didn’t eat anything apart from my shakes.

This sounds so familiar to me and I am autistic. No meat or fish and it has to be the right food at the right time. I mainly only eat one meal a day and only if it's safe and familiar. I can and do ignore hunger.