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Faces of ARFID Series, Rosie


Thank you to Rosie for being on the blog! Rosie is from Northumberland, England and is 22 years old. She has ARFID. Here is what she would like you to know about what it’s like to live with ARFID:

What are your limitations with ARFID (food/friends/social activities etc.?)

Never went on school trips that were over night, never go out with work friends for meals like the annual Christmas meal. Never meet up with friends for food.

List of safe foods:

Chips, Peas, Carrots, anything bread like (Bread, toasted muffins, crumpets, bagels) SMOOTH vanilla or strawberry yoghurt, pasta and smooth tomato sauce, spaghetti hoops, crisps, biscuits, breadsticks and just in general anything plain with little or no flavour.

What steps have you taken to try to get help?

My mam took me to the doctors on many occasions when I was younger asking for help as at the time it was just called being a "picky eater" and they kept telling her it was a just a phase and I would "grow out of it." Which never happened.

If you have had treatment, what kind of therapy/treatment have you received?

When I was about 16 I went to the doctors myself asking for help and they referred me to a nutritionist. After seeing how frightened I was about trying new food they then referred me to a psychologist. She helped me understand that I wasn’t a picky eater and helped me understand why I was afraid of food and gave me tips on how to cope with this fear.

What is the most frustrating thing about ARFID for you?

Not being able to do normal things like enjoy a meal at a restaurant with friends, family, or work colleagues. If I do go to a restaurant, I’m embarrassed that I can’t order very much. If I do order anything I never get a single plate, it’s always multiple little side dishes. Even that in itself is embarrassing and not "normal."

What do you wish others knew about ARFID:

I just wish more people knew about it. When you say you have an eating disorder many people just instantly think you don't because you're not thin [so you don’t have anorexia]. I want people to know that an eating disorder is not just anorexia. I wish people wouldn't laugh when they find out the limited food I eat and I want them to understand I don’t want to be like this … none of us do but it’s a general fear and it's not pleasant.

What words of encouragement would you offer a person newly diagnosed with ARFID?

You're not alone. I thought I was one in a million and only in the last year or two I've realized there are so many people out there with the same "safe foods" as me and the same thoughts and feelings toward food as I have.

Do you have anxiety/depression because of your ARFID. Are you generally happy with your situation? Can you share a couple sentences about how it feels to have ARFID?

I have extreme anxiety with the thought of trying new food. I remember a few months ago I was leaving a job to go to a new one and everyone at work thought it would be nice to order pizza for everyone. I said I would try a slice of pizza. I sat for an hour just staring at the slice and I actually started to cry because I just couldn't face trying it. I am not happy with having this condition and pray that one day I can be normal. It’s just the most awful and embarrassing thing. Knowing that I probably can’t go and explore parts of the world because they might not have anything for me to eat is just horrible. Worrying that I may not be able to have children because let’s be honest … I don’t know what a real meal is?! What would I feed them?

What do you want society to know about the stigma of ARFID?

That it's a real condition, and we're not just being picky and awkward. Don’t laugh at us because we don't like a lot of food. Just try to understand and put yourself in our shoes.

Is there anything else you would like to add—anything that’s unique to your situation?

I just want to say that I've never been officially diagnosed with ARFID. I've always thought I was picky. But after treatment (which sadly didn’t change anything) I was doing research and discovered ARFID and I just KNEW instantly this was what I had. My mam tells me that this started off when I was about two years old. Before this time I ate anything and everything! Then one day I choked on some meat because I had an infection that created a huge lump on my neck making it hard to swallow. After choking I had to have only smooth food and gradually build up to having solid food again.

I don’t remember ever being normal I just always remember being terrified of new food and if I ever tried new food just automatically gagging and retching, which is so unpleasant. Just from them on just being terrified to try new foods.

My psychologist told me that since I've had years and years of just plain "safe" foods that my taste buds are sensitive. The slightest bit of flavor is really strong me for me compared to anyone else. I remember trying jam when I was 16 and the faces I pulled were hilarious! You would think I was sucking on a lemon because to my taste buds, the jam was so strong!

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