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Faces of ARFID Series, Amanda


Name: Amanda K., 21, from New Jersey

Amanda is a junior in college in New Jersey studying journalism, and she has ARFID. Any time she gets a chance, she will write about ARFID in her classes. She is very passionate about sharing her knowledge about this eating disorder. “I spread the word about ARFID just about every chance I get. When people comment on how ‘picky’ I am, they don't realize the conversation they're in for.” She also takes a Radio/Podcasting course and has recently done a podcast about ARFID. “Through my podcast, I was able to tell my own story and that of a close friend, which were really important components,“ Amanda said.

She and I got to know each other online when she discovered a blurb about my novel Sad Perfect on Twitter. She said, “I did some research, read the book synopsis and immediately freaked out. ARFID and a YA novel? Two things so close to my heart? Ah! It was magic. I tweeted you to share my excitement and the rest is history!” So I’m thrilled to have Amanda on our next installment of Faces of ARFID!

At what age did you realize you had ARFID:

My eating habits have been the same, according to my parents, since I was born. While they were able to get me to try different foods while I was an infant, by the time I was a toddler, I would pretty much only eat chicken nuggets. Though I’ve always known that my eating habits were rooted deeper than picky eating, it wasn’t until my first year of college that I decided to research my symptoms and discovered ARFID. I was 18 at the time.

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

I have blocked entire food groups out of my diet. For example, I eat no fruits and no vegetables. Foods that my family and friends love to eat such as salads, sandwiches, and Chinese food, I can’t go anywhere near. My main turn-offs with food are anything that has a wet texture or anything that has a lot of food mixed together. I will occasionally eat yogurt, but not if there are chunks of fruit in it. I can eat steak and mashed potatoes, but I must eat them separately. If they are touching, I can’t eat them. I also find it extremely difficult to eat with groups of people that are eating foods that I do not consider “safe.” Eating with family is manageable. They understand how I eat and are not insulted if I don’t join them for dinner when they order Chinese food. Eating with friends is a little more difficult. They understand what I will and will not eat, but they’re easier to forget that I have a hard time even looking at/smelling the food they're eating. The biggest limitation I have with ARFID is eating at events like parties, corporate events, barbecues, etc. One day last winter my job had a conference meeting for all the Human Resources managers. I felt out of place to begin with. I had never before attended a conference, I was nervous to speak to such a large group of people, and I was, by far, the youngest manager there. Just as I was starting to feel at ease with the conference, they brought out the lunch menus: sandwiches and burgers only. I reluctantly circled the closest thing that resembled a plain cheeseburger, and then nervously counted down the minutes until lunch. When they finally brought everyone’s food in, I could barely hide my disgust. The smell of sandwiches and gourmet burgers made me feel like throwing up. People were throwing napkins on the table, dropping lettuce from their food, and I could barely stand sitting there watching it. Not only was my body physically reacting to the smells and sights I was around (I began gagging and felt like vomiting), but I had a major panic attack, feeling as though everyone was staring at me while I picked at my food and reacted strangely to theirs. I ended up running to the bathroom, calling my mom crying, and not going back until lunch finished.

List of safe foods:

My diet is almost strictly junk food. I live off of pizza, chicken nuggets/tenders, cheeseburgers (just the bun, burger, and cheese, and I typically only eat them at home. I have trouble ordering them at restaurants), pasta with butter, grilled cheese, soup (just chicken broth with plain noodles), and a whole lot of junk food (chocolate, candy, chips).

What steps have you taken to try to get help?

I have actually done nothing to get help, and have never actually been properly diagnosed. My doctors have noted that I have a “food aversion” but I’ve never really mentioned ARFID (though I plan to do so during my next visit). In some ways, I feel content with my eating and have no desire to change it. I’ve become more open to trying new foods over the years, and though I don’t see myself adding fruits or vegetables to my regular diet anytime soon, I do get tired of eating the same things. I have a desire to try new foods and explore my options, but I know that’s much easier said than done for me. I do feel concerned at times that I am lacking nutrition, but overall, I feel healthy and happy, so I don’t have too big an urge to get help.

Do you plan to get help for your ARFID?

Crazy as it sounds, I really can't see myself forgoing any type of therapy. I'm content with pizza and chicken nuggets! My eating has gotten better over the years, and I have enough variety to not completely hate the food I eat. I know I could benefit from some more nutritious foods, but I take vitamins once in a while, which I hope will balance everything out.

What is the most frustrating thing about ARFID for you?

The most frustrating aspect of ARFID for me by far is getting tired of eating chicken nuggets and pizza EVERY.SINGLE.DAY. Some days, I just feel so, SO hungry, yet no food seems appetizing. A few weeks ago, I was feeling this way and I decided to take a trip to the food store. I walked up and down every aisle, hoping I would find some food that’s different than my norm (something with some substance, something other than bread!), but I found nothing. I started tearing up in the ice cream aisle because I was so frustrated. Thankfully, those days only happen once in a while, but when I do feel that way, ARFID feels like the most frustrating thing in the world.

What do you wish others knew about ARFID:

I’m sure my answer will be the same as most people that answer this question. I wish people knew that we simply cannot choose what foods we can eat, and which foods we can’t. I’ve always struggled to accept ARFID’s other name, “selective eating” because I feel as though it gives people the wrong idea of our struggle. We don’t necessarily “select” our safe foods. As we get older, we certainly deem some food more safe than others, but what caused me to choose chicken and pizza from a young age? I have no idea. I also wish others knew that ARFID is experienced by people of all ages! From some research I’ve done, it seems as though much of the focus on ARFID deals with small children, but I’m living proof. Twenty years old, and I still have ARFID just as much as I did when I was five!

If you met someone newly diagnosed with ARFID, what words of encouragement would you offer that person?

I don’t know if I can really offer encouragement, because in a way, being properly diagnosed with ARFID is encouraging enough! It sounds kind of strange, but ARFID is a pretty lonely disorder. It’s rare, and most people can’t relate. When I found out that ARFID even exists, it was one of the biggest moments of relief I’ve ever felt just to know that what I was experiencing was valid and not made up in my mind. Also encouraging is the new research being done, and bigger awareness of our disorder. There is still a lot of work to do and much research to be done, but seeing a newfound interest in ARFID always leaves me feeling hopeful.

What do you want society to know about ARFID?

I would like society to understand, or at least try to imagine, what people will ARFID face. Constantly, I hear friends and family say things like, “Don’t you get tired of eating the same foods every day?” and “Wow, you’re lucky! I wish I could eat pizza every day!” Let me be blunt. Yes, obviously I am tired of eating the same meals daily. Sadly, I can’t change that by just deciding to try something new. And no, I’m really not lucky. In no way can I say having ARFID is a magical, exciting experience. Nothing lucky about it. When I hear comments like this, ARFID feels invalidated. It’s as if the person I’m speaking to is completely disregarding the fact that it is a classified eating disorder, and is reverting right back to the idea that I am simply a picky eater. I would just like society to understand that ARFID is real and affects real people. We’re not making it up!

You can listen to Amanda’s Podcast about ARFID here: https://soundcloud.com/user-402723920/living-with-arfid

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