When People Think You Have Anorexia // ARFID

When People Think You Have Anorexia // ARFID


We’re balancing my camera on a tiny tripod, on a bag, in a convention center.
– On a rail. This is green tea–
– Oop! [beep] Excuse the production quality because we are at VidCon right now. So, this is my friend Noelle, if you wanna introduce yourself. – Hello. I am Noelle. My channel is Nowhalle, and I make videos about chronic illness, mental health, gymnastics videos, vlogs, music covers, essentially everything but cooking. – We went to a disability networking session and found out that we both have similar eating disorders, so I thought it’d be really great to like, compare and contrast our experiences. What is your eating disorder? – Short story time: This year, when I was at school, I went to the nurse for my anxiety, and I was like, “Hey, I have anxiety, please help,” and since I had surgery over the summer, she wanted me to go to the nurse–
I was at the counselor, not the nurse first– counselor, who told me to go to the nurse and be like, “Update your history!” So I went there, and then we started talking about food allergies and food stuff, and she goes, “I think you’re anorexic.” And then she sent me to a whole bunch of crap. Eventually I ended up at an eating disorder clinic, and they said that I had ARFID. But at school, they kept saying, “You’re anorexic, you need to leave and go to in-patient and deal with your eating disorder.” But mine, it’s mainly anxiety driven. So whenever I’m– I hate eating around people, and I hate certain foods, like I don’t like green food. I don’t know why. Just something in my brain is like, “Nope, we’re not gonna do that.” And then there’s some texture things, but I also have food allergies, so that makes it difficult on top of being a selective eater, cuz I’m like, “Oh, I can’t eat this, this, and this,” and so a restaurant will say, “Oh, have this instead,” and I’ll be like, “No, thank you.” So I normally pack my own things and bring it with me, and so if people ask me, “Oh, can you have this?” sometimes I’ll put it on my swallowing disorder instead and just say, “Oh, I can’t eat that.” – At the end of this video, I’m gonna link to the video that we made for Noelle’s channel where we talk about her allergies specifically, and how that kind of overlaps with selective eating as well. So like, what age did you start having selective eating issues, if you remember? – Haha. Good question. Since my food allergies went undiagnosed so long, I don’t know which was in charge of what habits.
My mom is a “picky eater”, and so people would be like, “Oh, she’s just like you, she won’t let her food touch, she eats food in certain orders– The apple doesn’t fall far from the tree.” Ironic, because I was then allergic to apples. That’s been going on like, basically forever, so since elementary school at least. Like when I was in fourth grade, I refused to buy school lunch anymore. – That reminds me of when I went to sixth grade summer camp and I brought a cooler full of Eggo waffles, cuz I couldn’t eat anything that they had for breakfast, and I just told everybody that I had a super rare allergy to a chemical that was in most foods. So I pretended to have your issue.
– Because it’s easier. – Right.
– “Easier.” – Because people put more credibility on like, physical illnesses, rather than like, “mental illnesses”. – And the thing is, I have a swallowing disorder. Swallowing disorder, eating disorder, they both have “disorder” in the name, so why do people hold it to a different standard? – I was actually tested for the same thing, which I talk about in her video. – It’s called eosinophilic esophagitis.
– I had a barium swallow study done, which is when you swallow stuff that’ll show up on an x-ray, and it came up that I didn’t have swallowing problems, so instead of trying to look for what was actually wrong with me, the response was, “Well it’s all in your head, so you just need to eat normal now.” So, speaking of like, all of those different things like, working together and making it hard for you to eat anything, what are your safe foods?
– I love cereal. Any cereal that is gluten-free– I have a bag of cereal in my bag right now. I like cereal, and I like red fruit. – We pronounce that so different. I was like, “How do you spell that?” and I’m like, “Oh, you mean cereal.” I’m similar cuz like, cereal is like a grain, right. So like, grains, breads… cheeses– basically things that are really mild on the stomach, so like people who have gastrointestinal issues, I have a lot of similarities to that.
– Hi. Are you wary about eating in front of people at all, or…?
– Yes. – …how your food’s like arranged on the plate or anything? – Um, I don’t like food to touch each other. Eating in front of people is weird because when I go out to eat, I like to order off the kids menu, cuz they have the stuff that’s like, grilled cheese and macaroni, and like really simple foods that aren’t like a big mish-mash of different things. Sometimes I get mistaken for a 12-year-old and they give me the kids menu, which is really convenient, but everyone looks at me funny if I ask for the kids menu. – I was denied the kids menu once; it was this year. I was out with my parents, and I said, “Oh, can I have a kids menu please?” and they said no. They say, “Are you twelve?” and I go, “…No?” and they said, “Then you can’t have a kids menu.” I’m like fine, I’m not giving you any money.
– Speaking of eating in front of other people, how did like, your family deal with it? My mom is one of those people who thinks that you can like, think yourself out of depression and stuff, so like she was really concerned about my eating, but she thought that if I just like, thought hard enough, I could get over it. So like, how did your family deal with it?
– Uh, they say I don’t have an eating disorder. Since people kept trying to say that I was anorexic, but I’m not, they’ve decided that I don’t have like any problems with eating instead. But I think that ARFID is the right diagnosis; it’s just not how people perceive it. It’s a sensory thing; we learned that I have sensory processing disorder too, and so there’s sensory stuff, there’s food allergies, and there’s anxiety, which is all sort of cumulating and turns into ARFID. – I forget, did you say you were diagnosed with it?
– Mhm. – Okay.
– It’s on a paper. – I was diagnosed with a– it was called sensory integration disorder back then, but sensory processing disorder, and then I was told that I had a feeding disorder, which I’ve mentioned before. But I wasn’t seeing anyone when ARFID got added to the DSM, so I haven’t been like, “officially” diagnosed with it, but I was diagnosed with like, what it used to be. “Recovery” is kind of like, impossible for you because you have a lot of like physical stuff that works with it too, but like, in terms of like, improving the range of foods you can eat or be more comfortable in public, like what kind of steps are you taking?
– I sort of work on things by myself first, so I’ll try something when I’m not around other people and there’s no pressure in the situation. But I have to be careful cuz of food allergy stuff. While I’d like to say, “Oh, I’ll expand my diet,” I don’t really see it happening. – I’m currently seeing a counselor and a psychiatrist, and the plan right now is like, super low pressure, like my counselor is there for accountability, but she’s not gonna be like, “Oh, you didn’t eat a fruit this month, so you failed.” My assignment right now is to go to a farmer’s market and look around and find a fruit or vegetable that I think looks interesting, and to try the fruit or vegetable. And that’s it. That kind of like, low pressure, hands-off approach really works for me because it like, keeps the anxiety down, and the anxiety makes it like really hard to eat stuff. – Yes.
– I can’t see myself fully recovering either, just because I’m 21, and I’ve had this since I was 2. But I hope, I hope, that one day I can eat like, fruits and vege– like I wanna have a garden, and grow food, and eat food from my garden, and that’s basically the extent of my plans. So, if you want to see more of Noelle and learn more about…
– Eosinophilic esophagitis. – If you wanna learn about that, you can watch that video, which I will put in a box, right here. I’m always bad at ending these, so I guess I’ll just see you next time I talk about my weird eating disorder.

33 thoughts on “When People Think You Have Anorexia // ARFID”

  1. First one, I'll edit this after watching.
    Addition: That was an interesting veiw into the different ways people can experience ARFID. Very well done.

  2. Thank you both so much for sharing. It means the world to me to hear from somebody else who struggles with this. I’m 19 now and I’ve essentially had the same dysfunctional bread/cheese diet since I was 2. It’s so freaking difficult to combat and often feels like nobody takes you seriously. Thank you so much, once again, and good luck!!!

  3. idk whether or not you like ice cream, but the thing about breads and cheeses reminded me that a couple of days ago, at the ice cream shop i work at, (we have a whiteboard where people can write down their favorite ice cream flavors that we didn't have that day, and) someone wrote on the whiteboard "Grilled Cheese."

    we have never had, nor do we ever plan to have such a flavor. and then someone else added the word "Spicy" in front of it. and it got at least 10 tally marks of people agreeing.

  4. I love how you talk about the combination of different things. I don't have ARFID but I do have EDNOS, gastrointestinal issues, likely food allergies, and anxiety, so they all kind of swirl together. I've considered going to either a naturopath or an intuitive eating coach because doctors are just so disappointing and view everything in isolation.

  5. I love your channel! I just found it and this explains a lot! I’ve been picky like my whole life and this past year I’ve gotten so bad with it. Every year I stopped eating more food but this year I gotten so much worse. When I was younger in daycare they made the food. So one day they made sweet potatoes and said if I didn’t eat it I would have to starve! So I refused to eat it and then she was like what if we add ketchup. I still said no, so she forced it down my throat and I gagged so I hard!!! That happened another time when I tried eating chicken, I gagged and she yelled at me 🙁 Also, my mom worries a lot but at the same time she sorta dosnt care and gets mad if I don’t try new food. She has stopped caring and lets me eat the same food everyday now though 🙂 2 days ago my uncle and my best friend made fun of me for it and was like “go see a doctor.” People are like “just try food” I hate those three words smh 🙁 I’m currently living on protein drinks, corn dogs, pasta, rice, and turkey burgers 🙂 I’m a huge snacker too. Recently I went to my friends house and I slept over. They asked what I wanted for dinner and it was so embarrassing and awkward, so they got me McDonald’s which I love and also work at! But it was so awkward 🙁 my whole life if I slept over someone’s house I would either bring my own food or the parents made me something different. Also, at camp in middle school that was 3 days I had to survive on lettuce and that’s it! Because you weren’t aloud to bring food so I ate lettuce for all my meals 🙁 I’m hoping to seek treatment soon because I’m pretty sure I’m anemic because I faint a lot when I stand up from laying down too long or I blackout and get really dizzy 🙁 Thank you for this Channel and I hope we can both get so much better and recover!! 🙂

  6. I have ARFID but well before I'd ever heard of it, people in school thought I was anorexic. I have some pretty bad anxiety disorders, and when my anxiety is really acting up, my appetite disappears. School was a major source of anxiety for me, so I would often skip lunch, or if I did eat, it would just be a soft pretzel, and this started a rumor that I was anorexic, which I never have been. The nurse (who was also my best friend's mom) called me in to talk about it, and I fibbed a bit, saying I don't like to eat in front of large groups (Which I actually don't mind, provided I'm with people I know well) and that I would eat when I got home (Which was true). She accepted this explanation but I don't think she was fully convinced until I had a group project with my best friend, and I went to work on it at his house. We ordered pizza, and she saw me devour two (plain) slices and then sit with Mike (my best friend) working on the project for an hour, so I clearly wasn't anorexic or bulimic. Not that the students stopped saying I was anorexic, but at least the staff wasn't on my case about it. So that was a fun four years.

  7. My doctor sent me to an eating disorder clinic and they told me i have arfid, when i went back in and told her what they said she still tried to have me hospitalized because im “Anorexic”

  8. Was wondering… for ARFID…. has any doctor suggested getting a G-tube? I’m not a doctor but was thinking… if you had a G-tube you could make fresh juices and smoothies to give your body (without the texture/tasting)… i would think it would give you the nutrition your body has been craving and get you on the road to great health.?

  9. I didn't know that I had ARFID until a week ago. It's so enlightening to see that other people experience the same thing as me. Someone should schedule a picky-eater picnic where everyone brings there own food and nobody has to be selfconscious eating in a social situation

  10. Omg this happens to me so much but people don't say it directly i just know lmao. I was on a camping school trip (for 3 days) and we had beans and hot dogs. I refused to eat anything on my plate and my best friend (who now understands what ARFID is) kept on telling me "you need to eat". I also have depression and she knows that so that probs made her think i had anorexia even more.

  11. I have an anxiety disorder and have numerous food allergies. I am allergic to nuts, mushrooms, turkey, eggs, soy, and shellfish. I literally won’t eat sauce unless it’s white pasta sauce. I hate red foods and i don’t like very strong textures or smells. I HATE when food touches and I hate spongey foods. I get so scared that if I try something new I’ll hate it and then I think about how gross is was for the rest of the day

  12. I feel soooo connected here!! I have Arfid, anxiety, dysphasia, and a phobia of choking. Everyone said it was in my head and well, I have physical and mental illnesses. I am overjoyed rn to know others out there understand❤️ I hope y’all have an amazing recovery.

  13. I hope this doesn't sound rude.. but y'all look like you could be siblings. Almost twins. Maybe it's the hair and glasses

  14. I really feel you on when physical and eating disorders overlap, it makes everything SO much more complicated! I've had severe anorexia, but is partially recovered now (weight and eat normally) but still have my thoughts left. I also have gastro-problems which most likely is gastroparesis (slow stomach emptying) so I need to eat very special to combat that. Lastly, I take a medication that makes me super hungry! 
    So, I wanna eat low calorie for my past anorexia, I have to eat small amounts for my gastroproblems, but I'm so hungry I want to eat a lot of volyme and sweets all the time. No matter how I eat, some part of me is suffering. Right now I'm being kind to my stomach and eating little, which means I lose weight so my anorexia is happy, but I'm hungry all the time and I can't continue to lose weight forever. 
    Ugh… I hardly remember a time when food was uncomplicated. My anorexia started when I was 13-15 and now I'm 31. I will probably never have a normal relationship to food again.

  15. I'm 22 and recently had to drop out of University because of my diet. Flash forward to yesterday and it turns out I've had ARFID since I was 2. It is so, so validating to know that this is not just in my head after 20 years of feeling broken. I'm really determined to get better, and I want to thank you for making these videos!!

  16. My brother has ARFID and he only eats about 5 different foods. It always annoys me when people say “oh he’s just a picky eater” ugh! 😑

  17. Hi everyone, we are a team of 8 French students in food process engineering working on eating disorders. In order to finalize our study, we are looking for people with a(/an) (bulimia/anorexia/ARFID) condition.

    Thus, if you are suffering or think you are suffering from this disorder, this survey is made for you ! (Please if you are not diagnosed answer to the first question as "none of them")

    https://forms.gle/NEXPnoCMX3ywfYnF8

    If you need help to answer any of these questions don't hesitate to contact us !

    Have a good day!

    Lucille, Coline, Lucille, Victor, Maxence, Selma, Gaston and Clémence

  18. I was diagnosed with anorexia, but was told i'm nothing like an anorexic… They literally said I have a different disorder but they can best treat me if they call it anorexia. I want to get tested for ARFID and hopefully I don't have to call it anorexia anymore.

  19. I'm so glad that i came across this channel, i have been to my doctor with what i found on ARFID and they said that they aren't a professional in that area but by the looks of it it is ARFID. I'm 20 and I don't know anyone my age with this that i can talk to and they understand. I've been "fussy" with food for as long as i can remember and avoid and social situation that involves food. I have anxiety that also is involved with food. It feels isolating when people around me invite me out to a meal, I find any excuse not to go.
    Reading these comments to see i'm not the only one that feels like this, I'd love to talk to someone my age with ARFID if that's okay ummm i guess i could leave my twitter if anyone wants to reach out, i'd appreciate it. Its @chloejadeyy

  20. I’m a grown woman and I always though and was told that I was just being picky and that I should just “expand my palette”. I’m very sensitive to textures. I basically don’t like any raw vegetables or fruit. I will only eat some of them cooked or blended. Onions (which are in everything) are my kryptonite. And I will literally get sick if I get a chive in my mouth. This has all lead to some abnormal eating habits like straining the seasoning for ramen and straining the vegetables out of pasta sauce.
    The only symptom I do not have is being underweight. I’m actually overweight because all I eat are carbs. 🤷‍♀️
    Thanks for sharing yourself with us. It’s nice to know that I’m not just being a baby or picky. It’s so much more than that and I’ve always known it. If eating something or the thought of eating something makes you cry, it’s more than just being picky.

  21. Isabella Stephens

    wow, I just found out I used to have that, it didn't last long because my parents ended out shoving food down my throught. I had really bad anxiety from my parents split and also how my dad was fighting my mum and threatening court and my step mum bullies me. it went on for 4 months, and then I started to get it back. I couldn't swallow anything solid for 4 months. I remember spitting out popcorn (that I couldn't eat) into the bin at the movies, I still struggle to swallow sometimes but anyway I'm happy I figured that out <3 by the way it happened in the summer holiday, thankfully.

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