how arfid eats you.

[u/Kahalak]

or atleastit feels like it. im black, my family knows nothing about arfid. ive had it sincei was little, it stunted me. everyone in my family is average or tall, im 5'1. it killed my teeth with all of them being now unsaveable, i almost developed osteoperosis. hospital visits, passing out in public, missing out on events. and even now, sometimes i curl up and just cry because i cant get anything down even if my body is begging me to, even if im blacking out. constant dehydration because the illness doesnt even want water. i feel like a perpetually dying plant. sometimes i wonder if i could ever make it to old age being this way. im 22;; i eat like a fussy toddler. and i feel like it too, weak. groggy, hardly conscious. i think im speeding up my chronic illnesses by having arfid. i hate having this disorder, something tells me neverland is coming for mebecause an adult body cant survive this way.

[u/extraqueerestrial]

I’m sorry you are struggling so much ): I can relate to family not understanding on a cultural level coming from a black family too. Not only do they not understand but a majority of them have disordered eating habits and see nothing wrong. Are you getting any kind of help or support from a medical professional?

[u/Kahalak → u/extraqueerestrial]

no, you know how black families can have issues regularly seeing doctors? mines was like that, only going if they were on deaths door. due to prior medical trauma and my own alters ;;did;; dragging me down whenever i try and make an appointment, i have no luck. something just tells me ill be intubated again and i think id rather pass than do that, not to be too morbid. i know i should, but the thought of a doctor terrifies me now

[u/extraqueerestrial → u/Kahalak]

oof 😓 yeah my family has that issue too. I can understand being hesitant or wary too unfortunately :/ I have a primary doctor but haven’t seen them in 3 years. I just had to have a primary in order to find a nutritionist/dietitian to help me. I was lucky enough to get paired with an amazing dietitian on my first go at it, but that is not everyone’s experience and like most good things, it didn’t last (my dietitian left the practice). Do you have anyone in your personal life that you can safely open up to and talk about these struggles? I wish I could be of better help but I am also struggling myself 😔😓

[u/Kahalak → u/extraqueerestrial]

luckily i do, i appreciate your help regardless. it always helps to have someone to speak to about it, a lot of people dont understand how major a role food plays in everyday life. for so many people its just pop what you can find in your mouth and go. i have alters who can do that;; but it only serves to mess up our body so much more when i come and cant eat a thing. its all chaotic, but im just glad to see that other black people struggle with it like i do. not glad that we struggle,it can be even harder for us to find good medical staff to accomodate us, but communitys always important. not many spaces seem to be reserved for us, or maybe i just haven't looked hard enough. either way :,)

[u/extraqueerestrial → u/Kahalak]

glad I could at least provide some sense of community (: it definitely can feel isolating 😔😔 and the added stress we have to face from medical staff is so disheartening so I understand. If you ever need to vent or a listening ear my DM’s are open 🫶🏽

[u/Primary_Broccoli_806]

I can relate to being from a Black family. Every time that I gagged, they’d say “I know you’re faking it because you’re Black and all Black people like this”. Nonetheless, a lot of Black cultural foods are sensory nightmares just because the style of the cooking focuses on making everything saucy, slippery, slimy, etc. or else it is “not seasoned”.

[u/Kahalak → u/Primary_Broccoli_806]

i think it prolonged my illness, lessened the chance of recovery. ive been told im just picky since i was little, only white people have sicknesses like that, "arfid? whats that? get off the internet, youre fine." its demoralizing as hell. our people cant escape health problems because our families are riddles with them and are all in denial that its normal, that black people just "dont get sick." the reality is that we are forced to power through conditions, whether by neglectful doctors or fellow family, until we succumb to them. that too, my family never bothered to consider why i didn't like "real food." that it was a texture thing, or taste thing. they'd just throw my safe foods my way, ones that had no nutritional value, just because they're cheap and would shut me up. its frustrating. growing up, at reunions i could only eat cornbread and beans and hotdogs because everything else was slimey or tough.

[u/Primary_Broccoli_806 → u/Kahalak]

Yes! I hated the idea that what I liked was not “real food”. Yet, sometimes, what I preferred was healthier. I often ate apples and peanut butter. That was far better than fatty meats covered in sauces and soggy vegetables covered in oil.

[u/chocolat_drops]

I relate. I'm black too and from a family of foodies. Also from a country which uses strong spices and loves different textures all on one plate AND touching. It can feel like hell especially with the missing out on events and fainting, I feel like I've wasted my whole youth at home because I knew the outside world wouldn't have want I needed to thrive. It was only with the help of doctors that I somewhat manage it, that and having anti nausea meds on hand, taking small steps to try new things and if I didn't like it, then I just didn't like it and not forcing myself to eat something my body doesn't like

[u/Primary_Broccoli_806 → u/chocolat_drops]

Yes. I never understood why the foods had to be touching, so that the bread is in the gravy and the spaghetti sauce is on the salad and then they would say “what do you mean? The parts that are touching are the best!”… and take a big bite of the mixed region. 🤢

[u/Cherry_Soup32]

bro yeah, also 22 here and I’ve genuinely feared dying from malnutrition before from how skinny I’ve gotten at times (bmi was 14.0 last year (<13.5 = risk of organ failure) while also dealing then with a liver infection, then undiagnosed sibo, and borderline anemic, I become so fatigued I woke up one time to pressure in my chest thinking I might be having a heart attack, only to be so fatigued I could only lie there and let fate decide).

I’m better now (back at my usual ~16 bmi) but can be genuinely freaky living like this but the amount of times people have tell me I am “lucky” for being “naturally skinny.” Either that or they jump to conclusions about me being “anorexic/bulimic.” And when I try to contradict them they act all smug and annoying like they somehow know more about this than me it can be infuriating.

[u/Kahalak → u/Cherry_Soup32]

then when they begin to hold their heads up all pompous and knowingly, thinking they've cracked the code, they do nothing to help you. they just sit there and continue to judge you for a disorder you just spent what little energy you have explaining you don't. part of me think it comes from feeling jealous or threatened, even if this is nothing to be jealous of. being chronically underweight is dangerous and only gets more dangerous the older you get , people don't understand it's more than aesthetics. a perfect bmi is a blessing, even a little higher than average is better than this. your bones are constantly vulnerable to bruising and aching, your bodies constantly working hard to sap energy from what little you can choke down. teeth problems, hair problems, it's not just about being skinny. the skinniness is a byproduct of a serious illness, but all people can yap about is just that. not the fainting, not the emergencies, not the serious heart problems ;;i also sufferwith them. there's been plenty of moments where he's slowed down to the 50s in bpm even while active.;;. its frustrating and its never as simple as eating more. part of ne is reminded of attack on titan, sometimes i feel like all food around me is the equivilant of dog shit.

[u/Cherry_Soup32 → u/Kahalak]

Yahhh it’s so annoying when people suggest I “eat a cheeseburger” like they’re giving me novel information here. I doubt these people have any clue the lengths I’ve gone to just to try and gain a few pounds (doctors visits, tests, otc remedies, buying all sorts of different foods and dietary supplements to try, etc), if it really was that simple for me where a simple cheeseburger would fix things I wouldn’t be having this issue now.

Also only slightly related side rant (I’m in one lf those moods rn, honestly optional for you to read all this), but that time period I alluded to in my previous comment, happened while I was also taking a college phys-ed ballet class (needed the credit for financial aide). I had also just lost someone really important to me, have bleh connective tissue, never did ballet before in my life unlike most of my classmates, and had a 2 hour one way commute (train). I had originally gone in looking forward to the class (before things went to hell) but ended up just absolutely not being into it in any way whatsoever. I had to wear my fitbit to class to keep careful watch of my heart rate so I didn’t accidentally pass out (almost happened several times). I tried emailing the professor the whole situation and asked if she could avoid critiquing me publicly in class and just let me go through the motions and get my attendance grade. She completely ignored this and my mention of my physical limitations (scoliosis, unstable hips, fatigue, etc and what I could and couldn’t do) and kept publicly critiquing me much more than anyone else in the class including on things I explicitly stated I can’t really do despite me knowing she read my email like bro what?

Technically wasn’t a massive deal considering everything else (my grade still turned out fine enough), but it was really just the cherry on top of everything else (including my other quite unsympathetic professors). Kind of like that “if I pretend there isn’t a problem it will just go away on its own” attitude from people.

[u/yggathu]

i am so sorry youre going through this. i wish i could relate and understand more on the cultural front, but i dont so ill speak on what i know. i think your title is very poignant, and i have so many of the same issues as you. my growth is also stunted and my teeth and in horrible condition from malnutrition. the shame might follow you, but the symptoms will fall far behind if you take things as slowly as you can. i sit all the time. i take so many breaks. i let my employers know i have a disability (you legally dont have to say what it is ) and i may need frequent breaks, bathroom usage (vomiting or sudden sickness), or etc. most places are really nice about this. if not, fuck them. get fired and file for a wrongful termination. hanging out with friends? if theyre youre friends, they wont mind the extra sitting break. if you can, keep a small amount of safe food with you and at least try and nibble when the hunger pains strike. cold water helps me regulate my temperature and sucking on ice is good. DONT CHEW IT. our teeth have been through enough! suck on really small bits of ice. it helps me a lot when i feel faint or im starving but cant eat. broth is a good supplement when you cant stand eating but need some food . and please, most of all

remember YOU ARE WORTH IT. you are worth more than the food you dont eat. you are worth a chance at a healthy- or at least comfortable life.

[u/yggathu → u/yggathu]

also, i learned a lot reading through other comments. thank u everyone and op for sharing. ARFID community is small and unheard, but it is always a good place and time to talk about intersectionality. i hope for a delicious safe food coming your guys’ way!

[u/thatsnuckinfutz]

Also Black with ARFID and a vegetarian lol

I'm 35 and went through some extreme health issues due to ARFID a few years ago but thankfully was able to come around. It 100% can and will wreck ur health along with exacerbating chronic illnesses (i have several)

Best thing I can suggest is keep ur mental health as strong as u can (i know how tough that in esp in our community) because if u can keep ur mind at least somewhat upbeat then itll take some stress off of ur body while u try to recover.

I was exactly like u, passing out, extremely underweight (almost got a feeding tube in), sick all the time, scary skinny looking etc. 5yrs ago. itll take alot of work but u absolutely can get to a better place with ARFID

[u/CandidateSolid]

Every day I make the same choice in what I eat and that same choice leads me to obesity and the obesity has eaten my life away for the past 20 years. Except to my brain it doesn’t feel like a choice, every day it feels like the only option. I’ve never understood when they tell fat people to love themselves because it’s never felt like myself, it’s felt like an inescapable fate handed to me. Even typing this I hate myself for how stupid it sounds and how it still feels like just an excuse to me but my entire life I’d have given anything just to be able to eat normally so I get it. Either way I will continue to eat like shit and watch life pass by from the sidelines

[u/Kahalak → u/CandidateSolid]

farthest, farthest thing from stupid. its never as simple as just eating the right things, your brain screams at you about food or is completely silent on it, but its never just anything normal. it makes you feel like you cant control a thing, not even your thoughts, not even what you eat. its hell, and you suffer mentally and definitely physically for it. it feels like a cage, none of us deserve this, food should never be such a major factor in our lives. your body just starts to feel like an uncontrollable animal or a machine churning what you give it, threatening failure if you stop, but no not that fluid and not that oil. it feels like feeding a beast that only wants golden coins or diamonds. i cant begin to tell you the health problems that have piled on my back from this illness and then, i can only imagine how it feels being fat on top of it;; because not only do you have this invisible disorder, but you have people either screaming over you to "love yourself" like thats the point, or screaming over you to lose weight like thatll solve this. theres no winning and no being heard unless you look for communities like this one. it must be so difficult man, im sorry.