#also please don't hit me with the “oh it's an eating disorder” thing...last i checked you're not born with eds

[spectrumlife99]

A more personal story about a big struggle of mine...food.

I've talked a little bit about how I hate food before on this blog...but now I think it's time to go in-depth about it...even though I usually HATE talking about it, and I'm really nervous and anxious about making this post, but I'll do my best.

Ever since I was little (like, two years old when I was taken off the baby bottle and had to move to solid foods, which, actually, I have NEVER drank milk since the baby bottle was taken away because it was nasty and I no longer needed it to survive...and I STILL to this day hate milk and find it gross), I have had MAJOR sensory issues with food, causing me to be extremely picky and particular about what I eat. I have issues with the look, smell, taste, texture, etc. I also hate things on my plate touching each other, and as a kid I had to have everything on separate plates/bowls because I wouldn't eat if anything on the plate touched each other. I still hate that to this day though, with a lot of work, I have been able to move past the "everything on separate plates/bowls" thing. I do still try my absolute best to keep everything a good distance from each other though.

I am also very particular about even the same types of food. For example, I only eat certain specific brands of certain specific things, and if the brand is wrong, even if the food itself is the same, I will always notice just by smell alone, and refuse to eat it. If the brand is not the safe brand, I will not eat it. If we don't have a safe food or the right brand of safe food, I will choose to go hungry rather than eat, because it's just too much for me to eat a non-safe food/brand. My diet is extremely limited...I would say that 99% of all foods in this world are way too overwhelming for me, and I know for a fact that I can count the number of foods I will actually eat on my fingers...and everything on that list is bland, except for a couple VERY SPECIFIC flavors of VERY SPECIFIC kinds of candy. It has to be bland because I can't handle anything that's spicy (even if it's only a tiny kick or a pinch of seasoning, it will still feel like my mouth is burning and my stomach will start feeling bad), I can't handle bitter things (bitter things will immediately trigger the gag reflex), and I can't handle sour things (sour things, aside from being overwhelming in taste, make my mouth really irritated and that really hurts), or things that are too sweet (I can handle mild sweetness but if it's anything even the slightest bit over mildly sweet, I can't handle it, it triggers the gag reflex). If I could survive without eating, I would never ever eat a thing because I hate food and eating so much. I usually only eat one meal a day, that being supper, because my family always makes sure to have safe food for me in the house for supper specifically. And if we have takeout or go to a restaurant, we always make sure that the restaurant has one of my safe foods beforehand, otherwise I won't eat.

I have gone multiple days in a row without eating anything, because there was nothing safe around. This was back when I was in my early teens in the psych hospital. I was there because I needed a medication adjustment, they had to take me off everything and put me back on everything again slowly, as well as change some of the meds because I was struggling with severe anger issues and aggression, there wasn't a day that went by without me exploding on someone and physically hurting them or myself back then...so I was in the psych hospital for about a week and a half. The teen ward was like a dorm at a university or something, there was a common area, and two long corridors of rooms, with the girls on one and boys on the other. Now, the food situation there was...less than ideal... especially for someone like me. We had a choice of what we wanted to eat, but to actually GET to choose, we had to wake up at the designated wake-up call time...which was always really hard for me since I am not a morning person and I also had nightmares that woke me up and made me really anxious and panicky basically every night. So, as you can probably guess, I always missed the menu choices, meaning I always ended up with something random. That was not good, because it was almost always something that wasn't a safe food. The worst part of it was, there were multiple days in a row of this, and by the fourth day in a row of me not eating, one of the nurses did the worst thing possible for a person with severe food sensitivities...the nurse force-fed me...and continued to do so everyday after that. It was like torture, and every time after being force-fed by the nurse, I would go right back to my room, head right to the bathroom, and proceed to get rid of it by gagging myself on purpose to make myself throw up. The food sitting in my stomach made me nauseous as it was already so I just had to get it out of there so I could feel better. I never told anyone about it though because during my entire week and a half there it was so traumatic I was basically rendered mute, barely saying a word to anyone. I know that they were just worried about me and wanted to make sure I survived while I was there, but they definitely could've done it less...aggressively...

This wasn't the first time I was force-fed either. As a kid, with my OT, I did a type of feeding therapy called Feeding Team. It was supposed to help me learn to try new foods...but it didn't work. Now, the person who force-fed me there wasn't my usual therapist. My usual therapist never did that, she just sat there with me and reminded me that if I didn't eat the food of the week, I wouldn't be allowed to do all the other stuff...the stuff I liked doing in OT. Multiple weeks just consisted of me just sitting there the whole time because I just wouldn't...COULDN'T eat. But my usual therapist never threatened to force-feed me or anything like that. So how was I force-fed there, then...? Well...it was when my usual therapist wasn't there, and I had a substitute...a couple substitutes weren't the most patient and after it became clear I wasn't going to eat, they would pick up the fork or spoon, gather some of the food on it, and shove it into my mouth. I would immediately go running to the bathroom after that and proceed to, once again, get rid of it all so I didn't feel sick anymore with the food sitting in my stomach like that.

No one, absolutely NO ONE in my family knows that I've been force-fed before. They also don't know about me purposely getting rid of the food I was force-fed every time. I have only told my talk therapist and a best friend of mine who understands what having food sensitivities like this is like...and only brought it up in the first place because I've been thinking about this for a while and having nightmares about the force-feeding where I wake up feeling sick and like I need to get rid of the food I was force-fed in my dream...so it's been really bothering me a lot lately. And I'm one of those people who HATES anything to do with throwing up. If someone around me is sick with a stomach bug or flu and I hear or see it...I freak out and have full-on panic attacks over it, and when I have the stomach bug or flu myself, I try to keep everything from coming out as long as I possibly can.

And food unfortunately is something that can make me really sick and trigger the gag reflex from just the look and smell alone...which is why I always stay away from the kitchen when my family is eating their meals, and waiting until everything they had is all cleaned up and put away before I can finally have my own safe food for supper...I do this pretty much everyday, as it's very VERY rare for my family to have something I can eat alongside them for supper. The only thing that really comes to my mind that I eat with them is pasta...my mom makes it plain and makes the sauce separately because she's allergic to tomatoes and I don't like sauce. I completely cover my plain pasta in the (what I like to call) "cheese salt" type of parmesan cheese because that way it tastes better and it's not greasy. One of my younger brothers (who also has some food sensitivities, but he's not nearly as problematic in my parents' eyes as I am because he eats a lot more things than I do) does the same thing, and we often fight over the parmesan cheese because of it.

I used to have to sit at the table with everyone during holiday meals, which felt like torture, but now I don't have to do that anymore because I just can't do that without feeling sick and losing my appetite at the sight and smell of all holiday food. The only thing I eat on holidays is plain rolls...which is just bread. Everything else is way too much for me. So I wait for everyone to finish and clean up, and then I have a safe food, just like basically every other day.

On Easter yesterday I didn't even eat supper at all because I just wasn't hungry. I have a hard time noticing when I'm hungry or not, so that plays another part in me not wanting to eat, because I don't feel like I need to. I've been put on an appetite stimulator medication because my one meal a day is not enough for my family and support workers and it makes them worry...even though I'm totally fine with one a day but that's just me. It worked for a while, it didn't change anything I actually ATE but it made me feel hunger a bit more...though now it's stopped working and I'm back to one meal a day. I get really tired of my family constantly judging me for being picky, berating me for never eating anything, telling me I'm being difficult, and saying things like, "There are people starving out there, you should be grateful for what you have and eat!" When they say those things, it does not help at all! It instead just makes me really upset because I literally CANNOT HELP IT! I didn't ASK for this, I didn't ASK to have so many food sensitivities...and it drives ME just as crazy as it drives THEM! I wish I could eat more things so they wouldn't get so mad at me all the time but I just CAN'T!

You know how people will expect you to just toughen up and eat what's in front of you...? Yeah...no...that doesn't work for me. If there's nothing I can eat, nothing that's safe, I will not eat a THING until I have a safe food in front of me again, even if it takes multiple days...the longest I've gone without eating was four days. I am so glad my parents don't force-feed me though, like the nurses at the psych hospital or the substitute OT person did...because that means I haven't had to intentionally make myself sick to get rid of the things I was force-fed in about a decade now. I am so afraid to tell my family about those incidents because they have never heard anything about it from anyone at all and I always keep traumatic memories and things that happened to me to myself for years at a time, until I can't take it anymore and I just break from the stress, but I am working on it now with my talk therapist, so I hope I'll be able to say something eventually.

Anyway, I guess what I want to say is, anyone else who's autistic and struggles with food sensitivities, I see you and I feel you. You are not alone. I used to think I was alone in this until I met my best friend who struggles with this stuff too. It was so validating for me to finally have someone who understands what this is like, and I hope my story can help some of you feel not so alone either.