• DearNeurotypicals

Food and Pandemics

Dear Food Muggles,

The eating disorder community tends to be quiet. (Trust me, those terrible Lifetime movies aren’t us). We are the least funded but most deadly mental illness, yet you’ll rarely see us out championing for the cause and petitioning for funding. To be quite frank, when the most widely known eating disorder organization seems to be encouraging our addictions by holding virtual walk-a-thons, when most of us are at the height of relapse--it can feel a bit moot. However, since lockdown started articles about our eating disorder experiences are appearing by the dozens, even on Buzzfeed. It’s not because we suddenly have more brain capacity to argue our points. Even those with Binge Eating Disorder experience the complications of malnutrition. It is because now more than ever we need you to listen.

We need you to understand despite every “we’re all in this together” post, we are not living the same experience. We understand that you are struggling right now too but our struggles are vastly different.

For example, I want you to visualize your store is out of your favorite brand of tortilla. What do you do? You likely buy a different brand of tortilla. Maybe you choose not to have burritos on the menu for the week.

I can’t do this. I travel twenty minutes out of my way to get my tortillas because the store near me that carried them closed. I’ve eaten this brand for at least six years. Almost every meal I eat is wrapped in a tortilla because I don’t like using silverware (don’t ask me what forks did to me in a past life I don’t know). Any other brand of tortilla is “unsafe” and would cause the same amount of panic as asking me to eat my cat’s shit out of the litterbox. If I run out I likely won’t eat lunch or dinner because that would require a fork or spoon. Or they will only be Smucker’s Uncrustable sandwiches which isn’t a lot of variety and is a lot of sugar.

It sounds ridiculous to you but that is in fact my reality. There were only two packages of my favorite vehicle carb the last time I went to the store and this gives me anxiety. This is an example of only one of my “safe” foods. Many of us are facing this repeatedly with our safe food staples because of the hoarding. Muggles, if you don’t find your item you can replace it. If we can’t find ours we don’t eat. It’s that simple. And it’s panic inducing.

You’ll find a wealth of articles about similar issues and the difficulty that quarantine is placing on eating disorders right now so I won’t drag that out. The point I want to make here is about the world you’re expecting us to come back to. If we are having such a different experience during a time where others have been able to collectively share in their suffering how do you think we feel in the regular world before COVID?

I don’t know how “normal” people respond to things like my physical therapist saying “bikini season is coming” or a friend pushing their plate away and groaning, “I’m full,” when I’m still hungry. And I can’t explain why these things are so triggering to me but these are things that cause me serious anxiety daily. I am so clueless as to what it’s like not to have an eating disorder, I once had to ask a Food Muggle friend what the appropriate response is to a coworker saying they are unhappy they gained weight over the holidays. It was quite uncomfortable when I realized listing weight loss apps in alphabetical order and level of usefulness was not the right course of action. I still don’t understand why I’m supposed to lie and say I gained weight too but I’m trying to learn how to smile and nod along with you guys. I’m not trying to be persnickety, I'm just clueless.

Food Muggle, I want to do one more visualization exercise with you. Think of the thing you’re most self conscious of. Do you have a mole on your butt? Do you trip over your feet? Stutter when you talk? Have a gap in your teeth? Did your parents divorce when you were very young? Did you suck your thumb until you were twelve? Do you have that thing clearly in your mind? Any time I refer to anything eating disorder related I want you to replace the eating disorder idea with whatever that thing is. Because I guarantee you no matter how candid your loved one with an eating disorder is; it is something equally painful to them.

The fact that everyone I know with an eating disorder is relapsing at a time when no one can see us should be a key indicator that this is not a matter of vanity or being the thinnest yet no matter how many times I tell people it’s not about being thin it seems to fall on deaf ears. Right before all of this started I ended one of my closest friendships because although she kept commenting on how strained my body looked underweight she kept asking for tips saying, “I’m jealous of you though; that you can just ignore your hunger. How do you do it?” Nevermind that at the time I found even carrying on a simple conversation exhausting because my body was under so much pressure.

This isn’t a hobby. This isn’t like crochet where once it started hurting my wrists I could stop. I don’t know why I stopped eating as a kid or why at fifteen I made myself throw up for the first time. What I do know is once you’re strapped into a rollercoaster and it starts down the track you cannot stop the ride.

What you as Food Muggles need to understand is that while lockdown has been horrible and triggering and yes it has caused me to go deeper into disordered behaviors I would rather stay locked inside my apartment with my disorder than go back into your world. Maybe I was more able to “pass” and control my disordered behaviors while forced into your world everyday but it was literally killing my soul. I was more depressed dealing with your neurotypical policing and microaggressions. A couple months away from that has completely changed my mental health and I am not sure I am emotionally prepared to put myself back into that environment.

But I don’t neurotypically police my disordered friends. I know you just thought it. I hate to break it to you but you probably do. My friends are amazing, wonderful and loving people. I know that I can call them any time I need anything and they will help. And every one of my non disordered friends has policed me. I cannot get through a single meal without hearing some variation of “is that all you’re eating” followed the next time by, “glad to see you have a hearty appetite today.” There’s no amount of food I can put on my plate that is correct. I’ve had friends argue that my eating disorder couldn’t have started in childhood because they knew me when I was fat. I don’t know how to explain to people that an eating disorder is not a body type. Mine has just manifested in a way that I’ve been every body type. There’s also everyday microaggressions like my doctor comparing me to her receptionist who is my height but three pounds less or friends laughing at my healthy coping strategies. And just because I use humor and crack jokes at my eating disorder to cope doesn’t give you free rein to do the same; you don’t get to make fun of my brother because I do.

The worst thing is regardless of if I’ve lost weight, gained weight, or stayed exactly the same when we come out of quarantine everyone will make some comment on my body and how it looks. My favorite is when I’ve lost weight and someone who knows I have an eating disorder says, “whatever you’re doing; it’s working.” Great, I’ll keep killing myself so you can enjoy the shape of my body. And because I know this is coming and we’re starting to talk about opening up our governments I’ve dramatically cut my calories and started attempting ridiculous home workouts.

Almost every able bodied neurotypical I know would say they want “accessibility” for everyone but what they really mean is they want accessibility for disabilities they deem worthy of having accessibility, usually ones they can force corporations and governments to provide: wheelchair ramps and braille on atms.As someone who spent five months in a wheelchair and also struggles with physical disabilities these things are important but these things do not make a world fully accessible for me and others with eating disorders and mental differences.

An accessible world for me requires work from everyone. It means you need to think about the things you say and care before you say them. You may think that I’m the perfect person to talk about the weight you gained over quarantine; that I’ll find it so relatable. I don't. While you may be unhappy with your “quarantine 19” I will literally kill myself over three pounds. My friend once had to talk me out of sucide over a pizza. You can practice healthy diet and exercise to lose weight. For me diet and exercise are my addictions; there is no healthy. That’s what makes it a disorder and that is what makes my weight gain and your weight gain unrelatable experiences.

You may think my triggers are arbitrary or silly and you shouldn’t have to care about them but I have thrown out perfectly good meals when I was starving at my physically demanding job because someone told me there was oil in them. My body is tired. When you go to open your mouth about someone’s eating disorder, body, or food intake or anything else they’ve said is triggering, stop yourself: how would you like it if someone said that or asked that about the thing you are most insecure about?

So many people don’t realize how easily words can become the thing that tips the scale before I make an excuse to slip away to empty my stomach contents or skip a meal. Yes, at the end of the day I am always the one making the decision. I am always responsible for my actions, not you. However, I spend twenty-four hours a day seven days a week playing mental gymnastics to keep myself healthy and even the best gymnasts are going to get tired if you keep putting jumps in their way under those conditions. So many times I’ve fasted to prepare for meals out with friends only to have friends comment on how much I was eating once I finally got to my first meal in days. Feeling judged for overeating I quietly disappear and purge. And I will always smile through the questions and commentary so you don’t feel bad; I often worry about my friend’s feeling guilty about my eating disorder so I go through great lengths to hide any correlation between their words and my actions. Just because I can sit here and calmly explain the trigger to you, how it works and that it is in fact irritational does not make me impenetrable to it. As one song about eating disorders says, “just because you know you’re colorblind doesn’t mean you can see the colors.”

And trust me I know my eating disorder is inconvenient for you. Imagine how much more inconvenient it is for me.

I know my letter is getting long so I have one last point to make before I wrap it up. When I was in my early 20’s rumors started circulating that I was on drugs. This is when I came out about my eating disorder because I thought it would be better to be starving myself than to be an addict. I often wonder now if I made the right decision. I try to be candid and educational with people to beat stigma but now as I approach my 30’s this has become tiresome. Yes, I am a walking encyclopedia of eating disorder information but could you google that statistic instead of interrupting me at a meal as I deal with the thing that triggers me most?

We don’t owe you an explanation for anything we do; you are not our medical or mental health providers so if we take the time to answer your questions you better listen so we don’t have to keep answering it over and over again. And no, not everyone with an eating disorder has the same opinion on that issue. No we aren’t all voting for the same presidential candidate. We are different people with different opinions. No, I don’t know why that person with an eating disorder did that thing that one time, did you ask THEM? And yes, these are real examples of some of the ridiculous questions I’ve answered.

I know my friends mean well and I don’t want to discourage them from learning about eating disorders so I try to answer but sometimes I feel like the scene from Kate’s Secret where she asks, “Does anyone have names around here or is it just disorders?” I am so much more than my eating disorder: I am a writer, a cat mom, an art-enthusiast, an activist. However, when my friends ask first what’s on my plate and not what I’ve written lately I think they’ve lost all the true indicators of who I am and what makes me well. The DSM says I judge myself too much by what’s on my plate and what’s on the scale but everybody else does too.


An unfortunate food wizard

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