Every Day Eating Disorder: What's it's like to talk out loud about my illness

The other day, I made a decision.  For me, it was revolutionary and completely terrifying.  It is in regards to how I handle having an eating disorder and how I talk about it.  You see, for the most part, I didn't.  Not out loud, in person, to people I love.

Almost never do I tell them what it's really like for me on a day to day basis.

So, I made the decision to talk about it.  

I can write about eating disorders until my fingers fall off.  But looking someone in the eyes and saying, "Eating is hard for me.  Every day.  All the time.  Not just when things are bad or I'm stressed out, just all the time."  Felt like a social death sentence.  What would my friends think of me when I suddenly put them face to face with the darkest, hardest to swallow, piece of me?  Especially when like, 80% of my friends are fat?  Would it sound like a humble brag?  Would they think that instead of my real reality, which is that food is scary and I hate eating, they'd think I was trying to rub my thinness in their face?  Would they hate me for being "lucky" because they "have the opposite problem?"  

The answer is: Yes, a little bit.  But mostly, no.  

I don't remember exactly what it was that made me decide that I wanted to talk about it.  I guess it was mostly a subconscious process.  I started thinking about it because for years I've hated being told about diets.  I have good reason, hearing about fad or overly-restrictive diets usually sends me down a spiral of anger and jealousy and sometimes actual restricting.  It has been historically very bad for me to put up with hearing about diets.  Most of my friends and family knew this because I would say things about other people around them, "OMG!  So-and-so is trying to tell me about her stupid fad diet again and I'm just like. . . GAHHHH!! Shut up!!  Seriously, you seek out the person you know with AN EATING DISORDER to tell me all about how you're ruining your children by constantly dieting and hating your body in front of them?  AWESOME."  Which was a pretty clear cue for the friend I was ranting at to never tell me about their diets.  Or I'd blatantly say, "Can you not talk about these things with me or around me?"  In the case of my mom and sister, "It makes me jealous and want to hurt myself."  So they learned not to discuss weight around me.

Well, after this past year of therapy and a lot self care, I've got some shit together better than I ever have before.  I'm not saying I'm cured.  There's no such thing as a "cure," just a lot of hard work and constantly choosing to be well.  But I'm working hard and choosing all the damn time, so what I'm saying is that I'm currently more recovered than I've ever been before, and I have a lot of faith that I'm going to keep getting better.

So when my mom, my sister, and my best friend all caught themselves talking about their weight and diets recently, they all said basically the same thing, "I"m so sorry.  I'll stop.  I know you don't like to hear about these things."  

And it shocked me.

I guess it shouldn't have, I'd trained them all over years not to talk about it.  

But none of them were talking about harmful fad diets, they were expressing a real desire to be ok.  To find balance.  To have a better relationship with food. To be healthy.  

All of the things I'm always looking for.

It took some time but I came to the conclusion that I shouldn't be silent about my own struggles.  Sure, part of the idea behind being more vocal was as self defense.  I wanted to be able to look at someone telling me about their harmful diet and say, "Juice diet you say?  I haven't eaten a real meal in three days.  If I lose five more pounds I'm not going to have a period anymore and I'll probably get osteoporosis at a young age.  Oh!  And my heart probably won't be able to take much more of this either!  Dieting is fun!"  Or, "You know, I find that moderate to severe anxiety is a great way to lose weight!  Just look at me!"  Or even more evily satisfying would be, "Have you tried having an eating disorder?  Aside from the crippling emotional side effects, it's great way to get rid of that pesky body of yours.  I mean, I don't even digest food anymore.  Chronic diarrhea for the win!"  At which point they'd flee into the desert and never speak to me again.  Thank god.

Side note: GI problems are one of those things people with ED's don't really talk about to other people, but are a very real consequence of chronic eating disorders.  My GI tract is basically FUCKED from years of inconsistent eating patterns, over-consumption of sugar free drinks (diet soda, artificial sweeteners in my coffee), chewing gum instead of eating (sorbitol, a sugar alcohol in sugar free gum can cause diarrhea), and substituting meals with alcohol or low-calorie fruit.  Part of it is just that my body isn't always sure what to do with all this STUFF (read: food) I just put into it from my mouth, so it poops it out almost untouched.  It's gross, but also a part of my reality.  I face a life of chronic malnutrition because my body is like, "Food is hard."  

Side note 2: I recently saw a gastrointerologist about this and I am helping my body by trying out a low FODMAP diet.  Or rather I SUPPOSED to be doing a low FODMAP diet.  I'm not yet, because any type of restrictive diet freaks me out.  For me they have the very real possibility of triggering a relapse.  I just got over a relapse, and I don't really want to go down that path again any time soon.  Although, I'd really like to stop shitting my guts out on a daily basis. . . So, I don't know.  I have some work and research to do.  Aaaaaaaand I've gotten off topic. Sorry about that. 

Ahem.

I haven't said any of those abrasive things to people.  At least not like, to them.  I've had conversations where I jokingly say things like that, but I haven't like. . . SAID it to anyone.  I did start speaking up though.

On a recent trip to the grocery store to pick up dinner for a friends' night in, I talked about how hard it is to choose food for me to a friend who notoriously tells me all about her terrible, unhealthy, fad diets.  

"No, seriously.  Get what you want and I will eat it.  Sometimes, just the act of choosing what to eat becomes so exhausting I won't even eat it when I get home.  I just. . . Can't."  I could tell it made her uncomfortable, but she listened.  She chose sushi and frozen chimichangas with a side of olive bar.  I bought wine.  I can always choose wine.  It's just a struggle not to drink the whole bottle instead of eating.

While she was uncomfortable with the conversation, it wasn't because she didn't want to hear.  It was because it was new.  She's a fairly new friend, so she hasn't been there for the serious ups and downs (which I've always hid pretty well anyway).  I've never explained what having an ED means for me.  It's been a vague, half hidden thing for her.  She knew I have one, but I think it's viewed as rude or something to talk about someone's mental illness to their face.  Which is weird, if you really think about it.  I've never met a group of people who more readily WANT to talk about what's wrong with us than the crazies.  We want to be heard, understood, and loved because we feel so lonely and hurt all the time.  That said, it's also really scary to open up about mental illness without an "in."  Like, unless you're physically present when I have an anxiety attack at the grocery store because they don't have 97% lean ground beef and now I can't ever eat again because the 93% lean ground beef just isn't lean enough, it's unlikely you'll see how pervasive this illness is, and it ends up just sounding like I'm a skinny white bitch who thinks she's too good for food. I also worry about the implications of being a thin person who is vocal about being afraid of gaining weight.  I mean, if a skinny person like me is like, "OMG, my entire body is too big!" (which is not actually how eating disorders work, but that's how they sound) How are you, someone who is obviously fatter than me, supposed to feel?  

Hint: you're perfect and beautiful just the way you are. So am I.  I just have a real disorder that displaces my anxiety into a fear of and/or need to control food.

So while she was clearly a little uncomfortable with this exchange MY heart was racing.  My mind was going through all the ways it was wrong of me to say something, how I shouldn't talk about it, and what a bad friend I am. . . But then we got home and we ate our weird meal (which was yummy) and I told them, "I replace food with alcohol a lot and I need to not do that.  Please don't pour me any wine until I've eaten at least a little bit."  Which was also horrifying to say, but it was real.  It needed to be said.  They listened.  

Fun fact: when my anxiety levels are high I eat less.  Not always in a disordered way, I just eat less.  Some people eat more, I eat less.  So when I started telling people about the things that are still hard for me to do (choose food, eat food), I actually did restrict a little.  Unintentionally.  But I was just so afraid that I'd opened up, that I couldn't help myself.

Now though, I've been open to a lot of people.  

I shocked another friend by telling her that I've experienced weight related amenorrhea in the past year, because she really thought I had my shit together.  Although I was technically wrong, I have experienced weight related oligomenorrhea.  Semantics.  She was shocked because I never talk about it.  Not because she didn't know I have an eating disorder, but because no one around me in my day to day life quite realizes how real this is for me.  How often my weight drops below a healthy level.  

Now my goal is to just. . . say how I feel.  "This is too hard,"  "I hate picking out food,"  and, "Why do we even HAVE to eat anymore?  Hasn't science figured this shit out yet?"   I can now say, "I'm having a bad food day."   

It's such a relief. 

Just saying it often makes the feeling go away.  It takes the disorder's power away and gives it back to me.  It takes away the secrecy and shame.  It's just how I am, and it is temporary and now at least you know why it took 45 minutes to choose an item off the menu.  

Sure, online I'm open about it, but the internet is such an anonymous place.  Now my friends and family are seeing this side of me for real.  And you know what?  They still love me.  In fact, I think they may actually love me MORE.  Or they're less afraid of me.  Or maybe I'm less afraid of them.   In any case, it has had an interesting outcome.  

I was expecting to be shamed by my friends and family as much as I shame myself.  I expected to be shut down or shut out.  Instead I've been met with quiet confusion, acceptance, and most surprising (to me) understanding.

So many people I've opened up to end up saying, "I have that same problem.  It's just. . . in the opposite direction."  I expected this comment, but I expected it as a dismissive joke.  Because I've HEARD the dismissive joke.  It's as bad as saying, "I wish I had that problem." Then laughing in my face.  Which has happened plenty.  

But it hasn't been a joke.  Not once.  It's been, "I can see where you're coming from.  I understand. I accept you. I'm sorry it's hard, it's hard for me too."  

And while I don't think all of the people who have said this to me have an eating disorder, I DO think they can relate.  Because I'm actually explaining it. I'm also not yelling in their faces not to talk about it around me, that probably helps.  

So, in a way, I have freed myself.  Being open has released so much shame and fear, and also somehow, made my own eyes open to the fact that while my struggle is real, it is not the only one.  Weight is a touchy subject, and I've been known to be a real asshole to people who are struggling with it.  Probably because I struggle with it too, and mirrors and shit. 

I will still refuse to join in on any body shaming conversations.  

If you're going to complain that your ass is too long and your nose too wiggly and how you're going to do a cleanse followed by PX90 followed by crossfit followed by a juice diet, I'm going to give you a dirty look and tell you that you're beautiful the way you are that your self hatred isn't going to help anything and then I'm going to walk away before I punch you for being an inconsiderate asshat.  

But. . . When the conversation is real?  When we're talking about how hard it is to feed ourselves well, physically and emotionally?  I want to hear that.  I want to talk about it.  I don't want to hide in plain sight anymore, and I invite you to join me.  Let's share a meal, and a conversation. Just make sure to keep the wine away from me until I've eaten, at least a little.