Life with an Eating Disorder, Part 1: What It’s Like

This has been a long time coming.  I’ve written and rewritten it.  It’s hard to talk about.  There’s such a stigma about mental illness, and that’s what an eating disorder is.  I’ve heard so much “Just have willpower,” etc. that I was afraid to talk about it for a long time.  It’s a disorder that rips up your brain and makes you feel weak and ashamed.  I tried to hide it, but that doesn’t work.  It’s time to talk.  This will be in multiple parts.  I’m in recovery; more on that later.

I was reading an article about eating disorders, and thinking about it often.  In the article, they refer to Eating Disorder as ED.  I liked that, but I think of it as Ed, personified as a miserable, hateful old man who hates everyone.  He’s the kind that kicks puppies and throws newspapers at children who step on his grass.  He’s the type that is so angry that he wants everyone to hurt just as much as he does.  And he’s in my head, taunting me for every decision, every time I get dressed or look in the mirror.

I also have body dysmorphic disorder.  It means what I see in the mirror isn’t reality.  I don’t really know what I’m looking at.  Sometimes, I feel perfectly fine.  Sometimes, what I see is so obese and distorted I just stand there and cry.  Sometimes, it makes me physically sick.  These changes can happens days, or sometimes hours, apart.

This disorder moves in phases.  I have wonderful days where Ed doesn’t talk at all, or I can tell him to shut up and leave me alone.  Those are my Upswing Days.  I have days where Ed is so loud I can’t think straight.  I feel miserable, sick, and Ed rules my brain.  It’s an inner voice that demands, belittles, and overrides everything else. Those are the Down Days, where nothing I say seems to quiet him.

It has a direct effect on everything.  On my Up Days, I’m cheerful.  I can focus on food as food and I like exercise.  I feel genuinely happy for others and proud of myself.  I have energy and get things done.  I sleep well.

On the Down Days, everything is reversed.  Food becomes comfort, not food, and I want all of it.  ED for me is a binge eating disorder; it can take many forms for others.  For me, it’s the overwhelming urge to eat anything and everything, in an attempt to fill up some kind of emotional emptiness.  And when I say everything, I mean everything.  Bag of chocolate chips, pudding mix, you name it.  I eat and eat until I physically hurt, and then I cry because I’m such an out of control wreck.  I don’t purge, though I admit I tried, but my gag reflex isn’t sensitive enough.  Ed often says I can’t even have an eating disorder “correctly,” because I have the one that makes me fat.

There are lots of triggers.  First, allow me to address the word “trigger.”  It’s not a political buzzword; it’s a real thing.  A trigger is something that creates a sudden psychological response.  For instance, due to my PTSD, when I hear a loud noise like a car backfiring, I smell and taste blood.  With Ed, for me it’s stress, loneliness, lack of sleep, anger, and certain verbal triggers.  Verbal triggers are always discusses of body image, weights, diets, and food.  On Up Days, the verbal triggers have little effect, or I can talk them down.  (Although if they’re repeated enough, the binge urge begins even on good days)  On bad days, Ed has an answer for everything.  I don’t verbalize Ed, but he talks in my head. For example:

1. Person: “When I was young, I was so thin and cute! I could wear anything.”

Me: “Those were the days, huh?”

Ed (inside): See? You were <i>never</i> thin.  You were always fat and ugly, and everyone thinks so. that person just said only thin is cute.

2. Person: I’ve lost so much weight on XX Diet.  Here’s how it works.

Me: Wow, interesting.

Ed: See, normal people can do a regular diet but YOU are too stupid and pathetic.

3. Person: You should try XX diet.

Me: I can’t because (fasting gives me migraines, PCOS has a special diet, and my therapist gave me one too. All true.)

Person: Oh, but mine works so well because…

Ed: They think you’re fat and disgusting, that’s why they tell you this stuff.  And they’re right.  They’re going to make fun of you later.

4. Person: I lost five pounds!

Me: Good for you! (I genuinely mean this)

Ed: They just want you to know how much better they are then you, and it’s true.  You’re so fat they can see you from space.

And so on.

Here’s the thing.  Intellectually, I know none of the people I know think or mean this. they want to be helpful and they’re excited about their success, and they want to share.  I wantt o share in their success too, because I’m genuinely happy for them.  The issue is that once Ed gets going, I slide toward the down days, and Ed’s favorite subjects are food, diets, how people look, and weight gain/loss.  Once someone else talks about it, Ed decides that’s his time to shine, and it’s all I can think about.  I am aware that Ed lies.  It doesn’t make it hurt any less.

Once Ed gets in control, it’s a nonstop barrage of insults and despair.  Then the BDD clicks on, and I can’t look in the mirror without sobbing or sometimes, at its worst, vomiting.  That’s how disgusting I feel.  These are the avoidance days.  I avoid mirrors, people, social media, and all of my energy focuses on Not Binging.  I try to wear clothes that hide my body.  All I want is food, and I have to monitor it constantly to avoid the spiral.  Sometimes I win, sometimes Ed wins, and then when Ed finally retreats, I start over.  It’s exhausting.

Wow, you might say, why would you let that happen?  See, here’s the thing: mental illness doesn’t work that way.  You don’t “let” it do anything.  It’s a function of the body, and you can’t order your brain to stop having ED any more than a diabetic can order their body to make insulin.  You find strategies to manage, but it’s not about “willpower.” You can’t tell it to stop and have it stop.  The solution is therapy, management strategies, and understanding that sometimes, Ed is insurmountable, and you have to forgive yourself for losing the battle sometimes.  That’s it.  It’s not about a magic diet. There are no quick fixes.

Like any mental illness or chronic pain, the hardest thing is making people understand that it IS real, it IS a problem, and while they can help, they can’t fix you, and that’s okay.  They just need to respect the battle.

This was hard to write, and will be harder to publish.  This is something I fought to hide for decades.  I’m going to talk.  I know that for some of you, this is painful to read.  I’m sorry for that.  But sharing about Ed helps me, and maybe it’ll help someone else.  Getting help is the only way out.

And because I’m committing to this, there will be follow ups:

Part 2: How ED happened and why it’s not about food

Part 3: Recovery and tools