Sorry my eating disorder is invisible. How can I make it more convenient for you?

My family likes to tell me they walk on eggshells around me. You see, I lack a filter, so things like “PTSD” and “eating disorder” come out of my mouth sometimes because conversation is #relevant, and it makes them uncomfortable. They take my responses to their conjecture as offense, but I feel like it’s important to try to educate people when I have personal experience and they are simply pulling their info off the latest trending Facebook post about the matter.

Unlike my need for corrective lenses, they don’t see my eating disorder on a daily basis. Really, they don’t see it at all unless they know what to look for. I’m Cassie Ainsworth. My family is oblivious to my relapsing until it affects me outwardly. Except, when it affects me outwardly, it’s difficult for them to understand because unlike my glasses, they don’t see my eating disorder on a near 24/7 basis.

I’m the offspring of divorced parents. My mom got custody, so my dad’s side of the family didn’t witness the signs. Even when I had obvious signs, they went unnoticed because my guardians neglected and abused me, and doctors were adamant about me being a particular weight. My struggle was always too much or too little, my only method of resolve starving myself or binging because my guardians called me high maintenance for not wanting to go out to eat because I was tired of greasy food, or for wanting to eat a meal instead of bloody Ding Dongs and Twinkies.

What is the obsession with Twinkies? They taste like cardboard that has been soaked in water and drenched in sugar, and they make me feel like shit after I eat them.

I do have obvious external signs of an eating disorder.

The biggest one is my skin color. My “original” made me look like I got tans, even though I didn’t tan. People used to throw racist epithets at me, but it stopped in 2012 after I was diagnosed with depression and PTSD. I quit eating. My skin turned pale at first, and now it’s this gross, splotchy and dull color.

In natural lighting, I can give the impression that my skin is one fine, solid color and that you can’t even see my veins. Thank God for photo filters, because how else would I be able to hide such abnormalities in my Instagram photos?

My fingernails are frail and brittle. Did you know our fingernails grow in in layers? I didn’t until one of mine peeled off halfway. Because I’m a nail biter, I lied by omission and let people think I had bit it off.

I often lied about my eating disorder, because I had more than society to shame me for it: My mother made mental notes about myself and my health, and used them all against me anytime my life was any bit of borderline amazing. It was her way of knocking me down a few pegs—so she could build me back up and remind me why I needed her.

But regardless of the at-home stigma, the stereotypes surrounding eating disorders are too damaging to continue perpetuating. I can search Google for “eating disorder signs”, but I have to try to manipulate it if I want an article for EDNOS signs. (Which I don’t actually want, because I hate reading those lists and finding I still meet 80+ percent of it.)

I didn’t know I had an eating disorder until I saw it on Skins.

Hindsight tells me I started starving myself in sixth grade, but was primed for an eating disorder starting after my mother said, “I do,” to the man who’d become my stepfather. I don’t want to get into all that crap, because it’s a lot of crap, but my blog is full of posts that’ll give you an estimate of what kind of sorcery he was about.

Degrassi was a show I was allowed to watch even when I wasn’t a teenager, because my mom had watched it growing up! Judging from Wikipedia, the old school version she got covered similar topics as in The Next Generation, which baffles me because hello it covered child abuse, and I thought I wasn’t allowed to watch things that filled my head with poppycock?!

Anyway, Emma and Manny had eating disorders. I started to get an idea of what even an eating disorder was, but in my book I didn’t have one. I mean, I wasn’t sticking my fingers down my throat and puking, so I was fine.

But I had collages on manila folders I’d use as custom dividers in my binder—and collages all over my binder. And I didn’t always have lunch money ’cause I was neglected, you see, and the stepfather made the matter of giving me lunch money a burden, so I eventually stopped asking. In seventh grade, I changed schools and made a friend who brought an extra bologna-and-mustard sandwich one day, and…I think she knew. Thereafter, I got into the habit of eating lunch again, and she was able to convince my mom to finally be Mother of the Year, which meant she brought us lunch from Subway or Sonic sometimes. I think she once brought us a pizza. And she started giving me lunch money to use, that mother o’ mine.

Then we moved back to Dallas. I was pissed, because they’d promised me Austin/Round Rock would be the last time until I graduated. I fell back into the same habits. I went through the Forney High School lunch line maybe thrice the entire 2ish years I went there.

Fast forward to after I graduated and when I watched Skins in 2011 via a Netflix subscription I got because I was adulting. Oh, Cassie Ainsworth: So, so beautiful. And lovely, too. Her technique was similar to mine. I fell for her more out of admiration than a romantic feeling, but the lines were so blurred that I’m not sure differentiating it matters.

Before Cassie, I was a bitch in denial. I read two blogs by anorexics in partic, and I flat-out told them eating isn’t that fucking hard. Fiction and television change lives, yo.~

When all the little things are looked at full-circle, it’s obvious there is an eating disorder.

If you look at me and examine what I do separately, everything pointing to an eating disorder looks innocent and quirky.

You might even find it cute how I arrange my food on my plate to look pretty.

But for me, there is an inner struggle against this voice telling me I should be lucky there’s a roof over my head and that I don’t deserve to eat.

Sometimes I struggle just to finish the last few bites of something—physically, not just mentally. It’s like, even though my body is hungry—because it’s the first meal I’ve eaten all day—the thought of eating alone induces vomit. I don’t want to do it, because I’m probably gonna feel like crap. On the other hand, I have to feel like crap for a while before I can handle eating on a regular basis again.

Even if I use portion control—which I can’t keep track of because it’s a recovery thing and FML IF SOMEONE COMMENTS ABOUT WHAT I PUT ON MY PLATE ONE MORE TIME—and have a “serves one” meal, there is that guilty feeling. It was instilled within me when I thought eating was something you did when you were hungry and thought nothing beyond it.

The struggle is more internal, though, and I do wish that I could somehow make it external. I feel like if what I struggled with was somehow visible to outsiders, my eating disorder wouldn’t make people so uncomfortable and pushy because they’d be as used to seeing it as they are a bespectacled redhead. The dilemma of Should I take this burrito with me to shower? would not be something only God and me are aware of. Because to me, food is this thing I need to survive, but it has also become my greatest enemy. It is this external thing my body needs and craves, and it takes up time I could put to better use.

“Recovery” is overrated AF.

I don’t believe in recovery-recovery. I use the term, but part of my “recovery” involved naming it something else.

My eating disorder is Eating Disorder Not Otherwise Specified (EDNOS), and sometimes I call it “Edna” in my head because it has an attitude of its own.

My “recovery” I call a work-in-progress. I feel like recovery means I’ll one day be “cured” of an eating disorder, but based on science and judging by previous relapses, it’s going to be something I’ll forever battle.

In my recent relapses, I’m trying this new thing to where I don’t freak out over having failed yet again. When I recognize that I’ve relapsed, I press pause on my life and assess it. I’m well aware no real pause button exists, but so what? If I keep pushing myself again and again, I’m going to wind up worse than worst time.

Like, people die from eating disorders, you know. It was that worst time that I realized, “Wait! I want to live! No, I don’t want this pain! I’m so sorry! I’ll stop playing with my life-threatening allergies. I’ll avoid nuts like the plague! I was just kidding!”

I was so determined to try to be better that I ate bowls of bran flakes with rice milk[2. ‘Cause I can’t have nut or dairy milk, and yes that includes coconut—please take the lecture by your not-allergic-to-coconut self to someone else who has not almost died from coconut, thank you very much.] four times a day for a week.

I’m not ashamed of my eating disorder as much as I used to be. I suspect my eating disorder really started in 2003, when I was in sixth grade, which means I’ve been battling this bumpkin for 15 years. I’ve experienced conditions unique to a select few of individuals, including water intoxication. Please trust me when I say it’s as annoying as food poisoning and refrain from attempting it yourself.

My try-it-myself solution is to go back and eat the foods I don’t have as negative a relationship with. The foods range from pizza rolls to fresh produce, but eating healthy doesn’t mean sticking to a “clean diet” and never eating junk food. I don’t have splurge days, ’cause I’m not allowed. I mean, I don’t call ’em that. ‘Cause I can’t. ‘Cause I can’t control the need to starve myself for some days after or to overwork my body in exercises—only to binge on anything I can eat after the starvation period.

If my try-it-myself solution doesn’t work, it’s the hospital. And while I don’t want to be hospitalized, I don’t want to die because of something that could have prevented.

This post was written in conjunction with National Eating Disorder Awareness Week (26th February—4th March 2018). NEDA’s theme this year is Let’s Get Real, the goal to expand the conversation and highlight stories we don’t hear often to spread awareness, bust myths, and get people screened. I’ve never actually shared mine so openly in public before, and I even withheld a lot of stuff in therapy because sometimes I find myself feeling burnt out on talking about shit—and I don’t like to talk about my feelings. They’re really boring, and after having lived through them I feel like they’re oftentimes yesterday’s news.

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Illnesses and diseases are not always visible and people should not assume that you are lying or that you can’t be ill just because you don’t look it. Carly Findlay, a writer from Australia (you might like her blog!), writes about disability and appearance activism. She has a skin condition, yet not everyone can “see” that it gives her a lot of pain. An eating disorder is one of those illnesses that you can’t see, and affects people in different ways. Contrary to popular belief you don’t have to be skinny to have an eating disorder. A lot of eating disorders are characterised by a poor relationship with food.

I consider myself to have had an eating disorder at some point. And it doesn’t have to be extreme to be considered one either. My eating disorder was in the form of skipping meals, binge eating and then starving myself, yo-yo dieting, and while people often emotionally ate, I emotionally didn’t eat – I’d avoid food so long as my mental health was at a low.

Don’t get me started on mental health either – it should be obvious to most people that you don’t need to be crying to be struggling from mental health issues. Go figure 🙄

P.S. As someone who often struggles from mental health issues, I obviously didn’t mean any offence with “Go figure”, but just expressing how I feel about the stigma around mental health. 🙂

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Sorry you’ve had to deal with this issue for so long. I think you’re right that “invisible” illnesses can be harder to deal with because people don’t know what to expect and they aren’t faced with it daily (only you are). I hope you do eventually find a place of healing, but I know that road can be long and hard.

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