Why “To The Bone” Gets Anorexia Wrong (And How To Change The Narrative)

As an anorexia survivor, I am befuddled and stunned by To The Bone.

Not only is it “shallow, sexist, and sick” but it is not even a good movie. An article in the Atlantic says the film, “is a mostly unremarkable film about anorexia, in that it follows the model of virtually all existing films about the subject.” It is to be noted that as I’ve written before, almost all eating disorder movies are awful, so “following the model” is not great press.

I am not even going to elaborate here on my disappointment with Project Heal, a major eating disorder advocacy organization that publicly endorsed the movie and even had a viewing party for the film. In addition to this, most treatment centers were quiet on taking a stand, and as Laura Collins Lyster-Mensh writes in a refreshing departure from generic “viewing guidelines” put out by almost every eating disorder organization, “We are all under pressure to promote the film or just talk about it, which is also good publicity.”

Project Heal co-founder Kristina Saffran suggests in a BBC interview that To The Bone is meant for the general public, in that the movie aims to open up a larger conversation. In this blog, I’m going to be talking about my concern about this portrayal of anorexia to the larger community.

To The Bone will open up a conversation, but I’m not sure if it’s the right one.

I see the movie as Marti Noxon’s story and as her message of hope. Ellen/ Eli is a brooding twenty something, full of teenage angst and emo, pro-ana Tumblr drawings. Chocolate, dances in waterfalls, and somewhat hallucinatory, dreamlike moments compel Ellen/ Eli to choose life at the end of the movie… or so we think. The movie ends with the possibility of hope and new beginnings as Ellen/ Eli re-enters treatment.

If the film is indeed a loose adaptation of director Marti Noxon’s own anorexia struggle, viewers are led to believe Ellen/ Eli does end up in recovery. Noxon and fellow film actors consulted with Project Heal in the making of the movie and have done subsequent promotional eating disorder awareness campaigns.

The movie might seem as if it has a pro-recovery message, but it doesn’t.

Despite the movie ending with Ellen/ Eli choosing hope over despair and death,  I will argue that the movie highlights hope instead of recovery. 

Hope and recovery are separate but related constructs, and it is dangerous to meld the two concepts. You can have hope without recovery and recovery without much hope. Let me explain.

When I was forced went into treatment for the second and final time, I was not at “bottom,” or so I thought in my nutrient-deprived mind. I wanted a month longer to get to however much lower I could get my weight. Did I have a reason? Did I want to die? I didn’t have a reason, and I didn’t want to die when it came down to it.

I also did not have hope.

When I entered treatment, I subconsciously knew I didn’t want to die, but I had no reason to live, either. My starved brain and starvation-based depression had me living in a cloud of darkness. When the brain is deprived of nutrients, it does not function optimally. I was not capable of hope or feeling much at all, actually.

My first morning of treatment, I was given breakfast. I looked down at the plate, having not eaten breakfast for at least a year. My immediate thought was, “I guess I’m eating breakfast now.” And I ate breakfast. It was not “orgasmic,” as To The Bone would absurdly indicate. It was just breakfast.

So I ate. I talked about my depression and hopelessness with my therapist. In full disclosure, it didn’t get any better for months. I didn’t feel happy to be alive or worthwhile as a human being. Sometimes I don’t even to this day.

The big difference between Ellen/ Eli’s hallucinatory revelation and my story is behavioral: I sat down to breakfast. I didn’t fake my way through treatment. I went through the motions. I ate snacks that challenged me.

It was not perfect, easy, or fun, but I did it with the anticipation that perhaps someday, I would feel happy. Someday, maybe, I would smile and mean it, fall in love and feel it, and find a career and enjoy it. Maybe someday. But that someday did not come into fruition for a long time.

Sometimes, eating disorder sufferers have to do the hard work of recovery without a reward.

Sometimes, we don’t have the luxury(?) of hallucinating in a desert to realize life is worth living.

Sometimes, we are plagued with ambivalence years into recovery, or worse, relapse and feel deep shame for the perception of letting others down.

Hope is a building block of recovery, but it is not the only building block. It is great when it’s there, but if it’s not, oh well. Doing the hard behavioral work is what helps people recover.

To be candid, there is nothing that is recovery-focused in To The Bone. I suppose it’s great Ellen/ Eli finds hope and returns to treatment at the end of the movie, but if this were real life, she would have to find an actual treatment center. To The Bone glamorizes a “treatment” that is a) not treatment and b) provides unnecessary, misleading, triggering details of some people’s experiences.

There is little that is pro-recovery in the entire movie. As Collins Lyster-Mesh describes perfectly:

There are no recoveries or recovered people in this movie. No one is abused, mistreated, or dies, but no one gets well or does any of the actual work of recovery from an eating disorder, unless you call having visions in the desert therapeutic. Insurance may not pay for that, but there’s no waiting list.

In eating disorder treatment and recovery, there is no lasting hope for the future without behavior change. Behavior change is not the only facet of eating disorder recovery, but it is a necessary precursor to life. Does Ellen/ Eli do the necessary work to get better, including eating more than one bite of chocolate the entire movie? We don’t know- that has been an artistic omission, and it is an omission that comes with implications.

The pro-ana commune that is passing as a treatment center in the movie is just a bunch of sick individuals talking about calories, restricting, cutting corners, and doing push ups. On a human level, it’s boring and sad, but on an advocacy level, it is terrifying and sad. Nothing about this is remotely pro-recovery. If this was a real treatment center, Keanu Reeves would have at least 10 malpractice suits on his hands for medical neglect and involuntary manslaughter (also maybe sexual assault depending on the nature of these nighttime “house calls” he does).

What scares me is not that these “unconventional methods” of essentially negligence will become in vogue (they won’t).

What scares me is what the larger public will see. What scares me is the conversation.

What conversation will come from this movie?

The movie may showcase hope, but it depicts a lot of other things as well. To The Bone is graphic, insulting, stereotypical, and crude. There are too many shots of protruding bones to count. I am concerned others will, perhaps subconsciously, file this away as a normative anorexia experience, or worse yet, see this pro ana colony as normative treatment.

The anorexia conversation needs to change. Anorexia films portray the same story over and over– a tragic, rich, white, straight, emaciated female with a “dysfunctional family” has anorexia.

To The Bone puts Ellen/ Eli into a tragic, starving girl Hollywood “type.” She looks waif-like and tragic as her family members fight in family therapy. She is an artist, but it appears that she is not working or going to school. She is emo, makes witty comments, and always wears dark eyeliner. She and the others in her “treatment facility” are not only able to access treatment but are able to take months off without working.

In my opinion, Ellen/ Eli is not a sympathetic character. She is two-dimensional and lacks depth. Yes, she is snarky and has enough eyeliner to star in a middle school PSA, but she has no hopes or dreams. I can relate to the narrowing of life that comes with an eating disorder, especially since she is sick the entire film. However, it doesn’t lead to interesting character growth.

Eating disorders are small and narrow diseases, and so is this movie. 

Anorexia is complex and multifaceted, and I saw none of that in To The Bone. To be frank, I didn’t feel anything at all for the characters or plot except for disgust at the triggering details that were unnecessarily included. Although I am also a white woman with privilege who struggled for years with anorexia, I do not relate whatsoever to this story.

To The Bone might be part of Marti Noxon’s story, but it is only a small part. The interesting part of Marti Noxon’s story is one that is untold by this movie- how she overcame anorexia and ended up being a successful director. That is interesting.

We don’t know where Ellen/ Eli would be in 5 years. She might open a successful indie art studio in New York City, or she might be dead. The audience does not get a window into her life or recovery. That does a disservice to survivors and the general public alike.

To The Bone does not get a pass just because it opens up a conversation.

I would be horrified if someone went up to me and said, “Do people actually get fed with bottles as part of recovery?”, or, “Do you think her mom’s postpartum depression caused her eating disorder?”, or, “Ellen got to wait until she ‘hit bottom’ so that’s what I’m going to do,” or, “Do you have ‘calorie Asperger’s’ too?” The list of misleading portrayals could go on and on and on.

We do need to have frank conversations about eating disorders.

However, To The Bone is not an adequate medium for doing so. The work should focus on awareness of the anorexia experience but also recovery and dispelling myths rather than perpetuating them. And if we’re going to make an eating disorder movie, at least can it be good??

We can do better than this. Everyone deserves better.

 

To The Bone: Proceed With Caution

My fascination with eating disorder movies developed suddenly one day years ago, when I had a free afternoon and access to YouTube. For example, Growing Pains actress and anorexia survivor Tracey Gold played someone named Nancy in a Lifetime movie that is one of the most cinematically horrendous things I’ve seen.

Did these stories perpetuate my already severe eating disorder symptoms by including numbers, behavior details, and images of thinness? Yes, probably. However, I watched movie after movie, memoir followed by documentary, for another separate reason: I wanted to feel understood.

In the isolated pain of anorexia, I had shut out all my friends. I had stopped going to treatment appointments. Cold and alone in a prison that became unmanageable, I wanted someone to take my hand. I wanted someone to tell me, “I get it.” I wanted to connect with stories that made me feel safe and validated.

So, I turned to YouTube.

These films did not “heal” me. They did not constitute treatment. However, years later, these narratives stick with me. Nowadays, I am not seeking “tips” or numbers; I seek understanding.

I want eating disorders to be understood.

So many films have broached the difficult subjects of schizophrenia, addiction, and bipolar disorder, to name a few. But eating disorders? People are primarily directed to Lifetime movies and documentaries so corny, outdated, and ridiculous they can barely be taken seriously.

Cue my excitement when I learned about To The Bone months ago. Perhaps this would be a good movie about eating disorders. My high hopes were based on the fact that lead actress Lily Collins and director Marti Noxon struggled with eating disorders in the past. In addition, Project HEAL, a recovery organization I respect very much, provided consultation during filming and has endorsed the movie.

The conversation began to shift when the trailer premiered last week. Controversy spread across the opinion spectrum. Many eating disorder sufferers are infuriated (understandably) that the already small lead actress lost weight for the movie, as well as the trailer’s triggering images of empty plates and protruding collarbones. Project HEAL founder Liana Rosenman released this statement:

It’s a challenge to make a truthful movie about eating disorders that sheds light on their severity and complexity — capturing the patient and family experience of this real mental disorder — without glamorizing the disease ‘To the Bone’ tows this line beautifully. While the movie has the possibility to be triggering to some, I strongly believe that it will make a huge difference of raising public awareness of this silenced disorder.

In this post, I will be giving a layered critique of To The Bone by highlighting some key issues at play.

While I have not watched the movie, both the trailer and my understanding of the social and psychological factors of eating disorders will equip me to preemptively raise some questions and critique aspects of the upcoming film.

The Power of Eating Disorder Narrative (For Good and Bad)

Let me preface what I am about to say by noting that I will be watching To The Bone when it premiers.

I believe in the power of narrative.

When harnessed for good, the power of story can bring peace, hope, and understanding to the weary. Eating disorders are complex, misunderstood illnesses that have not captured adequately in film. Dozens of movies embrace plot lines surrounding alcohol and drug addiction, but eating disorder themes are often swept under the rug.

Historically, movies that cover eating disorders are truly awful.

I cannot say that more emphatically.

The level of cinematic creativity and diversity can be represented by me describing one scene that is inevitably in all these movies: Brooding teenage girl staring at the mirror with a bra on feeling like she is fat.

Is that the best we can do?

Elementary school-aged children have body image issues, dorm bathrooms have clogged drains from vomit, and the American diet industry is worth billions, but let’s look at a white, upper-class girl looking in the mirror with disdain?

American film is better than that. Eating disorder research is farther along than that.

It’s treacherous territory making a movie about an eating disorder. To accurately depict the hell and pain of these clusters of symptoms, while promoting recovery versus the pro ana/ mia communities, is like tiptoeing on a cliff.

“Honest” depictions of eating disorders such as Wasted and Thin have done much harm in inadvertently exacerbating a pro-eating disorder mindset. Included in these films are details that have served as “how to” tips for those who are very much embedded in an eating disorder mindset.

What can be most triggering for eating disorder sufferers in film is mention of numbers, images of grotesquely thin people, and vivid descriptions of ED behaviors.

This brings us to To The Bone.

To The Bone is advertised to be a movie that doesn’t “hold back,” in terms of showing a woman out of control in her life, with a sunken face and empty plate. Lily Collins is emaciated in the movie, a role for which she lost weight from her already small frame, despite having an eating disorder history.

I have no doubt that the movie will promote full recovery for Collins’ character, nor do I doubt the film’s intentions. I also believe it will be a great conversation-starter for the general public surrounding the secrecy of eating disorders.

However, the trailer is disturbing. 

Upbeat music and triggering imagery are paired with colorful sayings like, “I am in control,” and, “I am strong.” There is a scene of a friend joking that Collins has “calorie Asperger’s.” Snap shots of group therapy and psychiatrist Keanu Reeves indicate that the movie will have a “happy ending.” The treatment center is led by a cool, hot, “unconventional” doctor (Keanu Reeves) who takes the residents to a waterfall, I guess. Sunken faced Collins asked a fellow sufferer, “How do you just eat?” The boy replies, “I’m not going to lie. I’m really f%&#ing hungry.” Cue the upbeat music and bold colors.

Let’s start with the obvious emotional disconnect between the cheerleader music that could as easily introduce Bring It On, paired with disturbing words, phrases, and images. It’s obvious the movie is trying to promote an upbeat, “pro recovery” vibe in the weirdest way.

I’m also fixated on the hot doctor thing. There is nothing realistic about a doctor somehow going on treatment outings with clients. Sorry, been to treatment, and they have mental health techs do that kind of stuff. Usually people are lucky if they see psychiatrists once every 90 days. They’re billed at way too high of a rate to take treatment residents to waterfalls. In real life, that treatment center would cost at least $100,000 per month.

I get that the upbeat attitude of the trailer intends to foreshadow a happy ending, but it doesn’t fit. There is nothing sexy or upbeat about an emaciated girl with a protruding spine in a doctor’s office, or having “calorie Asperger’s,” whatever that means. How do any of these movie clips warrant the musical equivalent of high fives and bubble gum?

This trailer had me shaking my head as a once-enthusiast of this movie. I will still be watching To The Bone, but my concerns about this narrative are seismic, especially after the trailer. If this movie opens up the conversation about eating disorders and helps sufferers feel understood, I will celebrate. At the same time, this trailer depicts the sad reality of the lack of eating disorder education to the larger public and highlights persisting stereotypes.

Oh Look, Another Young, Upper Class White Girl With Anorexia

It’s a tale that is unfortunately the plot line of almost every eating disorder movie. A white, cisgender, upper-class, long-haired, intelligent, already-thin girl who needs control develops an eating disorder. She has issues with her family, probably. At the end, she gets better or dies.

To The Bone uses these same demographics with the main character.

Groundbreaking.

The reality is that eating disorders affect those in any ethnic group, socioeconomic status, religion, sexual orientation, age, and geographic location. Moreover, the rates of eating disorders are rising in other key demographic areas: males (especially gay males), younger children, and middle aged women.

Director Marti Noxon defended this story choice, “It’s important to remember EDs is unique and To The Bone is just one of the millions of ED stories that could be told in the US at this very moment.”

Noxon is correct in that millions of ED stories could be told, but this is the one being told in the film. This cinematic choice has broad implications. Many who watch this movie might not be familiar with eating disorders, so the choice to feature a thin, white, young female will shape the way others view what an eating disorder looks like.

The problem with a white, emaciated woman of privilege being the heroine of this movie is two-fold:

  1. It does not represent the reality of eating disorders, nor does it accurately portray the significant crossover between disorders across a lifetime (e.g. shift from bulimia to anorexia to binge eating back to anorexia). I’m not going to lie, Lily Collin’s emaciated frame and overdone sunken-eye makeup makes me roll my eyes. Many people with eating disorders are not underweight. It certainly doesn’t represent the physical “norm” of someone with an eating disorder.
  2. These demographic choices of the main character highlight existing stigma. Sadly, Lily Collins’ emaciated frame will draw in viewers. I wonder what would happen if Lily Collins had gained 50 pounds for the role rather than losing weight, or if the heroine of the film was another beautiful, but overweight, actress, such as Melissa McCarthy or Queen Latifah. What about James Corden? I don’t think a film like this would be popular. Starving is the most culturally sanctioned eating disorder behavior. Do I think a story needs to be told of someone who binges and is obese as a result, for instance? Absolutely!! But it won’t be, for a long time, anyway. I’m not surprised that the dominant narrative of this movie plays into societal fascination with anorexia and the cultural thinness ideal.  I have been disgusted by interviews discussing Collins’ weight loss. “How Did an Already Thin Girl with an Anorexia History Lose More Weight to Play Someone with Anorexia?” might be a popular headline, but it’s nonsensical for those in recovery.

The problem with this one story fitting the predominant cultural narrative is that it makes us more likely to miss someone who doesn’t fit the physical “type” of Lily Collins but is displaying eating disorder behaviors. We are more likely to overlook an older female who is always in the gym or a young male who sneaks off to his car and comes back hours later smelling of food and vomit.

Moreover, those who don’t fit the mold To The Bone sets forth might feel even more shame. These are things I’ve heard or said dozens of times:

“Someone like me shouldn’t have an eating disorder.”

“I don’t look like I have an eating disorder.”

“My insurance company denied me treatment because my symptoms weren’t severe enough. I think if I lose weight they’d pay for it.”

“What if my church/ friend group/ school/ ethnic community found out I have an eating disorder? I’ll disappoint everyone.”

I am not knocking stories of women in privilege. In fact, my story is in some respects that story– white, small girl in a seemingly normal, upper-middle class environment with straight A’s develops anorexia. I had access to health care, even when my insurance refused to authorize treatment. This is not to say that I fit the standard mold entirely. There is no “normal” eating disorder story. People are dimensional, complex beings. Those of any religion, race, cultural group, age, and sexual orientation can develop an eating disorder.

My concern is that To The Bone will fall into a category of story of a woman in privilege, stifling and silencing other narratives. To the third grader chewing gum instead of eating popcorn with her friends as an attempt to reduce “baby fat,” to the male model who drinks and smokes to avoid daytime meals, and to the middle-aged housewife who finds herself needing inpatient treatment, I say this: Your story is valid. Just because To The Bone features an unrealistic, seriously emaciated young actress doesn’t mean your pain is less valid.

Eating disorders are eating disorders. They don’t discriminate.

The Mundane Reality of Eating Disorder Recovery

Keanu Reeves apparently plays an “unconventional psychiatrist” in the movie and seems both hot and cool. I worry that these unconventional methods will serve as the vehicle of healing in the movie. As if meeting a cool doctor and coming to a profound understanding of the “why” of symptoms leads to recovery.

For years, I expected when I found out the “why,” perhaps through lots and lots of digging during therapy, I would stop my eating disorder. Maybe would no longer be necessary. I was trying to find the elusive “it,” which often doesn’t come. 

I never found out why I have an eating disorder.

Does it matter, at the end of the day? To really, truly know why I developed an eating disorder, I would have to dissect my brain with the science of 200 years from now and look at every single circumstance in my first 13 years of life. I would have to look at my family history, get data from my mom’s pregnancy and my prenatal care, etc. It is impossible to know exactly why. 

I did not find recovery from talking about my family background for years or going to restaurants with my therapist in treatment. Yes, I have done these things, and to an extent, they helped, but they never got me “there,” to the elusive “it.” 

The reality of eating disorder recovery is a secret, but I’m going to tell you it anyway:

It is boring.

There, I said it. Eating disorder recovery is choosing to sneak a mid-day snack between meetings because my stomach is grumbling. It is paying the damn $100 every few weeks to check in with my dietitian. It is filling my medication on time. It is grocery shopping on Sunday night because I am tired.

It is ongoing, and it is not fun. Well, sometimes recovery is fun. Eating ice cream on a warm night is a fun part of recovery. Most parts are not fun. I hate having to wake up, knowing that the extent to which I restrict will guide my body’s well-worn path of switching to starvation mode. I hate forcing myself to eat lunch when my stomach is in turn due to anxiety, knowing that I have to eat anyway.

Boring is not Hollywood. Boring will not gain ratings. And so, I assume To The Bone will be filled with exaggerated moments of truth and insight, as well as dramatic sensational images and numbers. Showing a protruding spine is extreme, so it’s better for ratings. Getting weighed when you’re bloated and haven’t taken a shit in 2 weeks is gross and not sexy, so it will not be included.

Most of us don’t have the luxury of having a hot, cool psychiatrist taking us to waterfalls in treatment.

Real eating disorder recovery is boring and regular. It isn’t sexy or worthy of a red-carpet Netflix debut, but it is so worth it. 

Proceed with Caution

As I said before, I will be watching To The Bone on July 14th. I hope my concerns will be unfounded and that others will benefit greatly from this film. I hope I’m not going to be on the couch eating sour candy rolling my eyes because of unrealistic “aha” moments, too many protruding spines, and calorie-counting.

I know the film will open up conversation about what eating disorders are like.

I just hope it opens up good, informed conversation, conversation that heals rather than shames and stigmatizes.

Drops of Jupiter

It happens every year, as the seasonal sunshine wafts into my consciousness, and I remember….

Did you make it to the Milky Way to see the lights all faded, and that heaven is overrated?

I am almost 13 years old, and my after school regimen is set in stone. I walk home every day from my nearby middle school, make myself Easy Mac, and watch TRL (Total Request Live) on MTV with Carson Daly. I get my cheese fix, eyes glued to the music videos blasting on the screen. I remember my favorite song from that time period being “Drops of Jupiter” by Train. I listen to it over and over, and tears would roll down my face.

I do not understand why I cry, or why the emptiness inside throbs around my heart strings. My days are slow and boring, and my weekends are lonely. While other students plan end-of-school pool parties and spring sleepovers, I think about why some things are so beautiful and why others are so sad, and why there is a void in my soul, and I cry.

Tell me, did you fall for a shooting star–
One without a permanent scar?

My liposuction-obsessed nutrition teacher has a new assignment for our 7th grade class: record your food intake for a full day, and we will receive print out how our eating matches with how we should be eating. I am terrified for this day, just as I was terrified for a public weighing in gym class just a year earlier.

This is my chance, I tell myself. I want to show that I don’t have to eat Easy Mac every day, that I can forgo all snacks for sucking hard candy. Just for this day. I still remember that day, and the discipline it took to do what would later become second-nature: restriction.

The print out of my nutritional intake comes back, and it is affirmed that I had not eaten enough for the day. My reaction to this finding: relief. A deep sigh of relief that for one day I could control my pre-puberty hunger pangs. I am proud of myself, and I feel productive, much more productive than I have felt getting A’s in school. For the first time, maybe ever, I feel worthy.

The restriction doesn’t stick, because my body is growing rapidly, and I let myself honor my healthy appetite, but I will always remember this day.

And tell me, did Venus blow your mind?
Was it everything you wanted to find? 

I decide in the spring to go on a “diet.” Or more practically, I want to eat less at parties. I start trying to manipulate my food intake, and it blows up in my face. I restrict only to consume large amounts of sweets at parties anyway because I am so hungry from restricting. I grow increasingly frustrated at myself. I don’t want to be that person who gorges herself at get-togethers with friends. I start using the word fat in my deprecating self-talk. I want to be in control. I don’t want to get “fat” and get made fun of for my weight like other girls in my grade. I devote all my time and energy into making my “diet” work. I become obsessed with controlling my food intake. It doesn’t happen right away, but I am meandering, puttering around a black hole, and eventually, I fall into it.

The diet doesn’t stick.

Anorexia does.

And did you miss me while you were looking for yourself out there?

I fall hard and fast. Within only a month, a clusterfuck of genes and environment have culminated in the worst way– my genetic predisposition, personality characteristics, life stressors, and environmental/ social/ spiritual issues brew the perfect storm for anorexia’s sneaky suction cup into my life.

I know nothing about anorexia, but I am addicted to whatever it is that is happening to me. My life feels more manageable and safe. My inner loneliness is traded for obsessing about cookbooks and trying to force other people to eat. Emotional pain is replaced with constant fatigue, to the point that I wonder if I have contracted mono.

I no longer worry about parties or friends or being a failure. I am too tired, so I don’t give a shit about anything. All that matters is the scale, my weight, and my food intake.

I no longer cry. I no longer feel.

I like it.

It will change my life. It will ruin my life. It will almost kill me. But right now, in my 13-year-old starvation “high,” I like this.


Can you imagine no love, pride, deep-fried chicken?
Your best friend always sticking up for you even when I know you’re wrong
Can you imagine no first dance, freeze dried romance, five-hour phone conversation?
The best soy latte that you ever had and me

Fourteen years have passed since that season of my life, but those years have been filled with suffering and scars to show for the wear and tear. My body is weaker and has accumulated some permanent damage.

The worst thing I hear people say to me is that they wish they had my “self-control” in regards to eating. They have no idea what they are saying. Yes, my eating disorder resulted in weight loss. But at the expense of what?

I didn’t have late nights spent with friends in high school. The day of my high school graduation ceremony, in fact, I was too hazy to remember anything except for my internal debate about eating a snack. The month before I graduated from college, I was medically withdrawn and sent to treatment. Hours and hours and days and days and years and over a decade were lost of my life.

I didn’t have meaningful teenage memories. No 5 hour phone conversations with crushes. No staying out late. No eating out. Nothing fun was able to penetrate my stone wall of isolation and anorexia. For that I mourn.

And now you’re lonely looking for yourself out there.

Even now, chills run up and down my spine hearing the song “Drops of Jupiter.” I am haunted by the memory of a 13-year-old girl, barely a teenager, whose aching, throbbing soul wanted purpose and meaning and also macaroni and cheese. I am haunted about why what started as a cursory diet became a self-sustaining monster.

Looking back, I see the warning signs of anorexia in neon colors. It feels as though I am near train tracks, watching a train approaching as fast as lightning. I shout out to my sad 13-year-old-self standing in the tracks, “Get out, you have to dodge this train, whatever you do, move off those tracks.”

My aching, throbbing soul longs for answers and meaning for the long, lonely journey that has robbed me of vitality and life in the last 14 years. And yet, such answers elude me, so I must find meaning in the questions. As a perfectionist and control freak, this is unacceptable. I hate the questions, and yet I must live in them.

I can’t remember what it is like to eat without thinking about what I am eating. It is hard not to mentally tally calories when I spent over a decade memorizing the calories of every single food product ever invented.

I hope that someday my default response to stress will be to pull out a good book or do some deep breathing rather than the instantaneous craving to starve. I hope that someday I can eat a cookie without my mind analyzing the fact that I’ve eaten a cookie.

I want to know who I am. I want to get to know the existentially empty, angsty, anxious, insecure 13-year-old that is inside of me.

I don’t want to be a lonely wanderer.

Despite all the wounds and scars from a journey I never wanted to have, I can’t change what has been. Anorexia has been my past, and its after effects still impact me today. And yet, out of the tattered ruins of brokenness, I have to believe that out of ashes something beautiful will arise.

50 Shades of Disordered Eating

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Marya Hornbacher writes, “I look back on my life the way one watches a badly scripted action flick, sitting at the edge of the seat, bursting out, ‘No, no, don’t open that door! The bad guy is in there and he’ll grab you and put his hand over your mouth and tie you up and then you’ll miss the train and everything will fall apart!’ Except there is no bad guy in this tale. The person who jumped through the door and grabbed me and tied me up was, unfortunately, me. My double image, the evil skinny chick who hisses, Don’t eat, I’m not going to let you eat. I’ll let you go as soon as you’re thin, I swear I will. Everything will be okay when you’re thin. Liar.”

This week marks the National Eating Disorder Association’s annual awareness week, and the theme this year is, “I Had No Idea.” Fourteen years ago, I didn’t know anything about eating disorders. I was creating dances to Five for Fighting songs, eating Mackinac Island fudge (it’s a Michigan thing), and reeling from loneliness alone in my room.

I knew that I was miserable, that I needed middle school to end. I knew that there was a void that hours of studying a day and my endless quest to be good enough would not fill. There was a hole in my heart, and I believed that if I could fend off my age-appropriate weight gain, maybe I would feel better inside.

What I did not know is that starting on a seemingly harmless diet would turn into a rabbit hole of misery that would continue into my late 20s. I did not know that my personality traits, perfectly suited to anorexia’s grip, genetics, and my social context would culminate into the perfect storm that would change me so much, so fast, that I barely would recognize myself.

I have a picture of myself on a Florida beach on my 13th birthday, my eyes squinting at the sun. I am rocking a one piece turquoise suit, and I look… happy. I wonder if I could talk to that 13 year old now, what I would say. I wish I could hold her hand and tell her that she doesn’t have to worry about overeating at the breakfast buffet the next day. And that middle school is horrible for a lot of people. Far too many raging hormones and mean girls.

Just 2 months later after I turned 13, I have another picture of myself in a state of complete starvation. I still thought I was “fine” at that point, but my eyes tell another story. They are vacant and lifeless. My life had changed drastically as well. My Saturday morning choreography sessions had shifted to compulsively reading cookbooks and taking naps from starvation fatigue that zapped away all my energy. I was drifting farther and farther from reality.

Over a decade has passed since my eating disorder’s initial onset. I have been through more than 50 phases of restricting, bingeing, and overexercising. Here is the difficult part– I am extremely hesitant to mention the specific behaviors that I’ve done and the abuse I’ve put my body through, because I don’t want to have anything be a “how to” or trigger.

I’ll let’s put it this way: my eating and exercise over the last decade and a half has been a play in the theater of the absurd. I’ve done figure 8’s with my cyclical behaviors and manipulated people and reeled in physical pain. There have been compulsivity, vegetables, and bizarre safety foods. Revelation of the remaining 47 shades can be left to one’s imagination, or preferably, dismissed entirely. The details are irrelevant, really.

The end result has been pain for me and others… financially, relationally, physically, spiritually.

I wouldn’t have put the last 14 years onto anyone, even my worst enemy.

Sadly, I did not receive adequate early intervention for my eating disorder. Instead of hearing about eating disorders in my health class, I learned about nutrition from my liposuction, weight-loss obsessed nutrition teacher. In gym class, instead of hearing a single thing about eating disorders, I was subjected to public weigh-in’s (can we just all agree that those are shaming?).

When my eating disorder was in its infancy, I saw a therapist who stared at me for the majority of our sessions… awkward for both of us, I’m sure, and definitely not therapeutic. I lied outright to my first (okay, first few) dietitians. My doctor told me I would be sick for the rest of my life.

That is why NEDAW’s 2015 theme of early intervention is near and dear to my heart (take a free screening for ED’s here).

I implore you: take this week to educate yourself about eating disorders. You never know who you know who will thank you for the information you have. And I’m not just talking about learning only about anorexia and bulimia… read about binge eating disorder as well! It was only just “officially” recognized in the DSM-V, but it still lacks recognition but is more prevalent than anorexia and bulimia, and it can be very dangerous.

The bottom line is this:

Eating disorders are not sexy, enviable escapades. My stomach hates me (despite my profuse apologies to it), I have paid hundreds of thousands of dollars just to be here and alive writing to you today, I am constantly at risk of relapse, and I can no longer remember a time when I was completely normal about food because I’ve lived longer with an eating disorder than without it.

Early intervention and education are so important. I wonder still if I were 13 right now reading these words, taking an online screening, and hearing about eating disorders in health class instead of liposuction… would things have been different? Would I have had fewer years of suffering?

I don’t know. But I will do anything I can to prevent others from going down that road.

Nobody wants 50 shades of disordered eating. I mean how much more horrible (and less sexy) of a movie would that be? I would not see that movie. I have lived that movie. And it sucks.

Suzanne: Thoughts on Life, Death, and Eating Disorders

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I remember hearing about my mom’s cousin, Suzanne, occasionally while I was growing up. In the late 1970s or early 1980s, Suzanne had developed anorexia, at which time very little was understood about the disease. According to family members, the rest of Suzanne’s life was a “waste.” She went from hospital to hospital, getting tubes in her nose and would immediately relapse upon discharge. There was a definite value judgment in how I was told about her life. I got the sense that others perceived her as lazy and selfish. That she had been married and had a daughter, and she ruined it all. My grandma would shake her head sympathetically every time Suzanne’s name was mentioned, “It’s such a shame.”

Hearing about this as a child, I was confused why Suzanne wouldn’t just eat. I was told that there was a point you reach when you can’t get better from anorexia, that her body had shut down, and she would be sick forever. She was in her early 60s but looked at least 2 decades older.  Her bones were so weak from osteoporosis that she had difficulty walking, and she spent her life going in and out of hospitals, seeking treatment for more and more anorexia-related health conditions.  She and her 80-year-old mother, who looked like twins, were content being homebound, or so it appeared.

My family’s reaction to Suzanne was a precursor of how my family would view my own illness. After seeing for myself how my relatives would give me a disgusted once-over and say insensitive comments at family gatherings such as, “Let’s all stand around and watch Charlotte eat birthday cake,” I had a new found sense of connection and camaraderie with Suzanne. I feel like our souls connected on some level, and although we never acknowledged it, we both knew that we knew.

I always wanted to talk to her about her journey through anorexia at a time when eating disorder treatment hadn’t even developed. I wanted to hear about what led to her eating disorder, how all of those hospitalizations changed her, and what her life was like in the aftermath of the onset of the disorder. Suzanne was never open about her personal life when we saw each other. It seemed like she was a skeleton in a human body, her heart beating, but barely.  I never saw her animated or giggle or laugh or cry.  I don’t know whether she ate or drank.  I never saw her do either.  She seemed in a trance much of the time, like she wasn’t all there. I recognized that vacant look of absence of life. I had seen it before in people I knew. I had seen it in myself.

After leaving treatment in 2010, I sent her an email saying I would love to meet with her to talk about our shared experience, but I never heard back from her about that. I felt like I had something I wanted to say to her. Unfortunately, I never got the chance. In May of 2013, Suzanne died due to complications of anorexia. None of my family members bothered to tell me that she died until after the funeral.

Even though I never knew Suzanne well, I was devastated by her death. I felt like we shared a bond that traversed small talk at family gatherings. Underneath her emaciated body, I could also tell that she had an exquisite soul that was beautiful, complex, and rich. I saw the commonalities between us. We bore our pain in similar ways.

Marya Hornbacher wrote the following in her book Wasted: “You never come back, not all the way. Always, there is an odd distance between you and the people you love and the people you meet, a barrier thin as the glass of a mirror. You never come all the way out of the mirror; you stand, for the rest of your life, with one foot in this world and one in another, where everything is upside down and backward and sad.”

I don’t believe that about everyone.  A lot of people do come all the way back.  I have seen it happen.  I have seen people who I thought I would attend their funerals, and now they’re full of life, enriched, and better, completely better. People can get beyond the living hell of an eating disorder and go on to live fulfilling lives. The eating disorder voice can be silenced or muted.

However, the reality is that some people don’t come all the way back.  Suzanne never came back. That is a tragedy.

Unlike my family members, I don’t think Suzanne was lazy or wasteful.  I saw her like I see myself— having issues that are partially based on cultural, personality, and biological factors.  I see that she developed an eating disorder at the wrong time, when anorexia was not a household name and before treatment addressed eating disorders.  I see her succumbing to the seductive lure of anorexia and becoming entrenched in a lifestyle of size, restriction, and weight loss. I know, all too well, that seductive lure. I know all too well that anorexia is like a rabbit hole, and once you go in, it’s so hard to come out. And even if you do, you are forever changed.

I mourn the fact that I could never connect with Suzanne before her death. I wish I could have told her that I understand. I understand the hunger for death and starvation so much that it trumps all else. I understand and feel the deep pain that is inside of her because it is inside of me as well. I wish I could have told her that there was hope, that recovery is possible. It is not easy, but it is possible.

I would have plead with her, eaten a meal with her, or tried to avert the lost glaze in her eyes. I wish I could have told her that I loved her, and more than that, God loved her and was grieving with her. God grieved that his beautiful daughter lived her life from hospital to hospital, crippled with osteoporosis and plagued with heart difficulties. God grieved that her life was so difficult and hated the anorexia for depriving the world of his precious child prematurely.

At a family gathering a few months ago, I had the opportunity to speak with Suzanne’s brother. I told him how much his sister’s life and death meant to me, that this is what compels me to keep going. She is a causality of an unfair and cruel illness that took her away. In life, Suzanne was silenced, but her voice cannot be silenced forever because she had something important to say.

It is a fine line between death and life. If I had been born 40 years earlier, I could have faced the same fate. Eating disorders are complex, but they are treatable. I have been privileged to receive the help that I have needed, but others do not have that same luxury. The world is being deprived of the light these people have to give to others and the world. I cannot stand by and let these diseases devastate innocent victims without doing everything I can to combat it.

It gives me great comfort that Suzanne is with Jesus right now, and he is wiping away her tears, telling her that it is all over, that it is okay, she is safe now, forever.  She doesn’t have to suffer anymore.  I wonder if I will ever be able to have a conversation with her in heaven. I wonder if we’ll be able to cry together over the anguish of sin and culture and biology and death, with our robes white, washed clean by the blood of the lamb.  When we meet again, everything will be redeemed and made new. Eating disorders will be relinquished of their power, and we will be whole.

I wonder what we will talk about if I see her again someday. I wonder what I will have to tell her because I don’t know how my story will end.