NEDA Week: 4 Things To Avoid

NEDA (National Eating Disorder Awareness) Week 2018 is upon us, and as many in the recovery communities around the world can attest, it is always a mixed bag. While many who seek to raise awareness during this time of year have nothing but good intentions, there are just as many who fall into the trap of using this opportunity to feed the wrong part of themselves: their eating disorder.

Is that dramatic? Sure, but drama sells. And that’s the problem.

It’s very tempting to use “shock-and-awe” tactics to raise awareness, to sell the cause through dramatization and sensationalized accounts. If you want people to listen and to take you seriously, you need to catch their attention– right? But every “hook” we use to make people pay attention, every big attempt we make at getting the world to take us seriously, runs the risk of reinforcing confirmation bias.

To say it more clearly: Many people think eating disorders are all about getting attention. When we try to get their attention in dramatic ways during events like NEDA week, we (sort of) prove them right. When we try too hard, we sabotage our own efforts.

NEDA Week puts a spotlight on the eating disorder recovery communities and opens up the floor to anyone who wants to share. In theory, that’s a wonderful thing. The problem, of course, is that some will share their stories in ways that will do more harm than good to the communities that surround them.

That being said, we at FEED Narratives are all about supporting people as they share their stories. Change only comes when we stop seeing each other as demographics, as cliches, as stereotypes, and instead see each other as unique individuals. If you are thinking of “getting real” during this year’s NEDA Week, here are five things to avoid to help better protect your community and your own conscience.


 

BEFORE AND AFTER PHOTOS:

A picture is worth a thousand words. That means each Before/After post is something like two thousand words’ worth of content, with one important distinction: it’s two sides of a story. The “before” photo, in essence, is giving your eating disorder an opportunity to speak to people and tell them it existed… and continues to exist.

The vast majority of professionals in the field of eating disorder treatment– therapists, psychiatrists, trainers, and dieticians– typically encourage their patients to delete old pictures from when they were sick, in much the same way that they have their patients throw out old clothes and remove other physical triggers from their environment. This isn’t about avoidance, about denying the past or shaming it; it is about cutting out the things in your life that your eating disorder holds dear. It’s no secret that our eating disorders often romanticize our bodies from when we were sick. Holding onto those photos is a way of preserving mementos of your eating disorder. In short, keeping those photos and then going so far as to share them shows that a part of you is still attached to your eating disorder. Posting photos of yourself when you were sick, even if it is in comparison to where you are now, is sort of like posting pictures of you and your ex on your page, and then writing a very long caption about how you’re over them.

Moreover, people who may be in a less stable place with their recovery than you could very easily see these photos. If your goal is to raise awareness and not simply seek attention, why would you provide content that could be triggering for others?

WEIGHT NUMBERS:

Again, you would think this one would be a given. And yet, without fail, every NEDA Week will bring hundreds of posts that feature this information. It’s bizarre, really. While organizations like NEDA, their various state-level EDAs, and independent treatment centers bang their heads against the wall trying to convince the public that eating disorders are not contingent about being overweight or underweight, individuals will take it upon themselves to share what their highest/lowest weight is in their personal testimonies– usually in a misguided attempt at making readers understand how serious or legitimate their illness was (and is).

However, the overwhelming majority of research says otherwise. In fact, most people with eating disorders will never be documented as underweight. Bodyweight as a whole is an unreliable measure of physical health, particularly when it comes to things as crucial as higher brain function, cardiovascular rhythms, and any number of internal processes.

Typically, when we see a post featuring weight information, it’s a red flag. Many “thinspo” and “fitspo” accounts actually advertise this information in their personal profile, unintentionally admitting that the number has become intertwined with their very sense of self. Given that there’s no valid medical precedent for including weight numbers in your story, and that it could be potentially triggering for other people struggling, what’s the point? Why does it matter?

CALORIC/MACRONUTRIENT INTAKE:

If we concede that eating disorders aren’t about the behaviors themselves, but rather the core trauma and psychological history of the patient, discussing caloric intake is– like bodyweight– irrelevant. Whether it’s simply including how little you were eating daily as part of your personal testimony, or a more detailed “in my disorder/in recovery” explanation, including details like this do more harm than good. If you’re trying to tell someone that eating disorders aren’t actually about the food or the behaviors, going into great detail about your diet or meal plan is counterintuitive.

Moreover, it speaks to your personal state of mind more than it speaks to the truth of eating disorders. Just like keeping old photos or sharing your old weight, displaying a compulsive awareness of your own meal plan– past or present– is a sign that your eating disorder has held on in some way.

This is very common in “fitspo” circles, among patients who claim to have recovered from anorexia or bulimia through a new fitness routine. To be blunt, people who claim to have recovered “through fitness/yoga/running” have usually given up on full recovery and simply settled for a shift in diagnosis and a new set of behaviors. The recent additions to the DSM of not just orthorexia but also bulimia subtypes focused on exercise speak to the prevalence of cross-addiction and diagnosis-shifting.

GRAPHIC DEPICTION OF BEHAVIORS:

Between 2009 and 2010, dozens of studies were conducted regarding psychology and epidemiology following the release of Winter Girls, a now-infamous novel that featured extremely detailed and graphic descriptions of a young woman who engaged in restrictive behaviors and self-harm. In 2017, following the release of the live-action adaptation of Thirteen Reasons Why, copycat incidents and a brief spike in teen suicide rates led to further discussion and documentation of a phenomenon known as “suicide contagion.” Shortly thereafter, streaming service Netflix would once again come under fire after releasing To The Bone, an unnecessarily graphic and stereotypical film centered around one young woman’s life with anorexia; many eating disorder programs and professionals spoke out against the film and discourage their patients and audiences from supporting it.

It’s very tempting– and almost unavoidable– to discuss our past behaviors when we try to explain our illness and subsequent recovery.  That being said, we must discuss our past behaviors with a certain degree of caution. First, we must avoid the trap of detailing our experiences in a very dramatic way, to keep from giving our audience the impression that we’re only looking for attention. Second, we must do our best to insure that we are not providing a veritable How-To manual of disordered behaviors. Eating disorders are crafty, enterprising things; it can be very easy to extrapolate instructions for disordered behaviors from someone’s personal account of their illness.


 

While these constraints may feel limiting, they are important in preserving the integrity of our own personal stories. If raising awareness is truly our goal, rather than merely seeking attention, we must do everything in our power to protect the recovery of our audience in the same way we would protect our own. There are ways to discuss what life was like in our disorders without including information that could be harmful to those around us. The sad truth is there are people out there who are just waiting for an excuse to discredit us, to write us off and to stop listening. We can do our best to avoid being dismissed and invalidated by choosing to express ourselves with discernment, patience, and grace. Telling our stories carefully and without embellishment is the key to not simply being heard, but being genuinely listened to. For our words and stories to have a positive and lasting impact, we must value and care for not just ourselves but for those reading.

Have a wonderful week. Much love to you all. Happy NEDA Week. xx

With Great Power.

For better or worse, we now live in an age of story.

I think I’ve already made my feelings about story very clear: I love it. I think stories, both real and fictional, are tremendously powerful and versatile things. And I’m not alone in that feeling.

Our love of story extends well beyond the shelves at Barnes & Noble, the spinning racks of tabloids at the grocery check-out, and the streaming services like Netflix and Hulu that bring stories directly into our homes. It’s so much more than just entertainment. For millions of years, story has been our species’ primary means for passing down our cultural histories and values. We view our lives through the lens of story, of personal history and progress. There is something inside us that is undeniably built for stories.

We love stories, and we consume them at an alarming rate; that’s why the quality of our stories is relevant to our quality of character. And in this day and age, we are offered more stories daily than we can possibly keep up with.

Like most of our natural resources—water, oil, even uranium– , stories are powerful and versatile. As such, they can be dangerous. It’s all in how we use them. To borrow the iconic mantra from one of America’s most- beloved characters:

“With great power comes great responsibility.”

Story is powerful. So what is an irresponsible story? What does that even mean?

An irresponsible story, or more accurately an irresponsible attitude towards story, is one that does not consider its own influence on its audience. .. And yes, we all have one. While people should of course be expected to be discerning and careful with what stories they seek out, it’s ethically wrong to throw the responsibility for the story we tell onto the people we tell it to.

The attitude of “if you don’t like it, don’t watch” is a selfish one. To have the freedom to tell stories is such an incredible gift. We should never use it in a way that could knowingly harm others. That should just be common sense, right?

And yet it seems people have stopped caring about how “their truth” might impact others.

Look at our culture. Our country. Even our planet. We live in an era of performative living; we share almost every aspect of our lives—our stories—with an audience larger than we can possibly understand. We have the ability to affect people on a scale never before experienced in the course of human history.

Kind of a big deal, when you think about it.

So what does it mean to share our stories responsibly? To open ourselves up and be authentic without being reckless? To guard our hearts and be discerning without burying our experience and hiding it from the world?

Where are the lines, the boundaries? Who sets them?

And when we are trying to use our story to help others—as we are with FEED Narratives–, how do we discuss sensitive topics such as eating disorders, mental illness, and trauma in a way that tells the truth without bringing about unintended consequences for those still hurting?

Some people chase “their truth” without weighing it against the very real impact it has on the world around them, ignoring the consequences it has on reality. Others deliberately obscure truth for the sake of a better story; they embellish and over-dramatize to win over the audience, and call truth that is unflattering “fake news.” But when a story is no longer anchored in truth, it begins to unravel. It does more harm than good.

This isn’t about censorship. This isn’t about “watering down” your experience or pretending things are better than they are.

It is about finding the balance between honesty and accountability, between vulnerability and selfishness. It’s about protecting the burning core of truth that sits in the heart of all stories.

How do we do it, especially if our goal is to inspire and love others? What do we owe our audience, even if it’s a metaphorical one? Are we telling our stories purely for our own sake, or are we trying to do something more?

These are the questions. That’s what our project is about. We’re working to figure it out, for ourselves and others.

We’d love to have you join us.

 

“There is no greater agony than bearing an untold story inside you.”  – Maya Angelou