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.



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?


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?


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.


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

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