Why I'm Frustrated With National Eating Disorder Awareness Week

This week is National Eating Disorders Awareness (NEDA) week, put on by the National Eating Disorders Association.

NEDA week is supposed to be about raising awareness for eating disorders, an important and worthy cause. However, I have never in my three years of recovery felt entirely comfortable with the execution of this week. My first experience with it two years ago, I had only been in recovery for a few months and felt ashamed because I had hardly told anyone about my eating disorder. I did not feel it was in my power to bring awareness and largely avoided the week.

Last year, I was extremely depressed around this time and had taken a break from social media consumption, so I didn’t think much about the week. Now this year, I have done a lot of work writing about eating disorders and sharing my story with others, but I am still uncomfortable with how NEDA week is executed.

I think a large part of my dissatisfaction with the week comes from fearing the vulnerability of sharing my story with others. I don’t feel comfortable splashing my ED history all over social media, as some do. But at the same time, those who do curate such posts often boil a complex illness down to before and after pictures and a handful of words in a caption. Of course, this is not true for all ED activists — @nourishandeat being an inspiring exception. She posted an Instagram story on Monday reminding people that before and after photos reinforce eating disorders are only about physical appearance, which they aren’t. I was glad she was able to speak out about this fact, but her post is one exception that is drowned by the flood of before and after photos I’ve noticed posted during NEDA week.

Not only do I feel frustrated on social media with NEDA week, but I find the events claiming to bring eating disorder awareness are unproductive at best and harmful at worst. This year, there are two events I know of on my college’s campus for NEDA week, neither of which I will be attending. One is an exercise class advocating body positivity. In my experience struggling with an eating disorder, an exercise class is not the way to promote eating disorder awareness. Most of us in recovery have a very complex relationship with exercise and participating in a class, such as the one being hosted, has a lot of triggering potential. It reinforces diet culture and needing to exercise to be body positive. I was disappointed this contradictory event would even be allowed. I do think those who created the event had good intentions, but certainly they do not understand eating disorders, which is what they claim to be advocating for.

If you or someone you know has an eating disorder, call the National Eating Disorders Association helpline: 800-931-2237.

Not only this, but on my university’s campus there was also an event for taking pictures of people in celebration of body positivity. While this has less triggering potential (although surely still some), I don’t see how this raises awareness about eating disorders. Yes, body positivity is an important movement, but this particular event did not sound like it was going to include any education on EDs. I think that is why I get frustrated every year for NEDA week because what is supposed to bring awareness and educate people ends up being superficial. There is a lack of discussions on the real, complex issues that come with eating disorders.

A larger scale example is the Empire State Building being lit up blue and green for NEDA week. I live in New York and saw it lit up like this, but had no knowledge that it was lit specifically for NEDA week, as it changes colors every day. It was cool when I later read online from NEDA that it was lit for them, but again, this does not serve to truly educate people on eating disorders. No one on the street will gain anything from seeing those blue and green colors, much less understand eating disorders from it.

Additionally, shouldn’t we be advocating all year round? I mean, one week is better than nothing, but we shouldn’t need a designated week to bring awareness to eating disorders. There are a lot of people doing important work to advocate for eating disorders all year, but EDs are still largely misunderstood and their research underfunded. I truly wish there was more activism being done around EDs to help erase the stigma, advocate for resources and educate on the breadth and depth of EDs.

So now that I have been incredibly cynical, I am going to end on a more positive note (despite my ever-present depression). I know there are many great eating disorder activists out there and probably lots of great events. I do not want to discredit the good work some are doing and the week as a whole. In the spirit of awareness I do want to shed light on faults in this week’s campaign though. To me, NEDA week is a reminder of all the work that still needs to be done in advocating for eating disorder awareness. If we cannot even execute NEDA week in a way that focuses on eating disorder awareness, clearly we have a long way to go before there is a general public understanding of eating disorders.

This is the 21st century and we are allowed to call out oppression, so why not take a stand to defend those of us who have dealt with eating disorders? If we can call someone out as a racist or a sexual predator, we should be able to call them out for perpetrating eating disorders. So, start voicing your concern when you see things contributing to the development and perpetuation of eating disorder stigma and diet culture. Oppose anyone or anything that reinforces disordered thoughts around food, exercise and body image. Your friend who says she has to run to eat that donut, tell her of course not because all food is OK in moderation. That TV show that glorifies thin models, turn it off and don’t support the views that generate money for it. That brand that only comes in extremely small sizes, stop shopping there. These are small acts that can add up.

Additionally, NEDA week is not the one time of the year we are allowed to share our stories. There is power in hearing people’s stories because it helps humanize them and their struggle. Sharing my eating disorder story with people is one of the scariest things I’ve experienced, but also has rewarded me in ways I would have never expected. Helping another person struggling because she heard my story of recovery, sharing my story with friends so it is not an abstract concept and they can understand what having an eating disorder is like, and bringing awareness through writing my experiences and thoughts online, have all been important ways for me to raise awareness.

I know many of these things are hard to do, but starting small is key for bringing awareness to this illness. This combined with education on the different disorders, their symptoms, causes and the journey of recovery is what can make eating disorders understood. Overall, this NEDA week, I hope you have the courage to move past superficial events and posts and truly advocate for education to help the eating disorder community.

Follow this journey on Daring Deeply With Darcey.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

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