Editor’s Note: CW-This post includes the mention of specific eating disorders thoughts/behaviors.
Over the last few months, NEDA’s policy team asked our community to answer two surveys to help us in our efforts to better serve those with eating disorders. You did not disappoint! We were pleasantly surprised by how many of you took the time to offer thoughts, and we wanted to recap what we learned and how we can use your responses in our public policy work.
As a policy team, Chevese, Kerry, and I want to know what’s most important to those affected by eating disorders. While there are multiple ways for us to work at the federal and state levels to make policy changes for our community, we realize those things can sometimes seem very specific and maybe less related to the issues you’re dealing with than would be preferred. We hope that as our work continues and expands, you’ll feel free to give us feedback, through surveys we put out and more directly if you wish. We also hope that you’ll begin to see how all the legislative and regulatory work we do supports and works toward a better and more just world for those with eating disorders, their families, those who treat them, and researchers in the field. Ultimately, our goal is to make a difference and raise awareness of eating disorders (and related issues like weight stigma) as a major public health concern.
In one survey, we asked respondents to identify the three policy issues that are of most importance to them. The results, from almost 500 of you(!!!), were:
- 81.6% – Improving access to care and insurance coverage
- 63.8% – Inclusion of eating disorders education and prevention programming in schools
- 50.4% – Increasing funding for eating disorders research
- 37.0% – Prohibiting weight-based discrimination
- 28.9% – Limiting unrealistic advertising images in media
- 11.5% – Limited the sale of diet pills to minors
- 8.3% – Other
Thank you to everyone who took the time to complete the survey! These results are very telling (and provide much more detail than we can note here) and are already informing our ongoing policy agenda.
The other survey we asked you to complete was specific to the LIVE Well Act and our efforts to move that bill forward in Congress. We needed input about your experiences in public schools that might have contributed to or exacerbated your eating disorder. We received numerous responses from across the country and were moved repeatedly by what is happening in our schools. Below are just a few of the quotes we’re using to help raise awareness among policy makers of the importance of prevention in schools:
- “Being weighed for school “health checks” was always humiliating and was always followed by feelings of deep shame. Whenever health or weight was discussed, I knew being fat was bad, and therefore felt that I was wrong…that there was something wrong with me. In high school PE, there were comments about activity being compensatory for food. For example, if we were active, then we earned a slice of pie. Activity had a HORRIBLE connotation for me as the experience was almost always embarrassing and shame inducing. I have struggled with developing a positive relationship with activity into adulthood.” (Arizona)
- “In my aerobics class, we had to weigh and measure ourselves in front of all the other girls in our class and log it. This was required for our grade. We had to track how much weight/inches we lost. This is initially what kicked off my experience with anorexia.” (California)
- “I went to a high-school with high poverty rates and I feel like we received less health programing in general then peers I know from surrounding school districts. The one thing I do remember is having to get weighed in high school in the nurse’s offices as a part of gym class. The whole class was in a big line wrapping into the hallway waiting for their turn, making it so that 5-10 peers were all in the same room as we got weighed. At the time, I was pretty deep into my eating disorder and weighed what was considered by society’s standards as thin/small. Our gym teacher would crack little jokes as each person stepped on the scale and I remember her making comments on my size while I was on the scale. For me, it felt like she was approving more of my weight than the people before me, which reinforced that the behaviors I was doing were needed to be approved of. I could also tell my peers in line with me were uncomfortable with all the comments being made. After we all had been weighed, there was a brief lesson on BMI and where we fell in it but no further information was given other than whether our weight was “okay” within these standards or not.” (Iowa)
- “In sixth grade we did a unit on nutrition where we had to keep a calorie log on myfitnesspal. It had always been there but that’s when I really started to notice the calories and how they impacted me. I was embarrassed to log all the food I ate so I guess that was the first time that I was truly ashamed of eating a “normal” amount of food. When my eating disorder got really bad in 8th I remember myfitnesspal and started using that to count calories and help restrict. I would have never known about that app had it not been for that nutrition unit, and I can’t say if it resulted in an eating disorder but I think it definitely contributed to the severity of my eating disorder.” (Kansas)
- “I believe eating disorder education and nutrition education in health class in high school heavily contributed to my eating disorder. It gave me the idea. I thought anorexia was a quick fix for my weight. I was wrong. It’s been 8 years and I still have anorexia. I believe my body dissatisfaction started when I was in 6th grade (11 years old), but it escalated to an eating disorder when I was 15 after I had been exposed to health class’s lesson on eating disorders. I vividly remember researching eating disorders more after that class, and always choosing eating disorders as my research paper topic. I guess that was telling of my future diagnosis.” (Michigan)
- “I went to a private school, but we still had nutrition and obesity prevention programming. I specifically remember one assignment where we had to keep track of our food intake for a whole week, then graph carbs vs. proteins vs. fats, etc. and share with the whole class. I remember my eating disorder firing up and immediately comparing my intake to others, in fact I can still remember the day in class when we all looked at each other’s intakes. This unhealthy tracking and comparing behaviors are behaviors that I used in the deepest pits of my eating disorder.” (Virginia)
Again, thank you to everyone who submitted responses to either survey. They are incredibly helpful, both to our overall policy strategy and to our specific legislative initiatives. Be on the lookout to more communications from the NEDA policy team to learn how you can help! If you do not receive policy-related emails from NEDA and wish to, please sign up here.