21 People on They Wish Other People Understood About Their Eating Disorder

I am so excited to share this post with you all because there is so much knowledge and inspiration and truth here but before you get started I just want to put a trigger warning right up top. If discussion of eating disorder thoughts and/or behaviors is likely to trigger you, I recommend just skipping over this post and coming back next week. I did censor a couple number/weight/health specific things/piece together quotes from longer messages that some people sent that I note. However, to keep every response authentic, I quoted people word for word so if it sounds different than the way I write....that's because it is! And to everyone who responded and shared a part of their story, I'm so grateful for you and your willingness to put your message out there. With that all being said...enjoy! This is 21 people's responses to the question "what do you wish other people understood about your eating disorder/recovery?" And let me know if you like the format of this post- I enjoyed it a lot and hope to do more in the future.

"One thing I would want people to know/understand is that my weight is NOT an indicator of how much I'm struggling! I could be eating and be a health weight but that doesn't mean that I'm not struggling as much as/more than I was when I was underweight. Weight loss/gain is a side effect of an eating disorder, but it should not the focus to determine a person's struggles." - Lara

"It was not about wanting to be skinny!!!!" - H

" I wish people knew that offering me a low calorie food, 'healthy' food, or small portion of food is harmful to my recovery. I know many people do this out of love. They think giving me something that I have less anxiety about eating will help me. In reality, it gives me more anxiety about eating. It makes me think that I don't deserve to eat an energy dense food, an 'unhealthy' food, or a larger portion. It makes me feel embarrassed to eat in front of them and not eat what they have offered me. It makes the anxiety of eating what I want, what I crave, and what my body deserves much harder." - Helena

"That even though I look better and seem better after getting out of treatment AGAIN in November, I'm not cured. I've spent 15 years hating/destroying my body so changing my attitude to acceptance is GOING TO TAKE TIME." - @lucybaehrphoto

"That full recovery is not easy, but is possible; that everyone's recovery will look different; and that the most challenging part of recovery (sometimes) is trying to embrace your body, self, and balance in a society that is so disordered around food." - A

"That my weight and how it fluctuates doesn't mirror how my eating disorder is in practice. Sometimes at my biggest I've been the most restrictive, been in turmoil and felt physically worse then when I've been at my thinnest. I've been denied help for over 10 years because my BMI hasn't been low enough. I had all the physical symptoms and more importantly mental symptoms of an eating disorder but was denied treatment. I had XYZ medical problems (censored) and was mentally severely depressed and underweight for me. I cried out for help for all of those ten years but was denied treatment as my [BMI wasn't low enough]. I don't think I'll ever totally be ok because I was never given the right intense treatment I needed." -Madeline

"That I seemed okay when I really wasn't! And that not going inpatient doesn't mean it wasn't (isn't) real." - Em

"1. I wish I wasn't so petrified of people finding out about it. I worry people will look at me differently. Or treat me differently. 2. It feels nearly impossible to recover when we live in a world where despite what you might think and despite recent (AND AWESOME) body diversification movements the thin ideal is so deeply engrained we don't even realize it's power over us disordered or not." - Annie @_annie.18

"That people could understand it's not just about losing weight or getting super skinny (especially when someone in larger). Oh and sometimes I feel like I'm able to challenge myself and have something that would be a fear food for me and then a week later I might not feel like I can do it, but that doesn't mean I'm failing or relapsed." - Michelle

"That we didn't ask for our eating disorder! So many people think, oh they just really want attention or they caused it etc." - Bobbie

"I wish people understood you can struggle with anorexia and be at a normal weight or 'overweight.' I get invalidated so often because people say 'You never LOOKED like an anorectic. When I feel like people don't realize that eating disorders are MENTAL illnesses, they don't have a certain 'look.' If people give ME, a thin-passing white girl, shit for not looking anorectic enough (which is triggering AF) then I can't imagine how they would treat a marginalized person with anorexia." - Suzie, @suziethesurvivor

"Something I, personally, wish people understood is that eating disorders are not the result of pure vanity of stubbornnes on the part of individuals who just 'choose not to eat/over-exercise/binge, etc.' So many factors combined (genetics, personality factors, trauma, DIET CULTURE) and manifest in some of the most intelligent, loving, caring individuals you will EVER meet, but the answer isn't as easy as 'just eat more' or 'gain the weight and deal'. It goes so much deeper." - Emily M. 

"I wish people knew that binging can still be binging whether it's with almonds, cookies, or vegetables." - Molly @taco_bout_nutrition

"I wish people knew how damaging diet culture is to some people, now I have recovered in my eating people say to me 'it's okay to be healthy and go on little diets but just don't go extreme again' and this kills me as they don't know how much diet culture affected me and it's hard to get them to understand." - @yourmindisamazing

"That I didn't choose to be this way. I didn't wake up and decide that I wanted to put myself through this. I'm not doing it for attention. I'm sick physically and mentally and people need to understand that." - Lily

"I wish others knew how much eating disorders are inexplicably intertwined with people's identities, including religion and culture...I often feel underrepresented in the ED community due to religious beliefs. Last year, I was...gaining weight. This coincided with Ramadan, a month when Muslims fast from dusk to dawn. For the first time in my adult life, I did not fast- my doctor advised against it. People who are physically and/or mentally ill, as well as children, elderly, and menstruating/pregnant/nursing women are exempt from fasting. Logically, I knew I wasn't in any condition to fast for 30 days, but it was difficult engaging with relatives and peers partaking in fasting and spiritual reflection. I told very few family and friends I wasn't fasting since I felt so much shame, an emotion ED thrives off of. Like EDs, Ramadan goes far beyond food...I found other ways to 'feed' my soul." - Annonymous

"I wish people knew that my lowest weight doesn't define me. It doesn't make me more or less sick than before. The number did not then, nor does not now, dictate recovery. I also wish people knew I can still have an eating disorder and be not just a normal weight, but also weight restored." - Sarah @sarah.gets.stronger

"I wish people knew that not all eating disorders are started by body image. Some come about due to wanting to feel control, an effect of depression or circumstance, or many other things we don't even realize." - Lily

"I wish people would know that just because I am weight restored does not mean I am still not struggling. I wish my brother would realize that this isn't a choice I made and to stop getting frustrated at me when the voice is loud and I start panicking because I would love to just sit down and eat anything I want but I am still in the recovery process and I still have my bad days where I am scared and don't want to fight." - C

"That looking 'great' cause I was 'thin' was not a compliment and it always triggered me." - Michele @thesunwithin

"I wish people would forever get over it being about weight and look like models. I am mot by any means discrediting the experience of those who were weight shamed and used an eating disorder as a tool to get an ideal body or for any other purpose, but I wish people didn't assume that was the reason for my ED. I wish that people knew how problematic labels are and how they don't truly describe the experience of having an ED. They don't explain all the risk factors and experience that came together to create the perfect storm of what become the only way to cope with so much." - Jules @healing_every_day


Cover photo by Jake Melara 

Shifting the Narrative Around Eating Disorders: 4 Myths Busted

Today is the first day of National Eating Disorder Awareness Week so I wanted to take a bit of time to dive into the research around eating disorders and bust some (very popular) myths. I hope you’re ready cause we are divin’ in.

NEDA week.jpg

Myth #1: Eating disorders aren’t that common.
Fact: Let’s talk about how prevalent eating disorders are. For some reason, eating disorders still feel like a taboo topic in mainstream culture although it seems like maybe less so over the past few years (or maybe it’s just because I’m submerged in this work that it feels that way). According to the National Eating Disorder Association, about 30 million people (20 million women and 10 million men) will struggle with a clinically significant eating disorder at some point in their lifetime, meaning about 10% of the US population. However, it’s worth noting that that study only accounts for *clinically significant* eating disorders- meaning that doesn’t count anyone who doesn’t fit the DSM criteria perfectly or who may have subclinical EDs or who may never seek treatment and fly totally under the radar. So the fact is the number of folks who will struggle with disordered eating is likely much larger than 30 million.

Myth #2: People can just “get over” their eating disorder by eating.
Fact: This is painfully inaccurate (and a dangerous way to think about EDs). Eating disorders are rarely about the food- and “just eating” is seldom (if ever) the cure. Eating disorder recovery is a process sometimes taking months but usually taking years. It can involve therapy, nutrition counseling, medication, regular doctor’s visit, psychiatrists, treatment centers, and/or intensive programs. It can involve meal plans, journaling, exercise restriction, relearning body cues, reading books and blog posts and listening to podcasts and trying to make your body feel like home again. Like any other mental illness, it’s not something you can just “get over”. In fact, eating disorders have the highest mortality rate out of any mental illness. According to the National Association for Anorexia Nervosa, every 62 minutes someone dies as a result of his or her eating disorder. One every hour. That is a staggering number and one we can’t lose sight of when we talk about how serious eating disorders can be.

Myth #3: Eating disorders only affects young, thin, white women.
Fact: Again, this is a dangerous way to view eating disorders. Eating disorders know no boundaries- meaning they affect everyone regardless of gender, race, socioeconomic status, sexuality, ability or age. And while yes, it is true that thin, white women take up a lot of space in the online recovery communities (speaking as a thin, white women who engages with the recovery community), that doesn’t mean they are the most affected. It just means that, unfortunately, they are the most likely to get their stories told because we live in a culture that, unfortunately, has a preference for thin, white, conventionally attractive people. In reality, people of color experience eating disorders at a similar, if not increased, rate as white folks. Beyond that, people of color are statistically less likely to be asked about eating behaviors/ED symptoms by their doctor. LGBTQ+ folks are at a greater risk of eating disorders. Although only 5% of the population identifies as gay men, 42% of men who report having an ED identify as gay. Queer folks also have a higher prevalence of lifelong subclinical eating disorders than straight people. 16% of transgender college students report having an eating disorder, which is much higher than the national average. And 13% of women over the age of 50 engage in ED behaviors. The bottom line- eating disorders don’t discriminate. And we should be doing more to change the narrative around eating disorders and making everyone’s stories heard, especially those in marginalized bodies. One of my favorite organizations doing this is Trans Folks Fighting Eating Disorders, which you should absolutely check out and donate to if you feel so inclined.

Myth #4: You have to be in a thin body to have an eating disorder.
Fact: This is by far one of the most common myths I hear circulating and one of the ones that is most important to talk about. This year, NEDA Week’s theme is “Let’s Get Real” with the hopes to shift the conversation to stories we don’t often hear. As I mentioned, there are a lot of ED stories we don’t often hear- like from POC and trans folx and people in the LGBTQ+ community. But one narrative that we hardly ever hear in mainstream media that tends to  make people uncomfortable is the stories of people in larger bodies who have eating disorders. And before you go, “oh of course people in larger bodies can have eating disorders! Binge eating disorder!”, it’s important to recognize that yes, people in larger bodies can have BED (just like people in smaller bodies can) but people in larger bodies can also have restrictive eating disorders, especially given diet culture which tells them over and over again that they have to lose weight. As Deb Burgard so eloquently puts it, we prescribe in fat people the same thing we diagnose as anorexia in thin people. People in larger bodies are almost unequivocally given half thought out diet advice at their doctor’s office- whether there’s a real health concern or not (even if there is a real health concern, weight loss is seldom, if ever, the solution- but that’s a conversation for another time). And it’s easy to let some non-ED informed medical professional’s advice go to far- all the sudden instead of just forming a couple “healthy” habits, you’re down the road of measuring out every morsel of food, torturing yourself at the gym for multiple hours a day, and restricting foods/food groups. And instead of people being worried about the sudden change in weight/behavior, you get praised and rewarded. So on top of having the same symptoms as someone in a smaller body with a restrictive eating disorder, you’re actually getting rewarded for it – which is horrible, confusing, and infuriating all in one neat package. Assuming that eating disorders only happen to thin women is a dangerous assumption and one we should work hard to move away from. If you’re looking for accounts of people who have experienced an eating disorder in a larger body/not the “typical” ED body, I highly recommend starting with Clare @becomingbodypositive, Dani @iamdaniadriana and Ragen Chastain’s work (and see where the interwebs take you from there!)

The biggest takeaway from this (I hope) is that we need to change the narrative around eating disorders. We need to make room for stories that don't fit the "typical" eating disorder narrative. I'm happy to see that NEDA made their theme "Let's Get Real" this year in an effort to make this happen and give us a real look into how eating disorders affect each and every one of us. 

References (if you’re into that kinda thing):

Cover photo by Heidi Sandstrom.