ED vs. DE

My friend Mary Beth recently reminded me of something important: the distinction between eating disorders and 'disordered eating.' I hadn't been that focused on these semantics but lately I see it everywhere and I am hearing it from more people: we're losing a distinction between eating disorders and disordered eating, at the same time we're blurring the lines between body image distress and body image dysmorphia.

In other words, in a zeal to raise awareness about a mental illness we've co-opted whole categories of human discomfort and distress. This is really a mistake, and threatens two very important goals. The first goal is to help society understand a very serious brain disorder, the second is to reduce a life-sucking drain on our collective mental health. Conflating these two issues is not helpful to either cause, in my opinion.

An analogy: grief and depression. We could probably go a long way toward preventing or lessening depression if no one ever suffered the loss of a loved one. Think of it: no more death. But we can't prevent death, and grief is part of life and the appreciation of life. Dealing with grief in large and small ways is an exercise in living fully and appreciating life. Sometimes grief will tear open a hole into "complicated grief" and depression. Yet we don't speak of preventing depression by banning death or talk of it.

We do this with body image and disordered eating and eating disorders. We think larger fashion models and positive role models and loving our bodies will prevent body dysmorphia and eating disorders. I don't think it will, and I'm not even convinced it will do more than blunt the impact. Like death, the struggle for a positive self-image and a good relationship with one's health is part of society and the maturation process. The fact that it goes terribly wrong so often says more to me about the fragility of mental health than it does society.

Confusing the prodrome of serious mental illness with the timeless quest for self isn't helpful to families who - knowing at a gut level something is very wrong - struggle to logically respond to a loved one who shows signs of an eating disorder or body dysmorphia. Re-focusing the search for the cause and treatment of eating disorders on society's issues may feel good, but these interventions are best targeted to those who are mentally healthy.


  1. Thank you for bringing this to light. It is a concept i hadn't put enough thought into because for me it was all lumped together into one term E.D. My mother is a perfect example of a disorderly eater. She would eat nothing for a week and a half, then she would eat a few candy bars, and a few snacks, then she would starve her self for a couple of days, etc. She was always afraid of being fat, and she would outwardly say so, however she never got obsessed with not eating, it was a cycle, and she still goes through it. She doesn't always starve, she doesn't always binge, but she never has any regularity. Shes never plummeted in weight, however because of her unstable diet she is a bit overweight. She eats minimally but when she does eat, its unhealthy nutrition less food, and then she wont eat for a bit save a few snacks here and there. She says she simply CANNOT lose weight, but i think she stays in this cycle as a way to cling to her reasons for self hatred. If she were to let go of her unhealthy habits, she would have to truly accept herself as she is and love herself heavy or thin. And deep down inside she knows that its because of her binge starve cycle that she has truly damaged her metabolism. My mother has always been very very insecure, and I believe that the reason she refuses to stabilize eating habits and lifestyle is because she is too insecure to even begin to want to see herself as she truly is. My mother is the most insecure person i have ever met.

  2. The thing I've always wondered about this is how do you know if someone has DE or ED? How do I know which one I have/had/have (denial? lol)? I mean, sure an RD and a therapist and others say I have an ED. But how does an ED look different from DE? Do you know it's an ED only when you realize how freakin' hard it is to get rid of and how persistent it is? Yes, my diagnosis is an ED, but would anything have changed (in terms of treatment, etc.) if my diagnosis were DE? I'm not sure.... so I guess my main question is: Are we good at distinguishing between ED and DE? If so, how do we distinguish?

  3. hmm, I think this is an interesting discussion, as always on your blog. I'm just writing some thoughts on this below, not trying to prove any points --just thinking aloud with you...

    On the Speaking Tour I make the important distinction when I speak of my journey, and that is: I was a normal and happy and healthy kid who skipped a meal (on purpose) one day; then out of nowhere I was a disordered eater with body image distortion, who then seemingly out of nowhere, had a combination of life-threatening eating disorders, and had a body image disorder that nearly claimed my life. When did I become mentally ill? At what point did my brain chemistry change? Personally, I feel it changed the very first day I skipped a meal, but the DSM wouldn't say I was anorexic at that point --but I sure felt anorexic in my brain, because my brain hurt from skipping just one meal.
    The point that I make when I give my speech is the well-oiled slippery slope that blurs oftentimes before the sufferer (or family or doctor or researcher) knows it. No one (whom I've yet met) sets out to have a full-blown eating disorder or a "mental illness"...they set out on a 'simple diet' or somewhat disliking their body. As we know, not everyone goes onto full-blown eating disorder, but many do. We talk about addiction to alcohol and we work to prevent alcoholism (and binge drinking) by talking about the "slippery slope leading to alcoholism"...I see talking about the range of body image and disorders as raising awareness and creating prevention, not mislabeling.
    The point of using healthier models (who the hell developed the label 'plus size' anyway?) and talking about positive self-image? Helping to prevent eating and body image disorders by fostering healthy attitudes about size and shape, which in turn fosters healthy self-esteem. We know that if we create healthy self-esteem and eating habits, we can prevent these life-threatening monsters that we label eating disorders.
    Also, I think it is important to note that disordered eating causes the same physiological and emotional disturbances that full-blown eating disorders do, not just human discomfort or stress. Disordered Eating also causes an imbalance in brain chemistry which can cause depression, anxiety and irritability; causes loss of neurons, affects cognition, mood, intellect (and according to Dr. Ed Tyson, we don't know if the damage of DE is permanent or not) We need to be on the look out for those suffering from all sorts of under-nutrition and body image woes. As someone fully recovered from the body image woes and the mental debilitation of both an ED/BI and of disordered eating --I can tell you that in life after recovering, there is no distinction of when I was suffering in terms of what was worse --when I was on a 'simple diet', when I was a "disordered eater" vs "EDNOS" vs "Bulimic" vs "Anorexic". Any amount of suffering along the spectrum of eating and body image disorders is too much and is dangerous because of the disruptions caused to your emotional and physical well-being. I think research across the board is necessary because I've known far too many people who have taken their life when they were 'simply' "disordered eaters". Trying to find the exact moment when someone becomes 'mentally ill' in this spectrum of suffering is a noble cause. I'd love research to be done on when my 'mental illness' ceased to exist during my recovery process. That would be cool to know!

  4. (cont.)I know my brain is back to beyond healthy and no longer mentally ill and I'm no longer at risk for developing an eating or body image disorder (yes, I put myself thru trials and tests to make SURE that this is a true statement) --but I can't pinpoint the moment my brain became well again. I know when my body image healed, when my eating healed, but not the 100% precise moment that my brain healed. But, maybe that's like suffering --you are on a slippery slope between disordered eating and eating disordered and in recovery, you're also on a slippery slope from recovering, to living in recovery, to recovered, to normal & healthy life.
    I wonder when the people who I know who died after just 13 months, 26 months, 3 years of disordered eating --I wonder when their body decided that they had crossed the line into mental illness? I wonder if it matters.
    Again...those are just some thoughts to continue the discussion.

    side note --this made me think also of the Cindy Bulik's research that shows that ANBP is the deadliest of the eating disorders.

  5. ...$.02 more...
    Re: this: "We think larger fashion models and positive role models and loving our bodies will prevent body dysmorphia and eating disorders. I don't think it will, and I'm not even convinced it will do more than blunt the impact."

    Not only anecdotally do I know it will do more than blunt the impact, but we also have reserach that tells us that people with negative body image have a greater likelihood of developing an eating disorder and are more likely to suffer from feelings of depression, isolation, low self-esteem, and obsessions with weight loss, etc. So...if we work to prevent those issues by promoting body love, healthier role models, etc., we can do way more than blunt the issue. The only reason I skipped lunch one day is because my mom criticized my body that very morning when she compared it to my sister's body. Had I had the self-esteem to stand up and say, "Uh, mom, we both have your genetics, so...in criticizing me, you're criticizing you. I LOVE MY BODY and it's HEALTHY, not stocky. But thanks for the input, now I'm off to school and look forward to eating lunch!" ...Had I been educated to know that my body is beautiful when it is healthy, not only when it is 'fat-free' as I was taught it needed to be, then likely I never would have skipped lunch, which led to the slippery slope... ~ Research also tells us that, "The increase of males with eating and body image disorders is due in part to the growing prevalence of male images in the media."...

    I've seen eating and body image disorders prevention work...in countless lives. But in order for it to work, you have to believe that these disorders are something that do not need to ever exist. They are preventable.

  6. I agree with the above commenter. You know, I read all this stuff that says fashion models/magazines/thin-obsessed-culture don't cause eating disorders. And I agree that it not the sole cause - if it were, the whole world would have an eating disorder. At the same time, my ED began when I decided to "get healthy." I decided to "get healthy" so I could feel fit and thin (and therefore better about myself). But would I have even ever decided to "get healthy" or decided that feeling "fit and thin" was important if I lived in a different culture? Or if I lived on Earth before all the TV/movies/magazines? I have heard that people were anorexic for religious reasons in different times. But were AS MANY people anorexic for religious reasons? Seems like there certainly must be a good number of people with EDs who might not have ever developed an ED if it wasn't for our thin-obsessed culture. I don't know why people seem to think that promoting positive body image in our society is unimportant in healing eating disorders. I'm open to understanding, I just don't get it. To me, (just from my personal experience to my conversations with other eating disordered people), it seems very, very important and very related to eating disorders.

  7. Well! I guess I stirred something up here?

    The first thing is to define our terms here. When I say "disordered eating" I mean behaviors. These behaviors can be done by people who do not have an eating disorder, and these behaviors are unhealthy and we must educate the public and get rid of them.

    An eating disorder is a mental illness. It means that the thoughts and behaviors (which include but are not limited to disordered eating) are coming from the brain and not from the outside world. Some people are wired to get these mental symptoms when they do certain things, like skip meals. Once the wire is tripped, the thoughts and behaviors are self-sustaining.

    Some people are disordered eaters because they don't understand, never learned, or don't value a healthy relationship with their bodies. Some people have disordered eating BECAUSE they have an eating disorder.

    F.R.E.E.D., please don't mistake my goals: I want us ALL to fight disordered eating. Not just because of the possibility of triggering the mental illness of an eating disorder. I think it is a toxic environment we live in and ALL of us need to address this ESPECIALLY those of us who don't have eating disorders.

    The same applies for body image distress and body dysmorphia. One is a thought process that is actively encouraged in our society and is WRONG AND HARMFUL: that our appearance is both very important and infinitely malleable.

    But some people have a brain problem called Body Dysmorphic Disorder that, again, comes from the brain and not from the outside. BDD requires different treatment than body image distress.

    I'm all for the same measures you are, but not for the same reason. I want us to change the way society treats eating and bodies because it is important for all of us, and because we must get ourselves straight if we want to be able to be healthy supports for those among us who do have the mental illnesses of eating disorders and BDD. We can't help unless we get it and live it ourselves.

    Even if EDs and BDD were cured by a magic wand tomorrow we still need to stop raising children to believe their appearance is their value and their bodies are meant to be changed to suit an external goal.

  8. So it is possible, then, that disordered eating looks the exact same, behaviorally, as eating disorders? If so, the reason the label matters is because it would influence how it is treated? How would we actually be able to identify if someone has DE or an ED if behaviors are very similar/the same?

  9. Without a way to brain scan or test blood for the presence of this, we are forced to look at thoughts and behaviors - or the downstream effects of behaviors (weight change, electrolyte problems, etc.).

    This is similar to OCD, though. We all wash our hands, some of us keep cleaner houses than other people for all kinds of reasons. But some people HAVE to wash their hands, can't sleep unless their house is a certain way, and are trapped in those thoughts.

    I have friends who are disordered eaters (yo-yo diets, skipping meals, strange food combinations/avoidances, fad miracle foods) that just do it because they want some change they think they should have.

    An eating disorder is when those behaviors are obsessive and compulsive and cause distress when they are not followed.

  10. Not like I'm pressing refresh every 5 seconds on your blog or anything..... :)

    That makes sense. I guess I didn't realize how many people with disordered eating don't feel trapped by it, don't feel like they "have" to. I don't really have any experience with just non-chalantly, casually eating in a disordered way. It always feels like something that would cause distress to change. When I regress, it always causes distress and a lot of work to get back to when I was at peace with eating more normally. I guess I didn't realize how many people out there do disordered things with food (like your friends you describe), but don't feel trapped by it.... I was just projecting my experience onto others. I was thinking that if someone does x (skips a meal, eats more than they wanted to, etc.), they must be experiencing the same thing mentally that I experience....

  11. And not that I'm responding to comments as soon as they arrive... :)

    I totally hear you!

    The reverse of what you describe is the real problem. Most people think that what someone with an eating disorder is experiencing is just like what THEY experience - and it isn't! People don't understand how HEROIC the struggle is and how DIFFICULT it is to have one's brain constantly sending messages and emotions that compel and distress. People think an eating disorder is just like their own day to day struggles to eat right and feel good in the morning mirror.

    I want parents to understand that their child's eating disorder isn't some mistaken notion or overblown vanity. It is an overpowering brain experience unlike what they know. That's why they have to step up. That's why they have to put everything else aside. That's why their kids need their help - not lame advice and criticism.

  12. I had some thoughts along this line -- and I haven't read every single word of all of your posts, but I was wondering about something.

    Eating disorders are an extreme psychopathology and therefore must be distinguished from disordered eating which may not have a biological/genetic origin, etc. To dilute the definition of EDs to include disordered eating would defeat the purpose of classifying it as a psychiatric disorder.

    I was thinking of the case of pro-anorexia sites as examples of disordered eating vs. eating disorders. . .

    If you search these sites (or various pro anorexia blogs, etc.) it is usually noticeable that many people on these sites are there because they have been attracted by the idea of being thin, pretty, etc and NOT because they suffer from an ED.

    These individuals may try in vain to "become" anorexic, but ultimately end up with only small weight reductions, compensatory binges, etc. and soon give up the idea. They may attempt to diet/starve in spurst and starts as the motivation takes them. Although they have tried SO HARD to become eating disordered (as sick as that sounds), they have not.

    This IS disordered eating and there is probably some underlying abnormal psychopathology, but I would argue that it is NOT AN -- because these individuals are NOT genetically wired for AN and to find starvation pleasurable.

    Of course, there ARE MANY individuals on pro ed sites that are VERY VERY ill regardless of weight, but I am just talking about one sub-class of people.

    I find it interesting that the media may drive girls/adolescents to strive to be thin, but only in a FEW individuals does it take on such extremes as to be labelled AN, BN or EDNOS

    Just thoughts and obviously controvesial, but I thought I would put them out there all the same.

  13. Most people who restrict their intake of food find it very difficult after awhile to continue because their biology takes over and forces them to eat more. Other people restrict, however, and their biology responds in exactly the opposite way, signalling them to eat less and less. The first group has disordered eating. The second has an eating disorder. The difference is clear cut and determined by different biological signals. We don't know exactly what those signals are, yet, but we know there are clear differences.

  14. Laura, sorry I was so slow to respond - I had to run to work! (Not literally run - ha. You have to clarify things like that around this sort of population haha)

    ANyway... I smiled so much when you wrote, "Most people think that what someone with an eating disorder is experiencing is just like what THEY experience - and it isn't! People don't understand how HEROIC the struggle is and how DIFFICULT it is to have one's brain constantly sending messages and emotions that compel and distress. People think an eating disorder is just like their own day to day struggles to eat right and feel good in the morning mirror.

    I want parents to understand that their child's eating disorder isn't some mistaken notion or overblown vanity. It is an overpowering brain experience unlike what they know. That's why they have to step up. That's why they have to put everything else aside. That's why their kids need their help - not lame advice and criticism."

    I read that and... well, it's just REALLY nice to hear from people who GET it.

    It took a REALLY long time for my parents to get it. I asked for help on multiple occasions (when I was in college), and they said, "It's a phase." (Despite having friends call them from campus telling them I'm not eating enough). I have commented on your post before, "BUT WHAT ABOUT WHEN PARENTS ARE IN DENIAL EVEN MORE THAN YOU ARE IN DENIAL?!" That was the case for me. And I really just thought that this FBT stuff only worked with parents who already weren't in denial... but it didn't seem like there was anything for people with parents who didn't know anything about EDs. But every since my really amazing therapist got me to agree to let her call my parents.. and ever since she highly suggested my parents fly up to attend a lot of family therapy... and ever since my therapist taught my family how to communicate about this... I've realized that parents can be educated. My parents (like all parents) love me so much. They were just so confused and scared - and hurt (the lies surrounding EDs don't really help). For so long, I thought my parents just were clueless and would never get it. But through parent education from my therapist, etc., my parents have shown me that they have always just wanted to be included... they just never knew how or what to do. They needed to be taught how to be included. And they have been taught. And now they're great. Just a couple of weeks ago, I was feeling a little lonely, and I said to my mom on the phone "I don't know why my food is getting off track, but it is... whatever. I don't care." My mom came up the very next day, stayed with me for 10 days, and we just cooked together, ate regular meals, and had a blast enjoying life. I know I'm lucky to have a mom who is able to take time to visit... but still. Yeah, it's kind of embarrassing that I'm 24 and this happened... but it is what it is...

    What is my point here? Maybe to say that 1) Parents just want to help their kid; 2) They can be part of the process, but they have to be taught how to be part of the process... and 3) They ahve to be taught about EDs. And 4) They want to be able to talk about food and other EDish topics with their kids, but families need help in this sort of communication. The sufferer isn't exactly articulate at explaining their situation. And the parent doesn't get that.... so the whole communication thing needs to be taught too.

    but the good thing is that IT ALL CANB E TAUGHT.

    My story is an example of parents in denial turned parents involved. And, honestly, it has made alllll off the difference. I've been in treatment for 3 years, and the vast majority of my progress has been made in the last 6 - 9 months, ever since my parents became involved.

    I know my situation isn't everyone's... but it's something worth sharing maybe...

  15. I am so grateful to all of you for this conversation. So many insightful and important remarks and difficult to address them all.

    My blog post today steals one of your responses - not because the others were less insightful but because it brings up an additional point for parents that I'm interested in.


Post a Comment

Popular Posts