More

Featuring fresh takes and real-time analysis from HuffPost's signature lineup of contributors
Aimee Liu

Aimee Liu

GET UPDATES FROM Aimee Liu
 

Breaking the Eating Disorder Stigma, One Story at a Time

Posted: 04/14/11 07:52 AM ET

In a multitude of ways, eating disorders express anxiety. If you have a history of eating disorders, you're likely sensitive and perfectionistic. When ill, you not only exaggerate the rightness or wrongness of numbers on the scale, but you may also imagine there's a right way and a wrong way to recover. Recovery's promise of change and potential for failure may loom as terrifying threats.

I've heard this from many readers who contacted me after the publication of my book "Gaining: The Truth About Life After Eating Disorders." Jessie, a young woman six months into treatment, wrote, "Recovery is a process and a unique journey for each person; I think that message needs to be shared more often, and can be a message of comfort for all those perfectionistic people in the midst of recovery who feel they are not recovering in the perfect way."

Many of the people Jessie alluded to have proven to themselves that they're "good at" eating disorders. With food restriction, they may experience a hunger high. With purging, they may go numb. With binge eating, they may zone out. Eventually, having dedicated their very identity to ED (pronounced "Ed," the name many sufferers give to the enslaving voice that eating disorders plant in their brains), many no longer know how to recognize, much less sustain, healthy relationships or more rewarding pursuits. This radical distortion of self-worth effectively enslaves an individual to ED. For those who are in the grip of their illness, health can seem an impossible goal.

Yet the majority of letters I've received prove both that recovery is possible and that it must be different for everyone. While people who are gravely ill with an eating disorder often bear an alarming resemblance to each other, those who recover do so, in large part, by exploring their own unique ways of talking, acting, thinking, feeling, and looking -- both at themselves and to the world.

This can be disturbing news to those who cling to a single rigid standard of perfection, who are so fearful of making a mistake that they dare not entertain more authentic and promising dreams. But fear thrives in the abstract. The concrete example of individuals who've moved through and beyond an eating disorder beats back fear by engendering hope.

Instead of balking at the overwhelming complexity and uncertainty of life after eating disorders, those who have hope begin to imagine themselves striking out, making free choices, and discovering their true appetites. As conversations about recovery deepen, so does the sense of personal possibility. I've witnessed this change often in my correspondences with readers over the past few years. By the hundreds, they support my contention that eating disorders are like a gun that's formed by genetics, loaded by culture and family ideals, and triggered by unbearable distress. However, the letters bear out this metaphor with stunningly unpredictable examples.

One letter came from a woman with an eating disorder who's never seen a fashion magazine and has no idea what Mary Kate Olsen or Nicole Richie look like because she's been blind from birth. Another recounted how the shock of change can trigger relapse:

After pregnancy had, I thought, cured me of eating disorders, mine resurfaced shortly after Hurricane Katrina. I stopped eating when it became clear that we were going to be displaced for a while, and I lost more than 10 pounds during the six weeks of our evacuation in Houston. Many things I thought were completely unrelated to my food issues are connected.

Several letters contained family histories of eating disorders that began with grandfathers who continued restrictive eating patterns after being forced to starve during the Holocaust. Others traced the patterns of weight-obsession to fathers and brothers who were bodybuilders and wrestlers. One woman realized in the course of our correspondence that, when she was little, her father used to excuse himself every night during their after-dinner walks to vomit by the side of the road; his eating disorder was never diagnosed, but she'd been struggling with hers for years and only now connected the dots.

As I was researching "Gaining," I discovered the enormous strides science is making both to identify the root causes of and to develop effective treatments for eating disorders. We now know that, globally, millions of women -- and men -- of every age, class, race and culture suffer from these biologically based mental illnesses. All eating disorders can be fatal, and the longer they persist, the more damage they do to mind, body and spirit. Eating disorders have a higher mortality rate than schizophrenia, alcoholism, or depression. Yet eating disorders receive only a fraction of the research funding that goes to these other conditions. And in most regions of the world, private insurance and government funding for treatment are not adequate to support the specialized care required to cure these illnesses. Why? The answer, in a word, is stigma.

The stigma that surrounds eating disorders paints them as trivial "girl problems," diets gone awry, adolescent rites of passage, or the acting out of juvenile rebels or "control freaks." Anorexia, bulimia and binge-eating disorders are sensationalized by the media as celebrity spectacles. Even the medical profession, by and large, still dismisses disordered eating as a behavioral quirk and thus fails to recognize the serious psychological threat this behavior represents. Stigma suppresses funding and attention to eating-disorder research and is a primary obstacle to adequate treatment and prevention efforts.

The truth about eating disorders is more complex, more fascinating and far more serious than most people realize. But those who have recovered realize it. Recovery gives us a golden opportunity to tell this truth, to voice our stories, and to break the stigma that surrounds one of the most disabling illnesses of our times.

I hope to inspire just this sort of activism with this blog.

*This blog is adapted from my new book RESTORING OUR BODIES, RECLAIMING OUR LIVES

 
 
 
In a multitude of ways, eating disorders express anxiety. If you have a history of eating disorders, you're likely sensitive and perfectionistic. When ill, you not only exaggerate the rightness or wro...
In a multitude of ways, eating disorders express anxiety. If you have a history of eating disorders, you're likely sensitive and perfectionistic. When ill, you not only exaggerate the rightness or wro...
 
 
  • Comments
  • 24
  • Pending Comments
  • 0
  • View FAQ
Comments are closed for this entry
View All
Favorites
Bloggers
Recency  | 
Popularity
10:05 PM on 04/18/2011
What a fantastic article. As someone who has recovered from ED-NOS, I understand first hand the difficulties faced both in society in general and even within the medical community by those suffering from eating disorders. In fact, I'm hoping to pursue a masters degree and undertake a project exploring such issues, hoping to bring to light the fact that what people think of when they think "eating disorder" might not necessarily reflect reality or the struggles of those people (who are all around us, and more or less visibly ill...). People seem to be so quick to judge and jump to the conclusion that eating disorders are simple and self imposed, and I applaud articles like yours that identify that there is more to the story than generally perceived.
09:56 AM on 04/18/2011
If children were taught some -Discipline- from an early age this would stop most eating disorders that starve themselves unlike obesity which is much harder to stop???
06:43 AM on 04/16/2011
Fantastic article! For 22 years I had diabulimia, the dual diagnosis of ED and type 1 diabetes. I've been recovered since 1997(ish). My healing took me down a spiritual path of True Selfhood, and I believe that ED showed up in my life specifically for that purpose. As you say, every healing journey is unique. When I was asked to write a "self-help" book about healing I resisted the idea for that very reason. But my memoir will be out in January 2012 (currently being retitled). My hope is that it will illuminate the path of possibility for other sufferers.
05:01 PM on 04/15/2011
I am a somewhat compulsive overeater every three days or so. Everyone once in awhile I just like to eat a whole lot of carbs all at once. Luckily, after a binge I am just not that hungry until the middle of the next day so I don't end up gaining much weight. It just lets me let off tension or something. I don't know why I do it but I am glad that it doesn't happen every day or three time a day. I don't even have to be in a bad mood to do it. I had enough food as a kid but the food my mother cooked was bad so I think I just learned to binge on anything I actually liked.
photo
HUFFPOST SUPER USER
William Anderson LMHC
Licensed Psychotherapist, Weight Control Expert
08:17 AM on 04/15/2011
I am psychotherapist and recovered compulsive overeater, now helping others with the same problem, on a mission to address the obesity epidemic. I'd like to point out that all eating disorders do not have the same foundation, causes and outcomes as anorexia and bulimia. Many people who specialize in ED seem to think that what they have learned about anorexia and bulimia applies to everyone with disordered eating. It does not. For many, compulsive overeating and obesity is a different problem. I solved my CO problem 25 years ago, losing 140 lbs. and I have maintained my success since. I'm still a "foodie", but now it's in a very healthy and satisfying way. Read my book, 'The Anderson Method' to learn what I do, and visit my website, www.TheAndersonMethod.com , to learn more about my work.
07:45 AM on 04/15/2011
A ballet major in a performing arts college, at 5'8", I once weighed 70 lbs. Anorexic and bulimic, I struggled with the disease until I could no longer fix meals for myself. I had to relinquish control and buy frozen low-calorie dinners because the ritual of fixing meals for myself occupied my days and nights. This was not just a suggestion, it was my mother's last attempt for me to save my life.
Gaining back the weight was something I couldn't handle well at all. Suddenly my hands were off the controls. I began drinking to deal with the depression and became alcoholic.
Now 110 lbs. and three years sober, I'm writing an auto-bio/ self-help book about my experiences. I find that books like yours, Aimee, and mine will help the individual by saying the one necessary thing we both needed so desperately to hear in our lives. "I understand." Thank you, Aimee for sharing your story and letting others afflicted know that you've gained more than weight back. You've gained a new perspective on life.
07:41 AM on 04/15/2011
Please don't for get about those of us with the other side of ED. The compulsive overeaters. And our stigma is such that people call us names and laugh at us, all the while we are dying inside and eating more.
photo
HUFFPOST SUPER USER
William Anderson LMHC
Licensed Psychotherapist, Weight Control Expert
08:03 AM on 04/15/2011
You are right. Compulsive overeating and obesity is a different problem. Many of those who specialize in ED do not understand this, thinking that what they know as bulimia and anorexia must be what everyone has who has a food problem. I am a psychotherapist who solved my CO problem 25 years ago, losing 140 lbs. and I have maintained my success since. I'm still a "foodie", but now it's in a very healthy and satisfying way. Read my book, 'The Anderson Method' to learn what I do, and visit my website, www.TheAndersonMethod.com , to learn more about my work.
10:13 AM on 04/15/2011
the only place I have ever covered is through OA. And that recovery has come and gone over many years. I am now in OA HOW and finding a recovery that had elluded me for many years. I have been abstinent for 9 months and have lost 70 lbs. I still have more to get off, and of course, staying abstinent after that, is the important part for me now. I feel that I do not have another recovery in me. I have gained and lost and regained the same 200 lbs. 4 times over a life time and I cannot do it again. With the help of my HP and the support of the program, today I am abstinent.
03:07 AM on 04/15/2011
Thank you Aimee for writing Gaining. I read it while at a treatment facility. It gave me the hope I needed that I too could over come this disease no matter how many years it has claimed my life. Eating disorders are curable and not a death sentence, people do recover. I agree that great strides have been made in research of EDs. While at the treatment facility I participated in as much research as possible. However, many more studies need to be conducted and the funds are limited. Being the perfectionist I was, no one but my husband knew I was being admitted. Upon my release, I made the decision to be very open about my treament and recovery. Erasing my stigma was probably the most freeing experience of my life. No more hiding, no more secrets.
08:15 AM on 04/15/2011
Earasing the Stigma of Eating Disorders
photo
HUFFPOST BLOGGER
Adia Colar
publicist by day, writer by night
01:58 PM on 04/14/2011
Thank you, Aimee, for talking about this. I don't think breaking the stigma of eating disorders can be emphasized enough (I write about breaking the stigma as well: http://blog.adiacolar.com/writing).

Thank you for also reiterating the fact that while EDs have a higher mortality rate than other mental illnesses, they receive so much less funding. I've noticed eating disorders also seem to be more trivialized than other illnesses.

By the way, I've gained so much insight from 'Gaining' and I'm looking forward to reading your latest book.
photo
HUFFPOST SUPER USER
Jazmo
Cause they're hip to the bull and hip to the lies.
01:52 PM on 04/14/2011
When my daughter was in middle school and high school, it was terrifying to me how many of her friends exhibited signs of having eating disorders. 13 year olds counting calories and refusing to eat more than 6 pretzels a day and later 16 year olds who purged after junk binges. As best I, in my simple layman's eyes, could tell, most of these young ladies were looking for some sort of control over themselves and/or their lives. This is not a simple problem and certainly not something to just "get over".
Oh and despite my personal experience being with females, this is clearly an issue that effects every one.
01:31 PM on 04/14/2011
I'm pretty certain I've got some form of disorder. It takes a lot for me to get down one meal, if you could even call it that, a day. I just don't get hungry and anything I eat is generally forced down. Usually when I tell people of this problem, the response is envy.
OverseasVet
Stationed not deployed
02:39 PM on 04/14/2011
Paxil has been shown to help but more importantly talk to a doctor.
photo
HUFFPOST COMMUNITY MODERATOR
doglove
05:46 PM on 04/14/2011
Medicinal Marijuana will make you hungry and happy.
09:40 AM on 04/14/2011
Eating disoders are commonly mistaken to be mainly an issue for women and young girls. But more and more men are coming forward admitting they suffer from it too.

http://www.angrytrainerfitness.com/2010/11/eating-issues-and-men/
09:18 AM on 04/14/2011
Recovery is different for everyone - and this is an important message - there is no one treatment that suits everyone and it is crucial those who are in the midst of an eating disorder know that it might take several attempts to recover
OverseasVet
Stationed not deployed
02:41 PM on 04/14/2011
More importantly is to get professional medical help.
08:56 AM on 04/14/2011
As someone who also has experience in this realm, I just wanted to say "thank you." I couldn't have said it better myself.
photo
HUFFPOST SUPER USER
purenergy
08:27 AM on 04/14/2011
I once "came out" to my aunt about my anorexia and she said "oh you don't have an eating disorder, your just skinny"...sigh.

If she only knew how I struggle with food everyday of my life. I love it, but I am totally neurotic about what I eat. I have found good results using a blend of amino acids as suggested in the Diet/Mood Cure by Julia Ross. My natural appetite has come back and I am slowly putting on some weight. I will probably always be a skinny girl, but I'd like to be a healthy one at least.
05:39 PM on 04/14/2011
I'd heard that when I was clinically anorexic as well; and, because I occasionally purged what little I ate, therapists and nurses determined that I must be bulimic. Hearing these things only encouraged me to deprive myself of the spinach I allowed myself to eat at the end of the day. After getting down to a very low weight (I won't give numbers; I know it's hard on anyone recovering from an ED to see numbers), I was hospitalized for another condition altogether and was made to eat regularly. I've fully recovered since then (only two significant relapses), somehow, although I'm inclined to not eat much when I'm feeling motivated in work or under a lot of stress. I can't imagine punishing or disciplining myself with food deprivation now as I did then. In retrospect, I wish that my parents and siblings had not shamed me for having an illness that made me feel like such a spectacle, that my treating sources had taken very seriously my bizarre eating habits and weighed me when I asked them not to do so, and that the people around me had cared enough to insist that I seek treatment instead of simply asking, for five or six years, "you're okay, right?" I always told them that I was fine. Anyone could see that I wasn't fine.