Friday, April 4, 2014

You? An eating disorder? Breaking the silence on binge eating disorder and OSFED.

I'm not posting this to brag nor, I'll add, to solicit more emails. 
We can't tell just looking at you who's living with an eating disorder.
And I certainly don't want those of you who are not in such a great place to feel worse about your apparent lack of recovery; I'm aware that's how some of you may think. Perhaps you, too, have come a long way on your journey toward recovery, in ways you rarely stop to acknowledge. (SHOUT OUT: identify what you have done well with today!)

Rather, I write because of what could have happened to Leah. And about what usually happens, to those with Binge Eating Disorder and other eating disorders. So please read on!

"I hope you are doing well and a Happy Belated Birthday!  I just read your latest blog post and it made me quite happy and blessed for our time together.I am happy and proud to say that I am doing great and haven't used food to deal with my emotions.  I am still in therapy and it is a big help but I have really come to the other side with my eating disorder.  I have my moments here and there but ultimately I consider my self in recovery.  I completely think a different way about food and to me that is huge.  I have an amazing relationship with food again and for that I thank you and all of your help.  It was just a year ago - March 18, 2013 that we had our first Skype session and I was in a pretty dark place and didn't know how I was going to get through it all....and then you came into my life.

To build on what Dana wrote....thank you thank you thank you for having the confidence in me when I didn't and for being there as a guide to help me get to this amazing place in my life that I can now say I am truly thankful and happy to live. Thank you!!"
I'm driven to post after an ICED (International Conference on Eating Disorders) session about the lack of treatment for eating disorders, particularly binge eating disorder and EDNOS—Eating Disorders Not Otherwise Specified (now renamed OSFED for Other Specific Feeding or Eating Disorder)—that catch all disorders not meeting the criteria for bulimia, anorexia, and binge eating disorder.

Anorexia and to a lesser extent, bulimia, are more likely to be treated—although admittedly so many more aren't in treatment and need to be. And truly, treatment is typically not long enough or intense enough or multi-faceted enough—my thoughts, not the presenter’s.

But I write about these other conditions, these seemingly lessor eating disorders because their impact is so great; of those with eating disorders, approximately 60% of women and 83% of men have BED/EDNOS combined. And while the need for hospitalization or risk of sudden death might be lower, the impact on quality of life, mood, self-esteem, body image, control over eating is tremendous. And let's not forget GI distress, heartburn, constipation, fatigue, high cholesterol, blood sugar management issues—I could go on.

You? Living with an eating disorder?

No, it's not about size!
Sufferers are rarely identified nor have their eating behaviors addressed, contributing to minimizing their own struggle. I mean, if your doctor doesn't ask the questions why would you volunteer about your struggle? More likely, attention is paid to your BMI or 'weight issue' instead. If your loved ones don't sense your struggle with food, but rather just see your weight as a concern, maybe you're the one with the distortion. If you look good and your weight is more or less fine, what's the big deal? They have no idea how you struggle. And if everyone around you is focused in how fat their thighs are or how much weight they're gaining, then you’re certainly not the one needing treatment, right?


Back to Leah. I received her note coincidently while at the ICED conference, and invited her to stop by, as we had never met in person. She would have surely agreed to meet for lunch—as she had come a long way from relying on froyo as lunch/dinner—but time was tight for me, so chai lattes would have to do. And our meeting got me thinking about her history. She long struggled with dieting and food rules, consuming way too much of her mental energy.  That was the norm in both her family and in her peer group.

But Leah knew that this was no way to live.

As she recalls it, it took a tweet of mine that she came across, which lead her to my blog, and then my website and then my book, food to eat, to move her from knowing to doing, to taking action on making her life around food better. We skyped, and I encouraged therapy as well. And as you can see by her note, she did it.
But what if she didn't stumble upon that tweet? Would she, or you, or your friends take the step and initiate change, to move from being ruled by food? Apparently not. The stigma and shame around binge eating and EDNOS is great,as described by Stephanie Bauer, PhD, a researcher in Heidelberg, Germany, making the barrier to change hard to get over. And I learned in a session by Federico Girosi, PhD, from the University of Western Sydney, Australia, that it's hard for those with eating disorders to consider the long term consequences of their disorder, when the short term risk of seeking treatment seems great.

I'm doing my small part. You can do yours too!

Let me tell you, you are not alone. More of you struggle with binge eating disorder and other eating disorders that don't meet the criteria for anorexia or bulimia but which need to be treated!!! You are no less deserving of being freed from the burden of your disease as the person living with cancer.

Please speak up. Halt the fat talk that you hear in your home and with your friends. Start living now, regardless of your size. Ask yourself if the cost of treatment--your fear of what you might hear and how you might feel--is really greater than the cost of not seeking treatment. Do you want to live your whole life concerned about food labels and the calories you consume? Do you want to spend time at meals preoccupied with food and it's nutritional value, rather than enjoying the company of your loved ones? And do you want to carry this sentiment to your children as well? For Leah, that might've been just the tipping point she need, as she was approaching age 30. It felt like enough was enough.

Yet there was no action until perhaps she felt like somebody got it, that she'd be understood, that the risk of shame and stigma might be lower seeking help from someone whose messages she was already comfortable with.

Or in a blog?
Please share this with your friends, whether they have an eating disorder or not. If they start a conversation about dieting or body image, turn it on it's head. share the messages you're reading here and challenge them to have a better life. Check out our new book drop the diet: guided recipes for overcoming your food rules, a modified version of food to eat, rewritten with chronic dieters and binge eaters in mind—coming VERY soon!

Work on giving yourself permission to eat, and enjoying food, all foods, regardless of their fat or carb content. And seek out the services of providers who specialize in eating disorders to help guide you along the way.

Really it's not too late.
Please share on FB, Twitter, Pinterest, email or in conversation with your community! Thanks for reading. More to come from the ICED conference soon!


  1. I was someone who never would have considered myself someone with an eating disorder. I was an overeater, certainly. I was an emotional eater. However, when I was going through my divorce, I made a call to my employer's EAP to get some therapy. And my therapist just happens to be someone who specializes in eating disorders. Through two years of work, I have gotten to the point that I am willing to call my relationship with food an eating disorder. I am not really in recovery, as I still do not see it as something that is possible for me. It has been a 22-year struggle, and I still tend to minimize it in my conversations with her ("I'll just go on another diet. It will fix everything."). Anyway, I appreciate you calling a spade a spade.

    I am also a nurse, and I recently did a CE activity (I think through Medline) that was about BED, and one of the physicians who presented in the activity said that he feels it is a responsibility of all physicians to screen their overweight patients for an ED. I loved that he said that because I have had a physician tell me that I was not "that overweight" when I most certainly was. It's an uncomfortable conversation, but it's an important one.

  2. Thanks for sharing. Perhaps the medical community can take it even further and screen everyone for an eating disorder, regardless of their weight, because individuals living with eating disorders may be indistinguishable from those without an eating disorder!

  3. While my therapist usually refers to me as "anorexic," I think most people (not sure who those people are) would say I'm EDNOS. That, to me, is "not a real disorder." I have told me T that and she obviously disagrees, but to me it's not real. I'm sure you've probably heard this from people before. Maybe it's the mindset of "I'm not good enough at being anorexic so I don't really have an ED."

    I've had an ed for 21 years. None of my doctors have any idea. I'm supposed to tell my GP the next time I see here. Clearly my weight isn't low enough for concern from any of my doctors. No one has ever asked about my eating or exercise...another sign that it's not "bad enough."

    1. Or a sign that your providers are not knowledgable enough in this area or are ignorant to the questions and concerns they should be expressing? I understand where you are coming from as a fellow 'barely anorexic' or EDNOS, not sick enough to be worth the diagnosis of what makes us feel like we have valid concerns. But, really, it is clear from the comments you write how distorted your thinking is and how much you suffer. I am not that far off from you - having been restricting for 22 years, off and on, mostly on, but I can finally recognize what Lori has been describing. The constant preoccupation with food, with counting, with calories and good vs bad and how long can I go without eating and will a cough drop hold me over? Recently I have increased my intake and my brain feels better. I have to admit my surprise! But, when I am with my friends, I am actually with them, instead of planning my workout to rid myself of the calories, or figuring out just how many meals I will need to miss to make up for that one bite of cake. Really, it is no way to live - even though I am sure you have convinced yourself that all is well. I did the same thing.

      I hope you take your therapist's advice and tell your doctor so you can work with a more cohesive team of professionals to help you overcome this terrible disease. I know it is super scary and the vulnerability you feel can seem intolerable. Maybe it would even be easier if your therapist spoke to your GP - he/she not knowing your situation is not doing you any favors.

  4. I like your response, Lori. :)

    Anon, I am actually so much better than I use to be, and don't obsess about food like I use to. I mean, I obsess about it when I'm trying to figure out what to cook for lunch or dinner, but I don't obsess so much about calories anymore. I don't deny myself food, like I use to, which is progress.

    I feel like it would be so much easier to just lose a little weight before I see my doctor so that I wouldn't have to tell her, but maybe she would bring it up with me. It would be much easier if she questioned me rather than me having to tell her. I could have my T call her, I guess, but I feel like that would be weird, so I'll just have to be an adult and try and tell her myself next time I see her.

    I don't think I've convinced myself that things are "well," however I think they're pretty good and that I could (and will) probably live the rest of my life like this. Which, I guess, might stink a little when I'm having those mini freakouts, but other than that, I don't think it would be all that bad.

  5. Never normally one for reading blogs this one caught my attention and I find I'm asking myself why? Perhaps it says more about me than I'm prepared to admit. I'm a 24 year old female and can relate to most behavioural tendencies in this article. Scary for me, yes! Why? I do it for control so why does it feel like it could get out of control... to those that have had the strength of character to admit theres a problem I salute u...