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?

Wrong.

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!

Do you believe recovery just isn’t possible, at least, not for you?

Lessons from ICED 2013

I see 30-40 individuals suffering from anorexia, bulimia, binge eating disorder and disordered eating each week. Men and women, preteens through age 70+.  So short breaks and vacations are, of course, quite refreshing.

But last week’s Academy for Eating Disorders Conference, the International Conference on Eating Disorders (ICED) offered anything but relaxation.

Stimulating, inspiring, fascinating and hopeful—even these words do little justice to the conference presentations. I became pumped, and felt validated that the progress I see with my patients is not random. I was sparked by the incredible research demonstrating the progress in the understanding of eating disorders and their treatment. It only confirmed my belief that there’s reason for you, too, to know that recovery is possible.

Let me tell you about a session I was most excited about—Lisa Dawson, a PhD candidate’s research presentation entitled Recovery From Chronic Anorexia Nervosa: The Tipping Point for Change. You don’t have long-standing anorexia? Don’t stop reading. The lessons from this psychologist’s research are inspiring for all.

Dawson decided to select those individuals who recovered from anorexia—and I mean truly recovered—because by looking at this population we can figure out what elements are critical for recovery in anyone living with an eating disorder. They had to be free of anorexia for 7+ years, in an objectively normal weight range, and free of eating disorder behaviors. “You mean such people really exist?” you’re thinking? You bet. And she identified the common elements that contributed to their movement toward and their ultimate full recovery, based on extensive interviews with the participants. Here are some key points she identifies:

There are 4 stages to recovery, which individuals move through in one direction, and for differing amounts of time:

1. unready/unable to change
2. the tipping point of change
3. active pursuit of recovery
4. reflection and rehabilitation

In the first stage, people feel like they didn’t know why they were doing what they were doing (wrt ED behaviors) but felt they just couldn’t stop. They internalized the eating disorder and they perceived treatment as unhelpful. They felt misunderstood and lacked insight. In summary, recovery seemed impossible; they didn’t feel like anything they did made a difference for recovery, they had low motivation and had a sense of helplessness and hopelessness.

Over time, they realized that their eating disorder wasn’t helping them. Those who recovered also started to experience feeling understood. They were able to externalize the eating disorder and over time gained insight into their condition. They became more worn out by their eating disorder as well. Motivation increased. They started to feel that they had the power to change their situation, that they could impact their curse.

More value was placed on life outside their eating disorder. They learned skills to help them cope as they let go of their eating disorder behaviors.

Self-discovery, self-acceptance, and learning to love oneself were components of the maintenance stage.

It was a long, and slow process. But it happened.

So here’s an email I received this week from a patient of mine who, in spite of living with anorexia for more than 25 years, is now in recovery. The timing couldn't have been more fitting for this post:

"I've been continuing to do well with food.  I know I was upset at my last apt with life in general, but that did not affect my eating.  To date, I still have not purged or restricted or exercised.   Can you believe it? And... I don't want to forget to tell you so I'll share now, re: exercise...  I have been taking walks after dinner with either one of the girls or my husband or all (not every night, but several) and it didn't dawn on me til yesterday that I can go on these walks and I haven't:

• thought about how many calories I'm burning
• gone at fast pace to burn more calories
• obsessed over having to walk each and every night/same time/same pace/same path 

Instead, I:

• go on a walk if I feel like it
• enjoy whatever pace I seem to be going at, without thoughts of burning calories
• actually enjoy being present with the people I'm walking with!!! 

I do not fret if I can't make a walk.  I do not keep track of how many nights I've walked. I do not feel it's necessary if I've eaten a larger dinner. The obsession is not there!  Where did it go? I don't feel it, all I feel is the happiness that I'm going on a walk with a very loved family member where we can chat and talk and laugh. 

Huh? When did this happen?! Although it may not seem big, it really didn't hit me until yesterday that these walks are not the same walks as in the past. Not one bit. I am totally present and I completely enjoy them. And I continue to eat. Normally. I think I now know what normal is. At least, my normal. And I never, ever thought I would find "normal". And "normal" to me means:

I can eat when I'm hungry, know when I'm full, eat what I want in moderation... and because of this, I have not gained 30 lbs in 5 days as previously thought. I have gained weight.  I am working on accepting the feelings that accompany this. I think I'm in a better place to work on this. Nobody likes to gain weight, that's pretty much reality. But... I'm healthy.   

I put myself, my body, through hell. Can you imagine deliberately depriving your own body of nutrients it needs to stay alive? Can you imagine the destruction throwing up food causes? Or ingesting a plethora of pills to help further the weight loss process? How good is THAT for your body?! Oh my God, I sit and think how the hell am I still alive!!!  This has been going on for decades!  

I am at a really low point - sad, lost, confused, lost, angry, lost...  I feel like everything is out of control in my life.  Where did I turn for all those years to gain control over something when everything else felt so out of control? Ed. But what is happening now? Everything feels so out of control, yet the ONLY thing that feels IN control is my decision to eat well. Isn't this the complete opposite? What is going on here?  

So, the point of this email is to tell you that I have the strength to continue fighting this and I will succeed.  You are not going to see me relapse. Everything about this eating disorder is finally beginning to make sense. I have so much more to share but I'll save that for our next meeting. 

Lori, boy I can't begin to tell you how everything you've taught me is now landing in place and making sense and how in the world do I thank you for that?I was so, so sick.You saved my life.I still have work to do, I'm a work in progress, but slowly I'm regaining inner strength - which is just what I need to move forward. 

Thank you, thank you, thank you..."

I share this, with her permission, because while recovery is challenging, to say the least, it happens. And what I hear from her and from others confirms what Lisa Dawson shared in her study—that belief that you can recover, that change is in your hands, is essential for recovery. And that working with providers who get it and help you feel understood, and provide hope that full recovery is possible, can make all the difference.

Your thoughts?