Johanna Kandel is the current President of the Eating Disorders Coalition, founder of the Alliance for Eating Disorders Awareness, and author of Life Beyond Your Eating Disorder.

Suzanne Lewandowski is the founder of the Eating Disorders Collaborative of Massachusetts and a current Junior Board member of the Eating Disorders Coalition.

Seda is the founder of the Cambridge Eating Disorder Center, which offers a spectrum of recovery services including residential and outpatient programs.

Gail is recovered from an eating disorder and the founder of the F.R.E.E.D. Foundation, a fundraiser for treatment scholarships. You can read more about Gail and the foundation here.

We actually don’t know who this guy is. I hear they found him wandering aimlessly around the House of Representatives, clearly sleep-deprived and mumbling something about locating the nearest Metro stop.

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I am proof that eating disorders DO NOT discriminate.  It is not a disease of vanity. It is not a “woman’s disease.” It is not a “phase.” It is a life-threatening mental illness epidemic. Despite the data we have that demonstrate that millions of Americans – men and women alike – currently suffer from eating disorders, the shoulder-shrug excuses that are used to trivialize and dismiss eating disorders persist. Despite the fact that upwards of 20% of all anorexics will die as a direct result of their eating disorder, there is a lack of awareness in virtually every level of support that should be there to help someone. From the social level with friends and family, to health care providers, emergency room doctors, and of course, insurance companies.

When I should have been making friends, focusing on school work, and growing into the person I was going to become, I instead lost two years of my life to anorexia, two years of my life that I can’t ever get back. My senior year in high school, I had a falling out with some close friends, and fell into a deep depression. I lost my appetite, and couldn’t sleep. I didn’t know what was happening – everything occurred so quickly. Though I had visibly lost weight, it was a few months after my problems began that I ever bothered weighing myself. Co-workers who didn’t know me well would compliment me on the weight I’d lost. My friends could tell something was wrong, they just didn’t know how to approach it. Not knowing what was wrong myself, when they’d ask if I was OK I would insist that I was fine (a word that a good friend of mine refers to as ‘the real F-word’). Eventually, someone at work asked me how much weight I had lost. The thought hadn’t crossed my mind, and out of sheer curiosity I went home and weighed myself, and my bitter relationship with numbers began.

In those early months I never had ‘goal weights’ or anything else – it was all curiosity. The more I lost, though, and the more my body reflected it, the more I started to wonder how low I could actually get. It’s important to note that, at the time, you could say I was on auto-pilot. I was aware of what I was doing but I was never really in control. Our bodies depend on the intake of food and on regular sleep to function properly, and when deprived of those things your judgment and emotions can get quite disrupted, among other things. I didn’t just wakes up one morning and decide that I was going to be anorexic, any more than one might decide to become a drug addict or to have cancer.

My family and friends could tell something was wrong, but they didn’t know the right questions to ask. I skipped enough classes that my teachers started to worry, too, and even the guidance counselor checked in with me. They could all see I was losing weight very quickly, but they danced around it, wondering if I was depressed or if things were “OK at home”. Maybe they just weren’t used to screening eighteen year-old males for eating disorders. Either way it’s not as if I blame them, I was as clueless as they were. I went through my own denial, listing off all the reasons that I couldn’t be anorexic. “That only happens to models.” “You’ve just been depressed and haven’t felt like eating.” “It’s not that serious, things’ will be OK.”

… My story is not a unique one, and until we have the FREED Act, millions of others will continue to struggle. Children are being exposed to an endless stream of messages and advertising that tells them they should dislike their bodies, and dieting is becoming common among elementary school girls who haven’t even started puberty. This is a problem which is only going to get worse until there is a real intervention on the federal level.

By passing the FREED Act, Congress has the power to give health professionals the tools they need to identify, treat and prevent eating disorders effectively. They have the power to make sure no one has to go through what I went through ever again.

Congress has the power to make sure no one else has to become a statistic. I have friends who are struggling with eating disorders who I’ve encouraged to come to Capitol Hill with me for EDC National Lobby Day. Every day and every month that they don’t get the help they need to recover, I wonder if they’ll be able to make the trip to Capitol Hill with me, or if I’m going to have to bring their picture and memory instead.

And so I’m asking. I’m pleading. Pass the FREED Act. Thank you.

You can access the full speech transcript here.

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All photos courtesy of Jim Knapp unless noted.

The EDC advocates for legislative reform to better improve access to treatment, advance research, and educate both professionals and the public about eating disorders. If you or someone you know have ever had to seek treatment, then you know it’s often difficult. This is because of a complicated mix of disputes over diagnosis, established guidelines, and a misunderstanding of eating disorders.

Even though the American Psychiatric Association has compiled very specific and detailed guidelines for treatment, insurance companies have no obligation to follow them and often make up their own guidelines – which physicians often don’t have access to even while treating patients. So even if treatment is approved, it’s hard to know if it will be the kind of comprehensive treatment a particular patient needs.

Jeanine Cogan & Kathleen MacDonald. Jeanine is the EDC Policy Director. Kathleen is the former EDC Policy Assistant and now applies her expertise at Kantor & Kantor LLP.

The legislation the EDC is advocating for is called the Federal Response to the Elimination of Eating Disorders (FREED) Act, and it would help address these problems. It also contains provisions for helping medical professionals know what to look for and how to treat the specific physical health problems that can threaten the lives of eating disorder patients. You can read a full summary of the FREED Act here, along with some background and history here.

[Fun fact: the idea behind FREED, the elimination of eating disorders, was also the inspiration for my blog title!]

The EDC wouldn’t exist if not for the tireless work of the advocates who make up the organization. Spring 2013 marks the first event under the leadership of new EDC President Johanna S. Kandel, author of Life Beyond Your Eating Disorder. A common statement from first-time advocates is often: “What difference does my being here make?”

Well, Johanna came to Capitol Hill ten years ago to lobby with the EDC and got a meeting with her Congressional Representative, Ted Deutch. Their meeting educated him about eating disorders and their severity, as well as putting a human face on them. We can quote statistics all day long, but sometimes a personal testimony says more than amount of data.

Now in 2013, Representative Deutch is championing the FREED Act in the House of Representatives and has made eating disorders a priority during this Congressional session – and it’s all because of Johanna’s hard work and advocacy.

Johanna Kandel (far left) with EDC board members, guest speakers, and Ted Deutch.

Myself and Ted Deutch after the briefing. So grateful for his commitment to FREED & the EDC!
(Also, when did my hair get so long??)

I also want to say thanks to the offices that took the time to meet with the Virginia Team: Senator Mark Warner, Senator Tim Kaine, Representative Bobby Scott, and Representative Morgan Griffith. Virginia is already a leader on eating disorders with HB1406 establishing screenings in public schools, and I’m looking forward to Virginia carrying the torch and seeing our Congressional reps take up the cause!

Our next Lobby Day is September 18, 2013. Even if you can’t make it to DC, there are plenty of ways you can make a difference and advocate for FREED! Consider doing the following:

• contact the local offices for your Congressional Representatives in your district to meet with them and/or their staff
• write letters to their offices and share your own stories about how eating disorders have affected your lives, asking them to support FREED
• donate to the EDC to support their ability to advocate on Capitol Hill, or hold a fundraiser of your own

Shout-out t0 Kari Adams of The Kari Adams Show for making the trip to DC and cover the policy side of eating disorders! Below is an interview she did with Gail Schoenbach, the Executive Director of the F.R.E.E.D. Foundation and current EDC Treasurer, along with some other pictures from Lobby Day!

Some seriously perfect weather on Captiol Hill.

Ran into the Minnesota team on our way to the briefing! (Thanks Britt for the picture!)

Team Leader meeting at the reception the night before. So honored to be working with so many amazing people! Also, I’m the only one with my eyes closed.

EDC President Johanna Kandel introducing the next speaker at the Congressional Briefing.

Team leader brainstorming!

Myself and other advocates during the reception.

Full photo sets available on the EDC Facebook page. Videos from the briefing will be made online shortly. For past Lobby Day coverage and testimonials, click here to search for all posts tagged ‘FREED’.

So what are you waiting for? Come join us in Washington, DC and help us END eating disorders!

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I had another great opportunity to take part in a segment on body image and males. This segment was especially interesting to me because it had a broader focus, particularly due to the contributions of Alan Aragon. Alan is a nutrition and fitness expert, getting his start in the gym as a personal trainer. Nowadays he finds himself writing, blogging, and fairly well-known online on the fitness forums he helps moderate. I’m so detached from body-building and gym culture that I forget how many men are wrapped up in that stuff, so I got a lot out of the discussion too.

Here’s the full list of panelists:

Claire Mysko @ClaireMysko
Author, “Does This Pregnancy Make Me Look Fat?”
clairemysko.com

Niobe Way @youthresistance
Professor of Applied Psychology, New York University
niobeway.com

Ryan Salonen
Actor
IMDB credits

Alan Aragon
Nutrition guru
alanaragon.com

Simon Metin @smetin92
Medical Student, King’s College, Cambridge
Simon Metin on YouTube

I want to thank everyone at The Stream for covering this topic, asking good questions, and staying away from shock value media like lowest weights or the like. Also, it was great to be on Claire, whom I’ve had a few Twitter exchanges with but never anything like this.

Alright, I’m off to prepare for next week with the Eating Disorders Coalition. Maybe I’ll see you on Capitol Hill?

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You can watch the full segment below, which includes a young man named Alberto De Leon in Chicago who is currently in recovery from an eating disorder; Margaret Johnson, the editor for HuffPost Women; Amanda Webster, an Australian mother who’s son developed anorexia in childhood; and Dr. Gregory Jantz, an eating disorder specialist in Seattle. You can watch the full video below:

You may notice that the title on the video says, “Manorexia on the Rise.” Well, I don’t care for that term one bit, and I’m happy to report that when I emailed my contact on the production team, they changed it on the main video page and wherever else it was possible. Unfortunately, it’s much harder to edit out of the video stream, but I want to extend my gratitude for the quick response they had in changing it where they could.

I’ve written about my disdain for that term in the past:

If you’ve been keeping up with me on here, you have probably heard me talk about “gender inclusivity.” I believe for ED treatment, research, and prevention to advance, it has to be fully inclusive and not just catered to the majority. I almost slipped through the cracks of the resources available to me during my own recovery because it was all designed for women, and I mourn for other boys and men who find themselves in similar circumstances.

I grimaced at the original title because taking a word like “anorexia” and altering it to reference EDs in men carries the implication that men experience it differently in some way – otherwise, they would just call it anorexia, right? …In short, it by default is not gender inclusive.

It won’t do us any good to take notice of how our recovery culture is feminized if we just turn around and make it gendered in the opposite direction. Eating disorders are, more than anything, a matter of public health concern.

Thanks again to Huffington Post Live for having me, and for responding to my request regarding the segment title so quickly. If more media outlets handled this issue with the same level of care, we’d all be the better for it.

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Which is kind of a salient point for talking about NEDAW. Taking on more than you can handle or have time for can be a recipe for disaster, and I learned a long time ago that sometimes you just gotta let some things go.

Have you heard of NORMAL in Schools? They promote positive body image and eating disorder education  with a special focus on schools and universities. I’m now contributing to their blog about once a month, which means I will occasionally be dividing my writing between this site and theirs. My first post is about one of my favorite topics – gender inclusivity! It’s adapted in part from a seminar paper I worked on last year which discusses the gendering of eating disorder recovery culture:

Maybe you’ve never considered the idea that we have a gendered recovery culture. As a male who suffered from anorexia, though, I know it all too well. To create space and dialogue which is gender-inclusive means we need to examine the reasons that negative body image and eating disorders have historically been associated with women or regarded as a “women’s problem.” Given that it’s Eating Disorder Awareness Week, this seems a fitting topic. After all, we have a huge recovery culture which has a cursory awareness of eating disorders in males but rarely includes them in a visible way.
-from ‘What the Heck is Gender Inclusivity?‘

While you’re there, check out other great contributors like Robyn Farrell, Caroline Rothstein, Becky Henry, and Carolin Costyn! I must say, it’s seriously an honor to have my writing appearing alongside so many other awesome voices.

Stay tuned for more updates for NEDAW 2013. What are you doing this week to educate and advocate for eating disorders? For yourself?

1) January 13, 2012: Smash Your Scale (And Anything Else Holding You Back!)
One of my favorite posts, and also one of my favorite stories to tell. The avatar for my blog (the smashed scale up in the corner) isn’t some stock photo – it’s actually the scale I smashed back in 2005 behind the alley of my first apartment.
“I can’t really understate how good it felt to smash that evil contraption. It was one of the biggest enablers of the eating disorder, and there was no way I could pretend that I was going to get better and still keep it around.”

2) February 6, 2012: Reasons for Recovery Blog Series: Part 2
For the month of February leading up to National Eating Disorder Awareness Week, myself and a bunch of other writers did a blog series about Reasons for Recovery. You can check out all the posts by following this link.
From the post:
“A lot of people with eating disorders struggle with negative self-talk. I think this is one of the most important things one can do: to counter it with a correction and remind oneself of what’s true. The eating disorder makes you say, “I can’t do this! It’s impossible!” but we counter that with, “I’m having trouble doing this. It’s very hard for me, but it is not impossible.”

It’s almost like learning to speak a new language – the language of recovery. The eating disorder inserts its own voice into your mind and thoughts, masquerading them as one’s own. It has a very limited vocabulary, consisting of words and phrases to make one feel bad about themselves. You could almost say we get tricked into speaking this language, engaging in negative self-talk and focusing on arbitrary numbers like weight or caloric information instead of how we feel. The language of recovery, though, has no room for self-deprecation, negative self-talk, or the futile effort of measuring self-worth with a scale.”

3) March , 2012: Matt Ryd Testimony
Definitely check this one out. Matt Ryd is a musician from Chicago who made this really touching video about his struggle with eating disorders. The music in the video is his own, and the whole thing really draws attention to how eating disorders aren’t a women’s issue or a men’s issue, but a public health issue. Watch it!

4) April 21, 2012: The Unlikely Connection Between Punk Rock, Sobriety, and Eating Disorders

If it wasn’t for punk music and a subculture that was anti-substance use, my recovery would have been a whole lot harder. I think it’s important to consider the way substances (especially alcohol) can affect our well-being since they’re so common in our society and so socially acceptable.

“When I developed an eating disorder in college, I believe now that if I hadn’t been disinterested in drinking or doing drugs that I would have been a lot worse off, as I would have had one more way to numb myself from how horrible I felt. When anorexia was in control, I hated myself and the entire world. I don’t think I would have found the motivation and will to seek recovery if I had been open to drinking, and I’m eternally grateful for the factors and people in my life that led me to being able to verbalize something I had always felt but never felt welcomed to express among my peers, that I just had no interest in using intoxicants.
What do you think? Substance use, peer pressure, and societal acceptance/encouragement of things like drinking and dieting can make your head spin and I always think about how they impact recovery. How have these issues affected your life or recovery?”

5) May 24, 2012: In Remembrance: Reanna’s Story
At the Spring 2012 Lobby Day with the Eating Disorders Coalition, I met Tracy Smith, the mother of a girl who died from her eating disorder. With her permission, I shared her testimony from the EDC Congressional Briefing. It’s an all-too-important, heart-breaking reminder that eating disorders are life-threatening diseases which desperately need more research, prevention, and education.

6) July 2, 2012: Fit, or Fitting In?
It’s 2013 and I’m still sick of this “fitspo” crap. Appearances can be deceiving, which couldn’t be better illustrated than by Sarah Robles, the strongest woman person in America. Despite being an Olympic athlete, she struggled to get an endorsement and could barely pay her rent. If you passed Sarah on the street, you might assume she was “out of shape” due to the size of her body, but in reality she’s actually an extremely accomplished athlete!

It’s proof that this fitspo crap is really just an endorsement and idealization of a specific body type. You don’t need to be a certain weight or even look a certain way to be healthy or “in shape”, no matter what anyone tells you.

7) August 13, 2012: Skin Deep: Eating Disorder Recovery Tattoos
My most popular post to date, and with good reason – the stories and art that readers shared are incredible! Even behind the simple designs are stories of courage and hard-fought battles back to health. I’ve had a few inquiries about doing a follow-up post, so if you have any recovery tattoos you’d like to show off, email me at EDsNoMore@gmail.com!

8) September 10, 2012: Secular Spirituality, Atheism, and Recovery
Faith-based recovery programs are great for people who come from religious backgrounds, but what if you don’t have a faith tradition or stumble over the G-word? Here’s another one that got a lot of you talking and thinking about how to own your recovery when you fall outside of the conventional approaches.
“…It makes me wonder how religious language and faith-based programs influence recovery – particularly if you don’t regard the word ‘God’ as a proper noun. Have you ever found yourself held back when the G-word gets dropped, as though someone hit the breaks and suddenly you feel completely out of place? How have you dealt with it?“

Those are my favorite posts from 2012. Thanks for reading, commenting, sharing links, and keeping the conversation going about body image and recovery. In 2013, how will you think about your self, your health, and your well-being without thinking about things like weight?

If you comment, please don’t discuss specific weight gain/loss, lbs, weights, or any food-related numbers. Thanks!

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Holidays used to be a big challenge for me. Being around family, having food prepared for you or going out to restaurants you aren’t used to, your whole schedule thrown off… sometimes that chance to relax is actually more stressful than your day-to-day. Over the years I learned that it’s the times when you’re challenged that it’s most important to stick to what works for you and put recovery first.

Maybe you want to get out of going to that restaurant, or just make excuses to avoid meals with other people all together. But I think the best gift you can give to yourself is to do things for you and not whatever negative voice in your head might tell you otherwise. Sure, it’s easier said than done, but recovery is something you do, meal by meal, day by day.

If you’re working, in school, or both, the holidays (basically all of November and December, if you’re anything like the average American!) can just add stress and make it harder to focus on taking care of yourself. But those are the times when it’s the absolute most important to maintain healthy choices and self-care. When you find yourself overwhelmed, where you do go for a breath of fresh air?

If you’ve struggled with an ED in the past, odds are that one of the reflexive reactions is to slip back into those kinds of patterns. That’s why it’s really important to have a plan for taking good care of yourself. Having a few friends who understand where you’re coming from that you know you can call in the moment when you’re struggling can go a long way. Why not go for a walk, a drive, a bike ride? Call a friend?

We all need a breath of fresh air sometimes. The question is, where do you go to get it? Do you turn back to old habits, or do you seek out new ways of dealing?

When you’re in the moment and all that anxiety about food feels so overpowering, it’s easy to feel as though there’s no other option but to engage in disordered eating behavior. But the best gift you can give to yourself, no matter what holiday you may or may not celebrate, is the gift of self-nurturance and self-care.

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You can watch below:

Claire’s story is particularly moving and important, since, along with people “like me” who don’t fit the stereotypical perception of who can have an eating disorder, elderly people are often underrepresented or invisible in the conversation. You can read the full write-up about her grandmother here.

Special thanks to Jenny Churchill and everyone at Huffington Post Live for handling this subject so seriously and taking the time to talk about it! Responsible journalism is incredibly important when talking about eating disorders, because it’s already such a sensitive subject that it can be easy to make sensationalist stories which have shock value but lack substance. Both for this segment and another article I was interviewed for last year, they have an excellent track record!

PS – I’m on Google+ now. I don’t quite get it yet, but don’t let that stop you from adding me to your circles or squares.

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But for nonbelievers, the prevalence of religious language in recovery can present an additional hurdle – I know it did for me. Early in my recovery, before I got into more structured group therapy with a counselor, I was attending Twelve-Step groups that focused on eating disorders/disordered eating. I couldn’t recommend them for everyone, but it was what I needed at the time. I had hit an all-time low, and a friend told me about a group that met less than two miles away from where I lived downtown. I went the very next day, desperate for anything that might assuage the constant misery and physical discomfort I was in.

I honestly thought that I was going to go there, they would tell me what to do, I would do it and I would get better – just like going to the doctor and getting a prescription. I quickly found out that that wasn’t the case. But what I did find was a new perspective and a sense of hope – the people there spoke about their struggles with honesty and clarity, as well as an unexpected humility. One of the things emphasized in all Twelve-Step fellowships is admitting you don’t have control over everything, and as you work through that it can really give you some room to breathe. However, part of that admitting you don’t have control everything (a notion that often clashes with our Western sense of independence and individuality – but I challenge you to sneeze with your eyes open or to prevent the sun from setting) is turning that control over to a “Higher Power.”

Ugh.

At least, that’s what I said back when I was 19. It was less of a hurdle and more of a brick wall. I had never been comfortable with the personified notion of God. Just typing the word God I feel conflicted. As I write this, I debate if I should put it in quotes or make the ‘g’ lowercase. And back then, when the word ‘God’ was invoked in meetings or by friends, I would feel myself tune out because it’s something I just couldn’t relate to.

The concept of a Higher Power (HP for short) is intentionally vague in the fellowship groups to allow for as broad an interpretation as you like. Those who already had an established faith took the idea quickly, fitting HP into their Christian or Islamic traditions and finding additional insight into their struggles as they tapped into years of religious practice and understanding. Others found creative, non-religious ways to regard their HP. It could be anything, really. But no one can figure it out for you, because it’s quite personal.

I think that extreme personal nature of it is one of the reasons I was and am so resistant to even using the word ‘God’, because I don’t know that it’s possible for anyone to have the exact same definition or understanding as someone else. I was always afraid if I said it, someone would hear it through the understanding of their own religious practice and interpret what I said through that.

This is especially an issue in the West. The dialogue among atheists most often seems to be in reference to Christianity – which is somewhat understandable since it’s the predominant religion. But even if you completely reject Christianity, I’m not sure that all notions of spirituality or a higher power have to go out the door with it. Just like how if you have some life-changing moment and your belief in an HP is confirmed, I honestly don’t know what leads someone to attribute it directly to Jesus, Allah, or Zeus. And I don’t mean that in a condescending way – I just think there’s a bigger distance than we often acknowledge between a seemingly miraculous event and the embracing of a particular faith in response.

When I was younger and friends would talk about things they felt when they would pray or while they were in church, I used to envy them, because no matter how hard I tried, I never felt anything. Those dots never connected; the light switch never flicked on. I just felt silly. And I would envy those who said they did feel something because it felt like there was something wrong with me.

Never feeling any personal connection to it, I settled on agnosticism for awhile. But like the word ‘God’, I think agnosticism often means a little something different for everyone. It’s a vague term and is more a matter of negation – it does a good job of saying what you don’t believe, but doesn’t really do much in figuring what you do believe. I think I also settled on agnosticism because there is often stigma attached to outright rejecting religion and using the word ‘atheist’ to describe oneself. For those whose religion has a big influence on their lives, such a concept must seem so foreign and empty that they can’t even fathom it. And, even if you’re an atheist, I think there’s value in figuring out what you do believe. I also think that hope is universal and can be found in many different ways.

Hope for me is about finding intrinsic value in living, and finding ways that you can have a positive effect on others no matter how much things might not happen the way you want them to. Everyone suffers. Some of us suffer far greater than others, and some of us have very comfortable lives. But we all still suffer, and we all will eventually die. Some might think that’s a depressing thought, but I don’t. On the contrary, our common existence in those two things outweighs any superficial differences we might fight over. If we could all recognize our desire to avoid suffering as a universal desire in others, I think the world would be a much better place.

It’s that line of thought that helped me work towards defining a HP. If I didn’t care for myself first, I couldn’t be of any use to other people. And the people I met in those meetings gave me hope that I was capable of recovery too. If I didn’t believe in myself, then I never would have recovered.

It makes me wonder how religious language and faith-based programs influence recovery – particularly if you don’t regard the word ‘God’ as a proper noun. Have you ever found yourself held back when the G-word gets dropped, as though someone hit the breaks and suddenly you feel completely out of place? How have you dealt with it?

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