This past Lobby Day with the Eating Disorders Coalition, Kari Adams of The Kari Adams Show joined us to check out the policy side of the fight against eating disorders. Already a big advocate for positive body image and self-acceptance, Kari was a great fit w/ the EDC. She interviewed a few advocates that were in town, including EDC President Johanna Kandel. Check out the videos below to get a feel for what drives EDC volunteers, why we’re passionate about eating disorders, and what keeps us coming back to Capitol Hill to promote change:
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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In April 2011, I was given the honor of presenting at the Eating Disorders Coalition’s Congressional Briefing. I can’t believe it’s already been two years – this was before I had even started this blog! Until recently, this video (along with the other speakers) had been sitting on a hard drive somewhere, but it’s finally made it online. Below are some excepts, or just scroll to the end for the full video.
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.
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I just got back from Washington, DC for another fantastic day of advocacy on Capitol Hill. I’ve been volunteering with the Eating Disorders Coalition (EDC) for six years now, and I’m honored every time to take part in it.
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.
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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Happy Eating Disorder Awareness Week! I had the pleasure of participating in a discussion on Huffington Post Live on eating disorders in men this past Thursday. I’m excited that they chose to highlight this subject during awareness week, and appreciate the thoughtful questions they had for everyone on the segment.
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.
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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Currently Listening: Murder by Death – Bitter Drink, Bitter Moon
It’s National Eating Disorder Awareness Week! Normally I try to have a ton of stuff to post and share, but life has been pretty crazy right now. If I did everything I wanted to do, I’d need about twelve more hours in the day and at least an eight day week!
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?
The New Year marks almost two years that my blog has been online. 2012 saw a lot of new visitors, and as I did last year, here are some of my favorite posts of 2012!
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.”
Now that the holidays are here, I can breathe a little easier. I’m lucky that my job is at a university, which happens to shut down for almost two whole weeks over the holidays! Which means it’s time to get around to updating this page!
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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In case you missed it last night, I had a last-minute invitation by the Huffington Post to join a discussion on the public perception of eating disorders! Also featured in the video are Claire Glass, a blogger who recently shared a story about her grandmtother’s life-long eating disorder, and two treatment professionals, Kim Dennis and Laura Discipio.
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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If you’ve been through recovery, I’m wondering – how has your recovery been impacted (positively, negatively?) when the recovery culture dialogue turns to the almighty? It seems to happen a lot, and there’s a lot of faith-based stuff out there. And if that helps you recover, then I’m all for it! Everyone’s recovery will look a little different and be unique to them, and hope can be found in many different forms.
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.”
Welcome to my blog! My name is Matt Wetsel and I'm a Richmond, VA based eating disorder writer and activist. Recovered from anorexia, I'm committed to educating people about eating disorders, challenging body image standards, and questioning gender constructs as they relate to mental health and the way we regard our bodies.
