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.
Like this post? Stay up to date by ‘Liking’ my blog on Facebook, following me on Twitter or Tumblr, subscribe via email, or just leave me a comment to let me know what you think!
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.
Like this post? Stay up to date by ‘Liking’ my blog on Facebook, following me on Twitter or Tumblr, subscribe via email, or just leave me a comment to let me know what you think!
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!
Like this post? Stay up to date by ‘Liking’ my blog on Facebook, following me on Twitter or Tumblr, subscribe via email, or just leave me a comment to let me know what you think!
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.
Like this post? Stay up to date by ‘Liking’ my blog on Facebook, following me on Twitter or Tumblr, subscribe via email, or just leave me a comment to let me know what you think!
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?
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.
Like this post? Stay up to date by ‘Liking’ my blog on Facebook, following me on Twitter or Tumblr, subscribe via email, or just leave me a comment to let me know what you think!
Do you know what the FREED Act is? It’s the Federal Response to the Elimination of Eating Disorders, and it’s a bill that we need YOUR help to pass.
For over a decade, the Eating Disorders Coalition (EDC) has been active on Capitol Hill working with the federal government to help make eating disorders a federal health priority. With the highest mortality rate of any mental health disorder, we need a bill like the FREED Act to help those who suffer from eating disorders get the help they need and deserve.
I’ve been volunteering with the EDC for 5 years now, and am currently a Junior Board member. Sometimes people ask me if I really think lobbying is worth it because of how complicated and partisan politics can be. I’ll admit, it can be discouraging. But those in office really do pay attention and listen to people who take time out of their lives to come and discuss issues with them. There’s so much misinformation out there about eating disorders that we need people who have had real-world experience with them to come and educate lawmakers. Putting a face and a name to a real story goes a lot farther than any statistics, no matter how shocking or upsetting they might be.
Currently Reading: The Body Project by Joan Jacobs Brumberg
Currently Listening: On The Impossible Past by The Menzingers
We don’t always reach our goals. Sometimes that’s because they weren’t realistic to begin with (I swear some day I’m going to keep my eyes open while sneezing) and sometimes it’s because things just didn’t work out.
Following my successful half marathon last November, I planned on running the spectacle that is Richmond’s Monument 10k. If you’re from RVA, you know the race well whether you run it or not, because if you aren’t participating in it, the 10k probably ruins any and every attempt to navigate the city until well into the afternoon. Continue reading →
So, it’s been awhile since I posted. After the non-stop posts of February, I took a hiatus which ended up being a little longer than I planned. Thanks for your patience!
the past week I was riding along on tour with my friend’s band. I got the whole week off work and we had dates in DC, Philadelphia, and New York City. A number of unexpected problems the day before we left almost prevented us from even leaving town, but we were finally on the road Sunday afternoon and made it in time for the first show. Everything was going fine until the van broke down about 20 miles into Maryland. After a couple hours standing in the heat on an exit ramp and a couple more at a mechanic, there wasn’t any other choice but to try to get back to Richmond. They ended up renting a van to make it to the rest of their tour dates, but with all of the instruments there wasn’t room for non-essential people like myself.
Talk about a buzz kill. I had the whole week off work and didn’t really feel like going in, but I didn’t want to waste vacation time either. I ended up taking a day road tripping to visit a friend, and spent a lot of time with another friend who’s moving cross-country really soon, so it wasn’t a total waste.
Way back in 2004, I made a big decision. I got out of class one night and drove from the city back to my parents’ house with the intention of telling them I had an eating disorder. It was rather spontaneous, although it had been in the back of my mind for months. Having had inconsistent luck with friends when seeking support, I wanted to try and avoid those same pitfalls when speaking with my family.
I had found an article on a website that seemed perfect – it was something I wished I could make everyone read before they tried to talk about eating disorders. I printed it out and stuck it in my backpack, where it stayed for weeks, just in case I needed it. When I finally got home, I handed the print-out to my mother and asked her to read it and to not say anything until she had.
Building was evacuated yesterday due to a burst pipe. Back at work, but the network is down. So much for getting a lot done before I leave! 7 hours ago
RT @GoodMenProject: Matt Wetsel knows being a man doesn’t make you immune to eating disorders or society’s obsession with being thin. http… 9 hours ago
A week fro tomorrow I leave for Brazil! I'm going to try and use the internet as little as possible while traveling. 1 day ago
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.
