Why I Lobby (and Why You Should Too!)

Richmond, Virginia

By: Matt Wetsel

One of the Bills that the Eating Disorders Coalition (EDC) supports is the Federal Response to the Elimination of Eating Disorders, or the FREED Act. Sometimes people see that word ‘eliminate’ and ask us – do you really think that’s possible?  Well, here are the facts: We know recovery is possible. We know many of the warning signs for the onset of eating disorders. We have effective treatment models. So, those make you wonder…

Why, then, are eating disorders on the rise?
Why are people dying from them?
Why is it so hard to get help for an eating disorder?

Unfortunately, it’s complicated. Long before someone seeks help, there are a lot of barriers already in place. These often include:

1) Stigma. Although eating disorders are talked about by the general public more now than even just ten years ago, the average person still lacks significant understanding of the complicated nature of eating disorders, and the seriousness of the diseases.  The lack of understanding remains, in part, because eating disorder sufferers often try to keep their disease secret – those suffering from eating disorders go to many lengths to try and hide or cover up their behavior and try to appear ‘normal.’  It also doesn’t help that, many still view eating disorders as an “illogical problem.”  Despite increased discussion and awareness, it is still difficult for people who haven’t ever been close to someone with an eating disorder to understand how such a disorder develops and takes root, because many people still wonder, “Why would you choose to starve yourself? Why would you chose to throw up your food? Why don’t you just stop binging?”  To many, eating disorders don’t make logical sense.  These uninformed ideas and opinions about a disease that is anything but a choice, are reinforced by…

2) The Media/Pop Culture.  Just this past Thursday, going through the check-out lane I was greeted by a celebrity gossip magazine cover devoted to eating disorders (EDs). The cover consisted of a collage of emaciated models and actresses, along with a list of other celebrities covered in the issue, their various EDs, and the promise of lowest weights and caloric intake in the articles contained within. Anyone see the problems here?  The main problem is the myths purported.  First, they were only covering women.  Second, to have an eating disorder, you do not have to look emaciated.  Binge-eaters and compulsive overeaters typically aren’t underweight, and bulimics often seem to maintain (emphasis on “seem to”) what appears to be a healthy weight due to the way the body responds to purging activities. The magazine’s glamorization of emaciated celebrities misrepresented the breadth and variation of those who suffer eating disorders.  If the extreme portrayals exhibited in the magazine stories are all the general public ever sees or hears on eating disorders, then that makes early detection and prevention harder.  For people in a position to support someone with an ED, this media misrepresentation instills a bias before they even approach the subject, and makes it harder for people to take seriously. Speaking of taking it seriously…

3) Treatment Coverage. A recent Glamour article highlighted the fact that most doctor’s do not know how to diagnose eating disorders, including if the patient is underweight, whether slightly or grossly, or exhibiting signs and symptoms of bulimia or binge eating disorder.  Part of the reason why doctors don’t identify eating disorders in their patients is because they are undertrained in medical school, and they rely on pop culture to judge whether or not a patient has an eating disorder.  All too often patients have heard things like:

-“Well, you’re not that underweight, so you’re not anorexic.”

-“Just don’t let your diet get out of control.”

-“Hey –at least you’re not overweight!”

Unfortunately, appearances can be deceiving, and not even doctors are immune to the thin-is-healthy bias. This is further compounded by the lack of research done on eating disorders. To date, there have been no comprehensive, nationally representative studies on eating disorder prevalence. There is endless debate about the ‘cause’ of eating disorders, and almost as much debate about the best way to treat them.

Looking at what we’re up against, it’s pretty easy to feel discouraged. The good news is, there are already members of Congress, the individual advocates and the Member Organizations of the EDC and other organizations working to address these problems.

For starters, the EDC has partnered with Mothers Against Eating Disorders and The Alliance for Eating Disorder Awareness to put on the biggest event in EDC National Lobby Day (Lobby Day) history yet! On September 30, 2014 the Mothers and Other’s March (M.O.M.) Against ED will take place in Washington, DC. The day will conclude with the world premiere of America the Beautiful 3 (ATB3) and the filmmaker himself, Darryl Roberts.  The ATB film series has shed light on the many ways that the beauty industry contributes to the unhealthy relationships that so many people suffer with their body, and we’re thrilled to have him join us!

October 1, 2014 will see the EDC’s 26^th Lobby Day on Capitol Hill. We’re excited to continue advocating and gathering support for the FREED Act.  And, we’ll also be introducing new legislative initiatives around the Body Mass Index (BMI). 

So how can you get involved? For starters, join us for Lobby Day and the M.O.M March! Full details and registration can be found here:

http://www.marchagainsted.com/

Showing up in numbers on Capitol Hill, sharing our voices and collective message with Members of Congress and their really amazing staffers is ultimately the best way for us to advocate together and make change, but… If you can’t make it to DC for Lobby Day and the M.O.M. March but you still want to be a part of history, stay tuned to the EDC’s FB, Twitter and blog for how you can make a difference even if you’re not on the Hill with us that day. 

Whether in DC or supporting from a distance, we hope you’re as excited as we are about the upcoming events and Lobby Day efforts. It’s a chance to make a difference for millions of people and continue to advance a cause we all care so much about. That’s why I’ve been involved for the past seven years, and why I keep coming back. So please, join us however you’re able. See you soon!

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Reflections on EDC Nat'l Lobby Day

Dear friends and supporters of the Eating Disorders Coalition,

EDC Advocates --working to pass the FREED Act!

In some ways EDC National Lobby Day resembles a wedding celebration. Months and months go into preparing for one day of celebration, details are stressed over, excitement builds, and then the day you’ve been planning for is over and your friends depart and go back to their respective ‘every-day’ lives. And like a wedding, when EDC National Lobby Day is over and advocates depart, they leave with a fire in their hearts, forever changed.

National Lobby Day events began Monday with an evening reception at the Stewart Mott House on Capitol Hill. EDC President Lisa Lilenfeld welcomed EDC Advocates and invited them to enjoy food and drink as they mingled and met new advocates, as well as greeted old friends. Midway into the reception, EDC Policy Director, Jeanine Cogan, introduced the EDC’s newest Policy Team member, Al Guida from Guide Consulting. Al invited each EDC advocate to introduce themselves and also share a few words about what brought them to DC to participate in EDC National Lobby Day. The stories shared around the room were each unique, but all connected in the heartfelt dedication as each advocate described their commitment to being part of the movement that will eliminate eating disorders. We celebrated our commitment to be advocates.

April 26, 2012: EDC National Lobby Day  -- one of best yet. The day began with Basic Training where all first time advocates came together early in the morning to learn more about what it means to be a part of EDC Lobby Day, as well as to help ease ‘nerves’ that tend to come with being on the Hill for the first time.  After Basic Training, the newly trained EDC Advocates merged with veteran EDC Advocates and we melded into one large group of impassioned and powerful voices. The message we shared with Members of Congress and their staff was that: Eating Disorders are serious; There is Hope; Congress CAN make a difference! ~

We headed over to the Capitol for a group photo and then went to the Dirksen Senate Office Building for lunch and the EDC Congressional Briefing, “The Faces of Eating Disorders: Will the Real Person with an Eating Disorder Please Stand Up”. The Congressional Briefing educated Members of Congress and their staff about the fact that eating disorders do not discriminate.  They effect people of all ages, races, ethnicities, genders, classes, sexual orientations and even political parties. Speakers were: Rachel DeYoung, a biracial woman who suffered and recovered from her eating disorder; Sarah Yeung, an immigrant from Hong Kong who developed an eating disorder once she moved to the U.S.; Tracy  Smith, a mom whose daughter Reanna died while waiting for access to treatment; and Dr. Ted Weltzin who specializes in working with men and boys who suffer from eating disorders. The stories were each powerful and left an impact. After the briefing 78 individual advocates from 22 different states, headed out to meet with their Members of Congress and staff, delivering the urgent and heartfelt message that: Eating Disorders are serious; There is Hope; Congress can make a difference by passing the Federal Response to Eliminate Eating Disorders Act (FREED Act).

EDC National Lobby Day concluded with a debrief meeting, hosted by FREED Act champion Congresswoman Tammy Baldwin’s staff. At the debrief, EDC Advocates shared stories from the day’s meetings. This was a notable EDC National Lobby Day as one advocate after another shared the news that their Member of Congress agreed to sign on to the FREED Act ! The FREED Act already has three new co-sponsors (with more to come)! We heard stories of Staff Members who attended the EDC’s Congressional Briefing and were moved to tears because of the stories shared. We heard about a Member of Congress who called an EDC advocate who wasn’t able to come to the Hill for lobby day. And we even had Members of Congress tweeting about their meetings with EDC advocates! TOGETHER WE ARE MAKING AN IMPACT!

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EDC Advocate shares her FREED sign

Eventually we had to conclude our day –feet were tired, bellies were hungry, and advocates were in need of rest and reflection. After many hugs, we departed the Hill, ending another EDC National Lobby Day, forever changed. And though we are no longer in person with one another, we remain a collective voice, as afterall we are the Eating Disorders COALITION. As an individual advocate, you are a member of the Coalition and you are now part of a collective voice and movement on the Hill; you are now a part of the movement that will change policy at the Federal level –a daunting task that is only possible because of you. As a member of the Coalition, you now have a way to use your voice in an organized way that will help you fight back against the many insidious ways an eating disorder might have impacted your life. As a member of the Coalition, you are part of a family of advocates who support you, and who are here to help you make a difference in the way eating disorders are addressed in our country. Each of you is a special part of a circle of hope and action, of a meaningful and powerful coalition – and your advocacy need not end simply because EDC National Lobby Day has concluded. ~ We encourage you to stay involved with us: go to the EDC website and sign-up to receive email Action Alerts; friend us on Facebook; send in your picture with your “I stand for the FREED Act because….” signs to kmacdonald@eatingdisorderscoalition.org; ask your friends, family, your treatment team, etc. to participate in our “Phone in for FREED” campaign (details on our Facebook page)  -- There are many ways for you to continue using your energy, your passion and your voice until the next EDC National Lobby Day and we are happy to help you do so! ~  If any of you have blogged about your experiences, please feel free to share those with us by emailing kmacdonald@eatingdisorderscoalition.org ; feel free to post your reflections and your pictures on our Facebook page, etc. We encourage you to stay in touch!

This EDC National Lobby Day has left an indelible impact on our hearts. We are reinvigorated because of each of you who took time off from work and school, who spent your hard earned money, and who each gave of your heart to help make this EDC National Lobby Day one of our best yet.

PS: huge shout-out to all our volunteers who make EDC National Lobby Day possible, including our Team Leaders: Matt Wetsel, Eileen Binkley, Gail Schoenbach, Lisa Lilenfeld, Johanna Kandel, Jillian Lampert, Deb Mellk, Alan Duffy, Carmen Cool, and Lisa Hail; Our “boots on the ground” volunteers Emily Suttle and Rachel DeYoung who hand-delivered EDC Congressional Briefing invitations to every single office of the Senate! And thank you to EDC photographer Jim Knapp for taking pictures and posting them on the EDC Facebook page. (We encourage advocates to go to our Facebook page and tag yourself in pictures--please tag only yourself) https://www.facebook.com/EatingDisordersCoalition Finally, special thanks to the Stewart R. Mott House for hosting our reception http://www.srmfoundation.org/AboutUs.html