Who My Daughters Will Become: Reflections on Lobby Day, Advocacy, and Motherhood

Liz and her daughter Genevieve 

by Liz Neaton

Though I had spent several years working in politics in Washington, D.C., the first day I walked into the office of Representative Keith Ellison (D-Minn) for The Eating Disorder Coalition’s (EDC) Lobby Day, I felt like I truly had the ability to make a difference.

I started participating in Lobby Day in 2009. At that time, I never knew just how much it would change me. That year, I heard compelling stories of both recovery and loss with eating disorders.

Loss… that resonated with me.

I had never met anyone who had lost someone to an eating disorder. Here I was, just starting out in my own journey of recovery from the monsters of Anorexia Nervosa and Bulimia Nervosa that had plagued me for the past fourteen years. This was exactly what I needed to hear and it was exactly the moment I needed to hear it.

That first Lobby Day renewed my dedication to recovery. I didn’t want to be another name that was lost to an eating disorder. I didn’t want my parents standing at the podium during a congressional briefing telling my story with tear-filled eyes.

After that year, Lobby Day was like a magnet that sucked me in. Each time, I heard compelling stories of individual trials and tribulations with one common theme: eating disorders lack proper funding, education and access to treatment. A fire was lit underneath me at Lobby Day. I started speaking about my own journey to recovery at high schools, colleges and civic groups. I started contacting my legislative officials on at the local, state and federal level to inform them of the lack of proper funding, education and treatment of eating disorders.

Then, in 2011, I had a daughter of my own – Genevieve. As a single mother, I knew that I needed a safety net if anything should ever happen to me. So, I attempted to get life insurance. I was denied seven times. I’ve kept every denial letter and they all say the same thing: “denial based on history of depression, anxiety and an eating disorder.” Even though I was in a strong recovery program, my past eating disorder was following me. Now it was not just affecting me; it was affecting my daughter. When my daughter was six months old, I brought her with me to Lobby Day. I thought that I should start her advocacy career young. To this day l believe she is the youngest to advocate for the Federal Response to Eliminate Eating Disorders (FREED) Act and eating disorder legislation with the EDC.

Since 2011, I’ve had another daughter. That’s why this upcoming Lobby Day and the March Against Eating Disorders are both so important. 

When I look at my daughters, I see their beauty and potential.

I think about who they will become.

I encourage them and remind them that they can do anything.

Most importantly, I tell them they are beautiful every day. I write it on the mirror so it is the first thing they see in the morning. The last thing I want is for my daughters to endure the struggle I had endured for fourteen years. I want them to love their bodies and realize how perfectly created they are. I don’t have a crystal ball and I can’t say for sure that one of my daughters won’t develop an eating disorder. I can’t say for sure they will love their bodies. In fact, the statistics are against me. But I can show them through my tireless advocacy and, most importantly, by my example that their beauty and worth does not come from anything outside of themselves. Their beauty is from the simple fact that they are alive. They are present and they are able to live their lives. I will continue to come to Lobby Days until we never have to hear the words “eating disorder.” Until no more lives are lost to this terrible disease. Until proper treatment, funding and education are implemented.

I hope you’ll join me in September!

The EDC's youngest advocate joins EDC staff
in the House of Representatives.

A Dad Shares About Lobby Day

August 4, 2014
Washington, DC

Artie Fox is a Board Member of +Alliance For Eating Disorder, an +Eating Disorders Coalition advocate and perhaps most importantly, he's a dad.       Artie graciously agreed to share his thoughts about Lobby Day in this guest blog.  Thank you, Artie --your advocacy means the world to us.

A Dad Shares About Lobby Day:

My daughter has struggled with an Eating Disorder for nine years. After going through the misery of suffering and meeting other families going through the same agony, I wanted to make a difference.

I joined the Board of The Alliance for Eating Disorders in Florida, in January, 2013. At one of my first meetings, I was informed about Lobby Day in Washington, D.C.

I attended my first Lobby Day in April 2013 and found it to be an incredible experience. We, as a group, do make a difference. We meet with various congressional  leaders, discussing many issues which include the FREED Act, as well as photo shopping and how it effects families and individuals with Eating Disorders.  A big part of Lobby day is the opportunity to meet with and socialize with others from around the country. Sharing each others experiences and ideas makes Lobby day extra special for me.

My hope is that every state is represented at EDC National Lobby Day and we do effect changes with the way Eating Disorders are perceived and treated, and eliminate the stigma attached to them.

What's Lobby Day? -- Reflections From a First-Time Advocate

 

 “Wear comfortable shoes.”

In April of 2014, I showed up for my first Lobby Day experience with the Eating Disorder Coalition excited, but not knowing quite what to expect.  Sure, the Coalition had sent us first-timers a precursory email saying, "Here's what to expect at Lobby Day…make sure you wear comfortable shoes!" but until you're smack in the midst of Lobby Day and you start realizing that the phrase “next building” means something very different on the vastness of Capitol Hill, you don’t appreciate what amazing advice that is. 

The last time I was in Washington, DC was during high school when I attended a summer debate camp.  I know.  I was super cool.  While most boys growing up a few blocks from Wrigley Field in Chicago might have dreams of playing baseball, my dreams were about reading memos, writing policy briefs and wearing power suits.  So I was definitely predisposed to at least finding lobby day interesting.  (Also I had just finished watching both seasons of House of Cards, so was having delusions of political grandeur that led me to determine I was not above a little blackmail or something if it came down to it because, you know, that’s how much I care.)

I’ve had the humbling privilege of working with people suffering from eating disorders for most of my career, including developing programs and providing education to families, professionals, and the community at large.  I’m very familiar with the frustration of trying to convey the understanding of eating disorders as disorders of pain, loneliness and shame, which we know they are, and not disorders of vanity or self-obsession, which we know they are not.  Even though I know there are a myriad of very complicated factors responsible for the development of eating disorders, I’ve also seen the very real damage to self-esteem that can occur via societally sanctioned messages about weight and size and the way that these messages can be propagated as well as created by the media.  These messages may not cause eating disorders per se, but they don’t help and they are harmful in other very real ways.  So I was eager to learn about the proposed bill and to experience the process of how lobbying works.

The training day started with meeting my cohort of fellow activists.  I cannot convey how moving and humbling it was to hear everyone’s stories and their reasons for being there.  From those who have lost someone close to them to this terrible illness, those who have themselves suffered, those who were there because they were passionate about educating others about the issues, to those of us who work with people suffering from eating disorders, it was evident how deeply committed everyone was.  Everyone understood the seriousness and impact of eating disorders, but more striking to me was that there was not a sense of hopelessness despite how difficult eating disorders can be to experience and to treat.  Everyone was there to DO something, not by using position or access or money, but by the profound and simple virtue of being a constituent and a citizen and taking the time to show up and “make the ask.”

It was this last piece that was a surprise and a revelation to me, namely the reminder that we have the responsibility and the power to use our voices, as individuals and as a group, to let our senators and representatives know the issues about which we care, and to demonstrate that care not by threats, invectives or game-playing, but rather by embodying this care by speaking with integrity and passion.  Even if there is a member who might not agree with you or who might not be willing to join you by supporting a particular measure, I have to believe that simply showing up and representing the millions of people affected by eating disorders made a difference.  Maybe our efforts help a staffer open her or his eyes to the impact of eating disorders, or someone who has known a friend or family member who struggled who appreciates that someone else cares as much as they do, or even someone who is her- or him-self struggling and hasn’t been able to acknowledge it.  Having people who have experienced it and their families, friends, and professionals come talk to them about the importance of these issues can make a sea change in others’ attitudes and understanding about eating disorders.     

As someone who often feels like I am spending most of my time vacillating between preaching to the choir or to the proverbial brick wall, I found myself leaving my first Lobby Day with a sense of renewed hope and a reminder of why we all do what we do. And I left reminded that when you’re trying to change a lot of people’s minds by knocking on a lot of people’s doors, you have got to be patient.  I was reminded that one voice matters, as does one willing ear.  And perhaps most importantly, I was reminded that the efforts of a few impassioned people can have a disproportionate impact, which is why I’m so grateful to be able to join the Eating Disorder Coalition again at their fall Lobby Day.  I’ll be the one wearing super comfortable shoes. 

Norman H. Kim, Ph.D.

National Director

Reasons Eating Disorder Center

Great Letter from Advocate

Hi everyone --below is a letter from EDC advocate Rebekkah, to her Representative (Member of Congress in the House). Please take a look at her letter to see an example of how to personalize the Eating Disorders Coalition's "sample letter". We're looking forward to receiving many more cc'd letters in our inbox. We need millions more to write in if we want to pass the FREED Act. 
Go to: http://www.eatingdisorderscoalition.org/letter-writing-campaign.htm
for information on how you can write a letter, too! ~ Thank you, the EDC


____________________________________________________________________

Dear Congressman Heck,

As a constituent of your district who has personally suffered from the living hell of an eating disorder, I am writing today to ask you to cosponsor the Federal Response to Eliminate Eating Disorders Act, (the FREED Act, H.R. 1448). The FREED Act is the first comprehensive bill in the history of Congress to address eating disorders. The FREED Act focuses on research, treatment, education and prevention of eating disorders and
serves as a beacon of hope for the millions of people in our country  currently suffering from binge eating disorder, anorexia, bulimia, and eating disorder not otherwise specified (EDNOS).

Estimates suggest that more than 11 million Americans suffer from eating disorders.  I am one of them.  I am one of those girls who lost herself, and almost her life.  More than once, I ended up in the hospital from
electrolyte imbalances and blood work that told the ER doctors that my  heart shouldn’t be beating.  More than once, I prayed and hoped that my heart would, in fact, stop beating.  And without recovery, without the
extensive treatment I had, those prayers would have been answered. 

I can write to you today because of the treatment I received.  In a month and a half I will be graduating law school, because of the treatment I  received.  Everyday I enjoy friendships and gratitude, because of the
treatment I received.  I am alive today because of the treatment I received.

Eating disorders affect every single system of the body and are associated  with serious medical complications including cardiac arrhythmia, cognitive  impairment, osteoporosis, infertility, heart failure and death. In fact,
left untreated anorexia nervosa has the highest death rate of all mental disorders, upwards of 20%. However, when a person suffering from anorexia  receives proper treatment, the death rate falls to between 2-3%.

Research demonstrates that eating disorders CAN be successfully overcome when early detection and adequate and appropriate treatment take place.  And I write to you as verification of that fact!
Unfortunately, at this point in time, eating disorders are all too often  undiagnosed or completely misdiagnosed by health professionals, and access to treatment is limited. Less than 1/2 of all people with eating disorders
receive the treatment they both need and deserve. The FREED Act will save lives by providing for better access to proper  treatment, research dollars to understand the etiology and effective  treatment of eating disorders, grant programs to ensure more medical health  professionals and school personnel be trained on eating disorders prevention and treatment, as well as PSA's to broaden awareness of eating disorders.

Currently the FREED Act has bipartisan support. I ask that you sign on today as a cosponsor of the FREED Act (HR 1448), as a cosponsor of hope, as this bill has the ability to save thousands of lives.  I have vowed to never be an eating disorder death statistic: please help ensure that same  promise, for the thousands of others who are suffering!

I look forward to hearing from you soon.

Graciously yours,   Rebekkah Beth Bodoff


picture courtesy of: photobucket.com/