Category Archives: Activism

Truth in Advertising – Spring 2014 with the Eating Disorders Coalition

We’ve known for years that consumption of media that pushes thin ideals makes people feel worse about themselves, which in turn can lead to or reinforce dangerous disordered eating behaviors. That’s not just a bunch of body image activists talking – in 2011, the American Medical Association (AMA) did it’s own extensive research on the subject. The AMA concluded that “photoshopped” ads which portray unrealistic human bodies have such a detrimental effect on body image and self esteem that it became the organization’s official opinion to strongly discourage the practice. You can read about the AMA’s 2011 findings here on the AMA’s official site, the Huffington Post, ABC News, and EatingDisorder.org.

Briefing Kmac

Kathleen MacDonald of the Eating Disorders Coalition discussing computer-altered advertisements. Photo by Jim Knapp.

Unfortunately, the AMA doesn’t exactly have any authority to enforce that policy on the beauty and diet industry. However, Congress does, and with the strong precedent established by the American Medical Association, that’s exactly what we’re hoping to do.

On April 3, 2014, the Eating Disorders Coalition took to Capitol Hill for it’s 25th lobby day (wow!). I’m happy to say I’ve been there for approximately half of them, having attended twice a year since 2007. In addition to supporting the FREED Act, we’re terribly excited to be advocating for a new Bill that has been introduced with support out the door from both Republican and Democrat lawmakers. In late March, Representatives Ileana Ros-Lehtinen (R-FL), Lois Capps (D-CA), and Ted Deutch (D-FL) introduced the Truth in Advertising Act of 2014 (read the full bill text here). The Eating Disorders Coalition also put out a press release on their blog.

Rep. Ted Duetch and EDC Board President Johanna Kandel

Rep. Ted Duetch and EDC Board President Johanna Kandel. Photo by Jim Knapp.

This new Bill would ask the Federal Trade Commission (FTC), which already regulates false advertising as a means of consumer protection, to further study the effects of computer-altered ads involving the human form. A pharmaceutical company can’t put out a new drug saying it will do something that it indeed doesn’t do – that’s a deceptive advertising practice. That’s why all those really up-beat drug commercials with smiling people in perfect suburban neighborhoods have fine print at the bottom informing you they’re actors and that results may vary.  Essentially, if a diet or beauty product puts a model in their advertisement, but then photoshops the heck out of the image so much that the model doesn’t even recognize himself or herself, that’s false advertising, too. They can’t truly say that someone who used their product achieved those results, because they clearly didn’t.

What about Free Speech? Yeah, that was my first question, too. Obviously, artistic expression is a protected form of free speech. The Bill would not effect magazine covers or editorial content – only advertisements meant to sell products. The FTC already exercises that power over advertisements as a means of consumer protection, it’s just usually an authority used on literal words or statements. Given the strong empirical link between computer-altered media and negative body image, low self esteem, and disordered eating behaviors, it’s an easy argument to make that this is a matter of public health. The authors of the Bill have been very careful and clear in their wording of it, and there’s no doubt in my mind that Congresswoman Ros-Lehtinen would be championing the effort is there was any risk of it infringing on free speech. Not to mention, it’s less than three pages long – you can read the whole thing faster than you can read this blog post!

As leader of the Virginia Team, my group managed to meet with seven different offices the day we were there. We had very positive meetings in every office, and an especially good meeting with Congressman Robert Hurt. Meetings usually occur with Congressional staff, but Representative Hurt met with us personally and took a special interest in the cause.

Congressman Hurt

Virginia Team with Congressman Robert Hurt

 

By the way… this issue isn’t going away any time soon. TIME Magazine did an amazing write-up about the efforts on April 3 (please share and RT!):

Search #TruthInAds on Twitter to follow the conversation online, and use that hashtag when sharing information about the efforts!

Care about this issue? Can’t attend Lobby Day but still want to make a difference? Good news, you can! Remember, the Truth in Advertising Act of 2014 has already been determined to be zero-cost. Price of new legislation is usually one of the biggest barriers to getting new laws passed, in addition to finding ways of legislating that both parties can agree on. As previously stated, this Bill is already bipartisan!

If you live in the United States, asking your Representative in Congress to support a Bill is really easy. First, go here:

http://www.house.gov/representatives/find/

Find out who your rep is, and then from there you can locate their office contact info from their personal website. You can call or a write letter (or both!) and ask them to check out HR4341. If you have a personal connection or experience with eating disorders, let them know why this is so important to you. And of course, you can consider coming to DC in the Fall!

The next Lobby Day with the Eating Disorders Coalition is September 30-October 1. Mark your calendars now!

Finally, we bid farewell to our Policy Director, Jeanine Cogan. After 14 years she is ready to move on to other things, but the EDC wouldn’t exist without her amazing efforts and commitment to the cause. You can read her farewell statement here on the EDC blog.

Alright, here are some pictures from Lobby Day and the reception the night before. Please ask your rep to support Truth in Advertising, share this post with everyone, and please consider coming to advocate with us in the Fall!

Group Shot

Group shot! VA Team didn’t make this picture, unfortunately, since we had an early meeting. Photo by Jimm Knapp.

Reception 1

Some very attractive advocates having a very important conversation. Photo by Jim Knapp.

Reception 2

Kathleen MacDonald and EDC Board Member Jaye Azoff. Photo by Jim Knapp.

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Another shot of VA team at the end of the day after a few others had to leave. Seriously, everyone on the team did an amazing job letting me drag them around Capitol Hill.

Capitol Night

We had the good fortune of some perfect weather. Photo by Jim Knapp.

Seth 1

This is Seth Matlins. If it wasn’t for him, the Truth in Advertising Bill wouldn’t exist. Special thanks to him for his passion, advocacy, and commitment to this issue. Photo by Jim Knapp.

 

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Saw this a block away from the Senate buildings. It’s quite fitting, no?

Thanks for reading. Please contact your representatives, and maybe I’ll see you in DC in October?

 

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It’s Already October??

Currently Listening: Nine Inch Nails – Hesitation Marks
Currently Reading: There is No God & He Is Always with You by Brad Warner

Busy, busy, busy! I feel like it’s still May, but apparently it’s already October? I haven’t had much time to do a post, so I thought I’d let everyone know what I’ve been up to and some of the amazing people I’ve had the pleasure of connecting with lately.

In September I spent a long weekend in New York City, and in addition to providing a much needed change of scenery, it afforded me the opportunity to finally meet up with some wonderful friends I’ve been in touch with and/or collaborated with online.

NYC 9-2013

From left to right: Caroline Rothstein, Claire Mysko, my friend Kenny, me, Jenn Friedman, & Kendra Sebelius

If you don’t already know who they are, you should check out their work!

Caroline Rothstein and I had been meaning to try and meet up for awhile now. She’s one of the strongest and most unique voices in eating disorder advocacy I know, turning her own experience with recovery and body acceptance into some powerful work. From writing to blogging to slam poetry, Caroline is a force to be reckoned with. Check out her poem, “Fat” and see for yourself:

Claire Mysko and I were on a segment together on The Stream earlier this year. Claire has made quite a name for herself, getting international attention for her work on body image and body acceptance. An accomplished author, speaker, and consultant, she has served as the director of the American Anorexia Bulimia Association and has held senior positions at SmartGirl and Girls Incorporated. Check out http://clairemysko.com/ to learn more about her work, and definitely check out her recent (and excellent) editorial on The Frisky, The Wolf in the Cereal Bowl.

Jenn Friedman is a musician and eating disorder recovery advocate. She’s been busy working to combine those two passions in a project called “Eating Disorders On the Wire: Music and Metaphor as Pathways to Recovery,” which is supposed to come out really soon!

Kendra Sebelius runs Voice in Recovery, where she focuses on recovery not just from eating disorders, but from substance abuse and addiction as well. Kendra’s own efforts to get sober and recover inform her advocacy work with eating disorders, body image struggles, mental health issues, substance abuse and self harm. She’s also a fellow Junior Board member with the Eating Disorders Coalition.

By the way, we were at TeaNY, one of my favorite NYC spots. All their food is wonderful and the cheesecake is almost worth the trip alone.

Stay tuned for updates from Lobby Day last month, and the NEDA conference!

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Should NEDIC Reconsider Their Ad Campaign?

Update:
NEDIC put out a response for which I’m appreciative (see here). Perhaps my rhetoric was a little over-the-top, but I do feel strongly about these things and believe they must be treated with the utmost care (see the comments section for further discussion). The nature of the internet can sometimes blow things out of proportion, and I hope that hasn’t happened here. To borrow a phrase from one commenter, I’d never want to ‘silence an ally’ and NEDIC does some extremely important work!

Original Post:
The following photo shows an ad that the National Eating Disorder Information Center is currently running on subways to attempt to get people talking about eating disorders and make them aware of local resources. But am I the only one who has a problem with it?

NEDIC

In response to some initial critique, NEDIC (at least, whoever runs NEDIC’s Facebook page) issued the following replies:

“It does say Hunger is my bff- it is meant to shock, leave an impression and encourage dialogue. Thank you for the feedback and engaging with us.”

…Is the image controversial? Polarizing even? Yes, but as long as it makes people think about it, and talk about it, we feel we have made progress in making more people aware of available resources and support- our end goal. This is our first such campaign and we will be doing market research to gauge reaction on-the-street, and how the campaign is being perceived by the general public. All information will be used to deliver more effective campaigns in the future…”

Where to start?

They actually stated that this is their first such campaign and are doing market research to gauge reactions. Did no one think that perhaps that feedback could have been garnered online via activist communities or opinion polls? In other words, they’re beta-testing this idea to the general populous.

Worse, I have a problem with that whole “as long as it makes people think about it… we feel we have made progress.”

See…

In some situations, I agree, but this is not a “no press is bad press” type situation. When dealing with something deadly like an eating disorder, an ad that (not-so-clearly) aims to satirize the behaviors of disordered eating comes off as trivializing the issue for people who are suffering from EDs and confusing passerby who don’t get it. When going for “on-the-street” reactions you have a responsibility to be concerned about the affects of your message on a general population, and this doesn’t meet that criteria.

You know what’s even more attention-getting? Statistics like the fact that eating disorders have the highest mortality rate of any mental health disorder, upwards of 20% of anorexics WILL DIE as a direct result of their eating disorder.

If you were an advocacy organization that campaigned against self-harm or suicide, would you put a similar “controversial and polarizing” message up to turn heads, like “Cutting is my BFF”? I’d certainly hope not.

This campaign is as vapid and harmful as those Urban Outfitters shirts that say “Eat Less.” There is honestly no difference, and whoever thought this up should reconsider what they put out into the world and whether or not this actually helps more people than it harms.

Eating disorders are deadly disorders, and this ad makes a mockery of the families that I have met doing lobby work who have lost loved ones to these terrible illnesses.

To be clear, I love 99% of the images on their page and it looks like they generally do good and important work. As an outspoken and passionate eating disorder activist, I love to see other people and ‘orgs trying to reach out to others. But this particular campaign doesn’t cut it, and hiding behind statements like “Yes, it’s shocking, let’s talk about that” doesn’t cut it, either.

Seriously. Do your “market research” internally or with the population you hope to reach out to. I can think of many forums and groups that would be happy to assist in providing feedback before you pay money to put up harmful ads on subways.

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In Loving Memory of Matt Ryd, Musician & Eating Disorder Activist

Last year at the end of Eating Disorder Awareness Week, I stumbled on another guy named Matt, a musician from Chicago who also suffered from an eating disorder. He had made a really touching video for ED Awareness Week, and all proceeds from his music sales for the entire week were being donated to the National Eating Disorders Association.

MattRyd

I had a brief correspondence with him over email, mainly to tell him how much I loved the video he had made, and to ask him if he would ever consider coming to DC to do advocacy work with me and the Eating Disorders Coalition. I’m often one of the only guys there, but I know there are others. I’ve met them, we’ve networked online, and we’ve all seen the limited statistics that are available that still unequivocally demonstrate that an eating disorder is a serious, life-threatening illness, regardless of the sex or gender of the person suffering from it. We need more male representation on Capitol Hill to reflect the actual population affected, and I was excited to be in touch with such a passionate and caring guy like him.

Matt had told me he wasn’t sure he could afford traveling all the way to DC, but would like to in the future if possible. As I’ve been prepping for the Fall 2013 day in DC, he was on my short list of people to email and check in with. Instead, this evening I found that his family left the following comment on the post from last year:

Matt Ryd has passed away.

From his parents on his Facebook Page:

Message from Matt’s Parents to all Matt’s wonderful friends and supporters:

It is with very heavy hearts that we must tell you that Matt lost his battle with the anxiety, depression and eating disorder that had consumed him for so long and ended his physical life here on earth on Sunday, August 4th. While Matt fought vigorously for many years, his illnesses had grown more and more debilitating over the past 18 months or so, and though he tried hard not to show it, his daily suffering increased significantly and was ultimately more than he could bear. Our hearts are broken, but we take comfort in the knowledge that he has finally been “Healed” and will suffer no more.

Matt was an amazing young man with many talents, but most importantly he had a sensitive spirit and heart of gold and touched people’s lives all around him. In true Matt Ryd fashion, he left an open message for his friends, fans and others who supported his dream of being a musician that he asked us to share with all of you. His message reads as follows:

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“To all the people who have taken time to listen to my music and support my dream, even though it stops here before I become a big shot and get to prove that I won’t lose touch with my frans: Thank you. Thank you for the joy that you brought into my life. Because there have been absolutely no times that I have been happier than when I’ve been onstage, than when I’ve watched comments roll in on YouTube videos, or when I’ve had simple Facebook conversations with people halfway around the world. You are all wonderful and amazing and I thank you so so much for your time and your attention. I’m just happy that I’ve been able to make any impact in your lives. I truly regret that the music has to stop along with me.”

********************************************************************
Matt lived to write and play music and was always overwhelmed and humbled by the tremendous support that he received from so many of you. Thank you to all of you for being a part of his life and providing him with such unbridled joy in the midst of all of his struggles. He will be missed greatly by us all, but we think his passion for music will continue on – in the words and lyrics of the other wonderfully talented singer/songwriters that play nightly across the Chicago landscape and beyond – and we know that is what he would want.

There will be a memorial service in a few weeks to celebrate Matt’s life and the music he loved so dearly in a way that he would have wanted. More information will be posted as it is determined. Matt also very humbly requested that any remembrances be made to either ANAD (www.anad.org) or NEDA (www.neda.org) which are two eating disorder support organizations that were important part of Matt’s life for many years.

Thank you again for the part that each of you played in Matt’s life. We will always cherish the happy moments and memories that being a musician provided for Matt over the years.

Steve and Joani Ryd

Right now I can’t even read through the entire message because I’m crying too hard. I want to watch the video again that he made last year, but the moment the music comes on I know I can’t.

On March 5, 2013, he shared the following message on his Facebook page:

Hey everyone,

As National Eating Disorder Awareness Week has drawn to its close, and having finished an overwhelmingly successful fundraiser (for which I owe you all of the credit), I feel like the time is right to make an announcement.

I’m going back into residential treatment for my own eating disorder for a while. Actually, I’ve been in residential for the past week, but didn’t want to distract from the fundraiser until it was complete.

Some of you are probably thinking: “Wait a second… wasn’t he *just* in residential treatment?” Well… yes and no. Yes, I left residential treatment about 5 months ago when my insurance ran out. 5 months is a relatively short amount of time, but can also be an eternity when you’re left with unresolved issues. In my case, as the eating disorder symptoms stopped being a problem, that led to intense anxiety. That anxiety, in turn, led to a pretty bad bout of depression. And that depression led me to turn back to my eating disorder.

In technical terms, I relapsed. It’s not uncommon. Statistics vary, but it’s generally believed that somewhere around 50% of patients tend to relapse in their first year after spending time at an inpatient/residential facility. Unfortunately, though I tried very hard not to fall under this statistic, as I’ve said before: eating disorders are sneaky little bastards, and they can come creeping in and take over your life before you even know it is happening.

I have no clue how long this stay will be. I do know that, this time, I’m staying here until I’ve worked through the underlying issues that lead me to turn to my disorder. Last time, I essentially cured the symptoms without fixing the disease. Or, to get all metaphorical on you, I tore up the weeds in the garden without managing to dig up the roots, and, as is expected, the weeds grew back.

In the meantime, I’ll obviously be taking a hiatus from music and production while in the recovery process. But I’ll also be taking a sabbatical from social networks (Facebook, Twitter, my blog… and I’ll try really really hard not to Instagram the pictures my parents send me of my cat). I’ll do my best to respond to personal messages on any of those platforms, but I won’t be responding to or making any wall posts, @ replies, or anything like that.

But I’m not dropping off the face of the earth. If you’d like to reach me for any reason, I’ll still be checking and doing my best to respond to emails at matt@mattryd.com. If you have my personal cell phone number, I’ll be doing my best to respond to any texts that I get, and if you don’t have my personal cell, you can text my work phone at (773) 980-6793. I do have to emphasize that I will *try* (and will try very very hard) to respond to everything. But, just to put things in perspective, I have *very* little free time, so I apologize in advance if some communication falls through the cracks. I promise, I will read everything, and that emails and texts from the outside world are greatly appreciated, as I’m a little bit sequestered at the moment.

Let me just say thank you to you all for your support and for sticking by me during my struggles. I promise that, when the time is right and when I am healthy, I will be back, and will be better than ever. I’ll be putting out albums left and right, producing like crazy, hanging out with as many of you as possible… and best of all, I’ll be doing it without an eating disorder. If you thought that I was able to do cool stuff before, just wait until you see me when I’m healthy. I plan to be a force to be reckoned with.

I love you all dearly, and will miss you while I’m gone, but I know that this is for the best. And when it’s all done, you’ll have an even better Matt than you’ve ever had before. And hopefully that’s something for us all to look forward to.

Your friend,
Matt

Even though we never met, I felt a connection to Matt. I think it was his sincerity and honesty, even while he was struggling. I could just tell that his candidness and hopefulness were going to give others hope, too, and maybe the impetus to seek their own recovery and support.

So if you’re reading this and you’re struggling, or you know someone who is: it’s time to do something about it. Eating disorders are serious, deadly illnesses, and you (and me, and Matt, and everyone) deserve to be healthy and happy.

Here’s the video that Matt made again. Please watch it, and share this with anyone who needs to hear it.

I wish I could have met you. Rest in peace, Matt.

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Eating Disorders: Not Just a Woman Thing – Huffington Post Live 7/31/13

The only way we’re going to change the landscape of mental health and eating disorders is to keep talking about it, which is why I’m so thrilled that The Huffington Post covers this topic fairly regularly. I joined their live segment on 7/31 along with Dr. Ted Weltzin, and eating disorder survivors Bryan Piperno and Brian Cuban (who’s first book is about to come out – congrats Brian!)

Here’s the full segment:

I took the opportunity to talk about the most important avenues to create change  - policy reform. Men aren’t always included in eating disorder studies for a variety of reasons. Men are less likely to seek help, to be diagnosed with an eating disorder, and most inpatient facilities don’t accept male patients. All of these factors make it harder to actually identify and locate patients to participate in research. That, and most large studies are funded through public money, and currently there are very little research dollars available for eating disorder research.

That’s one of the reasons I’ve been working and volunteering with the Eating Disorders Coalition for the past 7 years. The EDC advocates on Capitol Hill for mental health policy reform, and we always need more people to come and share their stories. If you’ve been  personally impacted by an eating disorder, whether suffering from one personally, watching a loved one struggle, or in your professional life, we want you to join us! Check out http://www.eatingdisorderscoalition.org for more info.

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Being an Immigrant and Developing an Eating Disorder: Is this the American Dream?

I’m excited for the opportunity to share my friend Sarah’s testimony from last year about her experience with eating disorders. She was a guest of the Eating Disorders Coalition for the Spring 2012 Lobby Day, where she delivered the following speech to advocate for the passing of the Federal Response to the Elimination of Eating Disorders (FREED) Act.

Sarah emigrated to the United States from Hong Kong as a teenager, and shortly afterward developed an eating disorder that would last over a decade. Her story is a testament to how serious eating disorders are, their impact on diverse populations, and the need for both legislative and cultural reform to address access to mental health services and destigmatize mental illness.

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Being an Immigrant and Developing an Eating Disorder: Is this the American Dream?
Sarah Yeung
April 24, 2012
Eating Disorders Coalition Congressional Briefing, Capitol Hill

It is a privilege to be here today. I am grateful to be alive, healthy, and in recovery.

I am standing before you today to raise awareness that eating disorders are serious diseases that affect not only a small number of young, white girls but 14 million of Americans of different gender, race, age, and sizes. I am here to show that, with the proper treatment, people can and do recover from eating disorders. And I am here to ask you to support the Federal Response to Eliminate Eating Disorder Act.

My eating disorder symptoms started when I was 14, a year after my family immigrated to the U.S. from Hong Kong. It was a very difficult transition to American middle school. I felt lost, lonely, and out of control. In addition to the usual teenage turmoil, everything I knew became a conflict as my two cultures clashed. I wasn’t sure what I was supposed to do, how I felt, and ultimately who I was. I spoke with an accent. I looked different. I didn’t belong. I didn’t fit in. My sense of self was in jeopardy and I became more and more depressed.

Similar to many first generation immigrants, I felt great pressure to succeed, to make the sacrifices my parents made to move to the U.S. worthwhile, and to live the “American dream.” In addition to being biologically predisposed to eating disorders and a history of trauma, the high expectation to achieve culturally and as an immigrant further increased the risk. I felt that I had to be the best at whatever I did. Of course, the trouble with such a standard is that nothing was ever going to be good enough.

There wasn’t any single incident that suddenly caused the eating disorder. But I do remember specifically the terror and panic I felt when I received a “scorecard” from gym class with my BMI(Body Mass Index) and fat percentage. The scorecard showed that not only was I not the best – I was actually very bad! There was no explanation or follow up.

We just got the scorecard and were told to exercise more and eat healthy. As I tried to cope with all the changes and challenges, I became more obsessed with controlling my physical appearance. The non‐stop drive to be better subconsciously evolved to a relentless focus to become thinner.

The severity of my eating disorder fluctuated throughout the next 14 years. It would subside for months or even years, and then peak again, particularly during transitions. For a long time, I got by under the radar. Undiagnosed and untreated. At times, I tried to evade detection and treatment, which is not surprising since denial is a prominent feature of eating disorders, making anorexia the mental illness with the highest mortality rate.

The intense stigma I observed with mental illness was a strong barrier to get the help I needed. Similar to many families, especially Asian families, mental illness was not a topic discussed. Even though my family has a history of mental illness, it was rarely mentioned. Nobody talked about it. I observed reactions of frustration, pity, anger, and dismissal. I felt that there was an implied consensus that mental illnesses were not “real diseases.” If your mind was strong enough and if you worked hard enough, you would “get over it.” It is a sign of weakness to have a mental disorder and it brings shame to your family.

And I believed much of it.

I didn’t want to be stigmatized and I didn’t want to be perceived as weak. I just wanted to be “ok” and hoped that my struggles would disappear. I wasn’t asking for help. And, at moments when I thought maybe I needed, I didn’t know how to ask or where to turn for help.

Growing up, nobody guessed I needed help. “Asians don’t get eating disorders, right? They are just smaller. She seems to show some symptoms but she is fine.” As I got older, “How bad can things be for someone with two Ivy League degrees, a nice condo, a fancy car, a promising career, and seemingly good relationships? Nothing is wrong with her. She doesn’t need help.” Feeling isolated and alone, I continued to struggle and started to die physically and mentally. And, dangerously, I didn’t mind.

Some say you need to hit rock bottom before there is drastic change. I suppose it is true in my case. The bottom of near death at 27 led to a four‐and‐a‐half month inpatient treatment, where my journey of recovery began. I was very fortunate to have health benefits that allowed me to stay the full length of time recommended by the treatment team. I received intensive outpatient treatment for 8 months after discharge. I continued weekly appointments with a team of medical doctors, psychiatrists, psychotherapists, nutritionists and attended group therapy for many more months. I still have regular appointments to maintain my recovery now. I truly believe that my recovery is a direct result of all the treatments I received.

Access to treatment is a matter of life or death. I have witnessed hundreds of eating disorder patients denied treatment or had to curtail treatment prematurely due to insurance. Without the treatment they desperately needed, many relapsed within a short time. Some died. Without access to each of the treatments I needed, most likely, I wouldn’t be here today.

With five years in recovery, I now have a life I enjoy. And I enjoy living. I don’t know if I am living the dream my parents had in mind when they moved us to the U.S. I am living a healthy and happy life and have the freedom to do what I believe in – such as standing here today. To me, this is the ultimate “American dream”.

Professionally, I am proud to contribute to a healthcare company that helps improve the health and well‐being of millions of people globally. I am particularly interested in roles that help drive fairness and equity and help people grow and develop. Instead of isolation, I am cultivating and enjoying fulfilling relationships. I have learned to love my body, accept and integrate the diverse pieces of my life, and continue to discover and value my worth. I have learned that I am not alone and there is a supportive community available to help.

Now, it is important for me to help advocate for awareness and increased treatment access to eating disorders and mental illness. I want to help fight the secrecy, shame and stigma that perpetuate myths and deter people, including me, from getting help. I want to help others overcome challenges and traumatic experiences and find their voices and passions. I have learned that there is always hope, even when it doesn’t seem like it, and that recovery is possible.

I am grateful for my recovery and it isn’t meaningful to look back at the “what if’s” in my personal struggle with eating disorders. I am fortunate to receive treatment, but it still robbed 14 precious years from me. It is difficult not to wonder… If there were more education, would people around me – family, friends, teachers, coaches, doctors, dentists…etc. – have been able to detect the symptoms and help me earlier? Would I have been more aware that I actually had a real disease that wouldn’t just go away and seek treatment earlier? With laws that prohibit denial of treatment, would some of my friends not have to die? With more prevention, would I have been identified as at risk and received intervention even before the eating disorders became severe? With more research, would it be possible that there is more cost‐effective treatment or even a cure by now?

While these questions are hypothetical, they do not have to be. With the Federal Response to Eliminate Eating Disorder Act that addresses eating disorder treatment, research, education, and prevention, YOU now have the opportunity to turn the hypothetical questions into reality. YOU have the power and responsibilities to provide treatment to the 14 million Americans living with eating disorders today. And YOU have the ability to change the future.

 n the future – hopefully the near future – eating disorders do not have to debilitate millions who can otherwise contribute productivity to our society and be full participants in their families and communities. Eating disorders do not have to affect millions of additional Americans each year. Eating disorders do not have to kill. And, maybe, eating disorders do not have to exist in America at all.

YOU can make all this happen. And NOW is the time to pass the Federal Response to Eliminate Eating Disorder Act.

Thank you.

To learn more about the FREED Act and what you can do to help get it passed:

  • Keep up with the latest from the Eating Disorders Coalition via the EDC Blog (http://eatingdisorderscoalition.blogspot.com/) and follow on Twitter (http://twitter.com/EDCoalition)
  • Come to Lobby Day! We always need more advocates to come and share how eating disorders have affected their lives in some way to add a face and a voice to the issue. The next Lobby Day is scheduled for September, 2013!
  • Can’t make it to DC? You can still email or write to your Congressional Representatives and let them know you want them to support the FREED Act! Check out this post to find out how.

Thanks again to Sarah for letting me share her testimony. ‘Til next time!

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Interviews with Eating Disorder Advocates – The Kari Adams Show 4/17/13

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:


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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No More Gender Bias – EDC Congressional Briefing, April 2011

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.


You can access the full speech transcript here.

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Eating Disorder Advocacy in Washington, DC – 4/17/13

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.

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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.

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.

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 ending eating disorders & the EDC! (Also, when did my hair get so long??)

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.

Some seriously perfect weather on Captiol Hill.

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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.
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.

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

Team leader brainstorming!

Team leader brainstorming!

 

Myself and other advocates during the reception.

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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Anorexia in Men on the Rise – Huffington Post Live Interview

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.

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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