Tag Archives: recovery

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!

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!

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Quick Updates

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?

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2012 in Review

The New Year marks almost two years that my blog has been online. 2012 saw a lot of new visitors, and as I did last year, here are some of my favorite posts of 2012!

1) January 13, 2012: Smash Your Scale (And Anything Else Holding You Back!)
One of my favorite posts, and also one of my favorite stories to tell. The avatar for my blog (the smashed scale up in the corner) isn’t some stock photo – it’s actually the scale I smashed back in 2005 behind the alley of my first apartment.
“I can’t really understate how good it felt to smash that evil contraption. It was one of the biggest enablers of the eating disorder, and there was no way I could pretend that I was going to get better and still keep it around.”

2) February 6, 2012: Continue reading

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Public Perception of Eating Disorders – Huffington Post Live

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!

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Secular Spirituality, Atheism, and Recovery

If you’ve been through recovery, I’m wondering – how has your recovery been impacted (positively, negatively?) when the recovery culture dialogue turns to the almighty? It seems to happen a lot, and there’s a lot of faith-based stuff out there. And if that helps you recover, then I’m all for it! Everyone’s recovery will look a little different and be unique to them, and hope can be found in many different forms.

But for nonbelievers, the prevalence of religious language in recovery can present an additional hurdle – I know it did for me. Early in my recovery, before I got into more structured group therapy with a counselor, I was attending Twelve-Step groups that focused on eating disorders/disordered eating. I couldn’t recommend them for everyone, but it was what I needed at the time. I had hit an all-time low, and a friend told me about a group that met less than two miles away from where I lived downtown. I went the very next day, desperate for anything that might assuage the constant misery and physical discomfort I was in.

I honestly thought that I was going to go there, they would tell me what to do, I would do it and I would get better – just like going to the doctor and getting a prescription. I quickly found out that that wasn’t the case. But what I did find was a new perspective and a sense of hope – the people there spoke about their struggles with honesty and clarity, as well as an unexpected humility. One of the things emphasized in all Twelve-Step fellowships is admitting you don’t have control over everything, and as you work through that it can really give you some room to breathe. However, part of that admitting you don’t have control everything (a notion that often clashes with our Western sense of independence and individuality – but I challenge you to sneeze with your eyes open or to prevent the sun from setting) is turning that control over to a “Higher Power.”

Ugh.

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Skin Deep: Eating Disorder Recovery Tattoos

Currently Reading: Feminism is for Everybody by bell hooks
Currently listening: Handwritten by The Gaslight Anthem 

Sometimes beauty is skin deep – like when it comes in the form of beautiful artwork commemorating a commitment to being healthy and happy through the work of recovery. My own recovery tattoo got me thinking – who else out there has some sweet recovery art? I’ll start us off, and then I’m excited to share some of the really great reader submissions that I received!

My Own Recovery Tattoo:
My recovery tattoo was my first tattoo. I got it over the summer of 2005, when I was 22 and had been in recovery for about two years. February of that year, I smashed the scale I had been using in the alley behind my first apartment with a triumphant and cathartic anger (the avatar for my blog, Twitter, etc. is an actual photo of my smashed scale!). The scale had become a physical representation of the otherwise invisible tormentor known as anorexia, an altar upon which my self-worth was constantly debated. I had been making strides in recovery and was doing very well, but I kept coming back to the scale. In February 2005, I hadn’t weighed myself in months. I came across it, and, in a moment of weakness and curiosity, stepped back on it.

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In Remembrance: Reanna’s Story

In my last post about Lobby Day, I mentioned a story shared at the Congressional Briefing by mother Tracy Smith, who’s daughter Reanna died from her eating disorder while waiting for treatment. Tracy has agreed to let me share her testimony here to further spread the truth about the severity and life threatening reality of eating disorders. I’m deeply grateful to Tracy for her courage and willingness to share this story, and hope that others will learn from it. 

Please note that some of the specifics regarding her daughter’s death may be difficult to hear and are rather emotional, and if you are in recovery from an eating disorder, please take care of yourself while reading.

The following speech was given by Tracy Smith on Capitol Hill on April 24, 2012, at a Congressional Briefing held by the Eating Disorders Coalition as testimony to advocate for the passage of the Federal Response to Eliminate Eating Disorders (FREED) Act.

Tracy Smith testifies on behalf of her daughter.

It has been seventeen months since my baby was taken.

My Family has been devastated by an eating disorder in the worst way possible. On Nov 15, 2010, my Daughter lost her life to an eating disorder. In less than twenty-three months this disease came into our lives and took over my child. Physically, mentally emotionally and in every aspect that you can imagine. Due to misdiagnoses by her pediatrician, lack of education and no coverage for her condition by medical insurance we were alone in the very short battle!

This is Reanna Yvette’s Story.

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The Unlikely Connection Between Punk Rock, Sobriety, and Eating Disorders

Currently Reading: Zen Mind, Beginner’s Mind by Suzuki Roshi
Currently Listening: Minor Threat’s Complete Discography

Along with people being surprised that I used to have an eating disorder (“Really? You?”), I also get surprised reactions when I tell people I don’t drink.

“Really? Never?”

Nope. When I was 15, some of my friends started experimenting with drugs and sneaking downtown to parties to drink with older friends. I didn’t share their intrinsic interest in trying these things, but eventually went along and participated a few times because I was starting to feel left out. My lack of interest in substance use often translated into not being invited to hang out, because people knew I didn’t want to be around it.

After a few times giving it a shot, I decided I really had no desire to ever partake in any of it. I didn’t like not feeling like myself, and I didn’t like the way people acted when they were intoxicated. For a little while, this made me feel like an outcast. I think some of my friends felt judged by my decision, which wasn’t intentional but was sort of unavoidable.

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Success & Failure

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

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