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.

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.

All photos courtesy of Jim Knapp unless noted.

The EDC advocates for legislative reform to better improve access to treatment, advance research, and educate both professionals and the public about eating disorders. If you or someone you know have ever had to seek treatment, then you know it’s often difficult. This is because of a complicated mix of disputes over diagnosis, established guidelines, and a misunderstanding of eating disorders.

Even though the American Psychiatric Association has compiled very specific and detailed guidelines for treatment, insurance companies have no obligation to follow them and often make up their own guidelines – which physicians often don’t have access to even while treating patients. So even if treatment is approved, it’s hard to know if it will be the kind of comprehensive treatment a particular patient needs.

Jeanine Cogan & Kathleen MacDonald. Jeanine is the EDC Policy Director. Kathleen is the former EDC Policy Assistant and now applies her expertise at Kantor & Kantor LLP.

The legislation the EDC is advocating for is called the Federal Response to the Elimination of Eating Disorders (FREED) Act, and it would help address these problems. It also contains provisions for helping medical professionals know what to look for and how to treat the specific physical health problems that can threaten the lives of eating disorder patients. You can read a full summary of the FREED Act here, along with some background and history here.

[Fun fact: the idea behind FREED, the elimination of eating disorders, was also the inspiration for my blog title!]

The EDC wouldn’t exist if not for the tireless work of the advocates who make up the organization. Spring 2013 marks the first event under the leadership of new EDC President Johanna S. Kandel, author of Life Beyond Your Eating Disorder. A common statement from first-time advocates is often: “What difference does my being here make?”

Well, Johanna came to Capitol Hill ten years ago to lobby with the EDC and got a meeting with her Congressional Representative, Ted Deutch. Their meeting educated him about eating disorders and their severity, as well as putting a human face on them. We can quote statistics all day long, but sometimes a personal testimony says more than amount of data.

Now in 2013, Representative Deutch is championing the FREED Act in the House of Representatives and has made eating disorders a priority during this Congressional session – and it’s all because of Johanna’s hard work and advocacy.

Johanna Kandel (far left) with EDC board members, guest speakers, and Ted Deutch.

Myself and Ted Deutch after the briefing. So grateful for his commitment to FREED & the EDC!
(Also, when did my hair get so long??)

I also want to say thanks to the offices that took the time to meet with the Virginia Team: Senator Mark Warner, Senator Tim Kaine, Representative Bobby Scott, and Representative Morgan Griffith. Virginia is already a leader on eating disorders with HB1406 establishing screenings in public schools, and I’m looking forward to Virginia carrying the torch and seeing our Congressional reps take up the cause!

Our next Lobby Day is September 18, 2013. Even if you can’t make it to DC, there are plenty of ways you can make a difference and advocate for FREED! Consider doing the following:

• contact the local offices for your Congressional Representatives in your district to meet with them and/or their staff
• write letters to their offices and share your own stories about how eating disorders have affected your lives, asking them to support FREED
• donate to the EDC to support their ability to advocate on Capitol Hill, or hold a fundraiser of your own

Shout-out t0 Kari Adams of The Kari Adams Show for making the trip to DC and cover the policy side of eating disorders! Below is an interview she did with Gail Schoenbach, the Executive Director of the F.R.E.E.D. Foundation and current EDC Treasurer, along with some other pictures from Lobby Day!

Some seriously perfect weather on Captiol Hill.

Ran into the Minnesota team on our way to the briefing! (Thanks Britt for the picture!)

Team Leader meeting at the reception the night before. So honored to be working with so many amazing people! Also, I’m the only one with my eyes closed.

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

Team leader brainstorming!

 

Myself and other advocates during the reception.

Full photo sets available on the EDC Facebook page. Videos from the briefing will be made online shortly. For past Lobby Day coverage and testimonials, click here to search for all posts tagged ‘FREED’.

So what are you waiting for? Come join us in Washington, DC and help us END eating disorders!

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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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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:

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.

Eating Disorders Coalition Spring Lobby Day 2012!

Do you know what the FREED Act is? It’s the Federal Response to the Elimination of Eating Disorders, and it’s a bill that we need YOUR help to pass.

For over a decade, the Eating Disorders Coalition (EDC) has been active on Capitol Hill working with the federal government to help make eating disorders a federal health priority. With the highest mortality rate of any mental health disorder, we need a bill like the FREED Act to help those who suffer from eating disorders get the help they need and deserve.

I’ve been volunteering with the EDC for 5 years now, and am currently a Junior Board member. Sometimes people ask me if I really think lobbying is worth it because of how complicated and partisan politics can be. I’ll admit, it can be discouraging. But those in office really do pay attention and listen to people who take time out of their lives to come and discuss issues with them. There’s so much misinformation out there about eating disorders that we need people who have had real-world experience with them to come and educate lawmakers. Putting a face and a name to a real story goes a lot farther than any statistics, no matter how shocking or upsetting they might be.

Review: Miss Representation

I finally got to see Miss Representation last night, courtesy of a local event for National Eating Disorders Awareness Week. Released in late 2011, it’s a film exploring the role of women in our society and what we can do to change the disparities that exist.

It’s easy to hear about such a film and say, “But so much progress has been made!” While this is true, and yes, progress continue to be made, it’s slowed down more than you think. I’m not always one to tout statistics, but some of the figures they’ve researched are quite startling. For example:

• The average teenager consumes roughly 10 hours, 45 minutes of media per day, between television, movies, the internet, and music, the majority of which is TV watching.
• Of that media consumed, women own less than 6% of TV stations and roughly 6% of radio stations. The board members of the biggest media companies (such as Viacom, Time Warner, etc) systematically outnumber women by more than 2-1, so most of the media being produced and approved is from rich men.
• Women make up 51% of our population at present, but are only 17% of Congress (even I was surprised by how low that number is).

Mad yet? You should be.

Matt Ryd Testimony

Just a quick post to share this incredibly moving and touching video, which happens to be from another guy named Matt (but he’s apparently a way better singer than me!)

Please watch, share, repost, and if you dig his music (which is accompanying the video), you can purchase here and all proceeds are going to the National Eating Disorders Association between now and March 4th.