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?
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.
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!