The FREED Act

There used to be a character on Saturday Night Live named Stuart Smalley, who was the host of a fake self-help show (pictured above-haha). I never really watched it because I was young when it was on, but I have seen highlights of it on different SNL highlight shows. Anyways, the character in this sketch is obsessed with twelve-step programs, and is involved in a number of them. He isn't a trained therapist, just someone who is trying to overcome his own addictions and help others on this same journey. His famous line, as you can see from the picture above, is something that he would look in the mirror and repeat to himself as a positive affirmation: "I'm good enough, I'm smart enough and doggone it, people like me!" He had many catchphrases that poked fun at 'psychobabble' and self-help lingo. He even turned this sketch into a movie called Stuart Saves His Family--I had to watch it for a class once and write a paper on it :-).

Anyways, in an ironic twist of fate, Al Franken, who played the role of Stuart Smalley, is known also for his political work- he is currently a senator in the state of Minnesota and is advocating for eating disorders! Amy Klobuchar, also a Minnesotan senator, and Tom Harkin, a senator from Iowa, have teamed up to introduce a new bill which Franken is sponsoring. This bill is called the FREED Act (Federal Response to Eliminate Eating Disorders) and it's goal is to "allocate research money to the National Institutes of Health to better investigate the causes of eating disorders and improve treatment methods. The research would also seek to improve public data on eating disorders, including morbidity and mortality rates." This quote was taken from an article published in The Minnesota Daily and the article in its entirety can be read here. The gist though is summarized in a quote Franken gave to the paper- he said, "We don't know nearly enough about diagnosing, treating and preventing these diseases. [This] legislation is a major step forward in understanding eating disorders and how to stop them from destroying lives."

To put things into perspective, the NIH (National Institutes of Health) allows $1.20 towards research per person with an eating disorder, contrasted with $159 towards research per person with someone who has schizophrenia (whose prevalence is significantly less). That is pretty staggering!! Last week was lobby day for the Eating Disorders Coalition, and this was an exciting day for eating disorder advocacy! I have no political agenda that I push when I write my blog- however, I think it is important for us to know the facts and to be educated, and to be able to act if we feel moved to do so! To read more on this act and what it aims to do, follow this link. If you are interested in finding out how YOU can advocate for increased eating disorder funding for research, prevention and treatment, follow this link to write to your Congressperson!

Someday Melissa

There has been quite a bit of media coverage over the last two or three days on the story of Melissa Avrin, a 19 year old girl who lost her battle with bulimia last year. (The cause? A heart attack.) Her mother, Judy, was on the Today show last week and there have been a few articles published recently, all aimed at raising awareness about eating disorders, but also honoring and remembering Melissa's life. Judy has become an advocate and will be lobbying tomorrow April 26, and April 27 in Washington DC to support the FREED Act (Federal Response to Eliminate Eating Disorders Act). To find out more about the advocacy work that you can take part in, follow this link which will take you to the Eating Disorders Coalition site.

But back to Melissa's story- I would really, really encourage you to check out this article, which was published in the New York Times on April 21st. Judy has been raising awareness and speaking out about losing her daughter to an eating disorder over the course of this past year and she is also finishing up a documentary on her life (called Someday Melissa), which she is hoping to have completed by June. Sharing Melissa's story may help to dispel myths about bulimia, as well as connect a face and a story with an illness that is so commonly misunderstood. Melissa was young- 19 years old- and did not survive her battle with bulimia. Her eating disorder took her life, and it is a really heartbreaking story. What is so tragic is that she represents so many who struggle; while many do overcome this battle, there are still some who are like Melissa and are losing their fight. The more that we all can do to raise awareness, provide education, and advocate for more accessible treatment is a step towards saving lives.

To view a trailer of Judy's documentary on Melissa's life, follow this link. It is definitely worth checking out. It is a short, five minute video that is really powerful. Judy found Melissa's journal after she passed away, and after reading through it, was inspired to make a movie that would change peoples lives- as that was one of Melissa's goals that she had journaled about wanting to accomplish someday. Judy is using her grief to advocate, raise awareness and instill hope in the lives of others who are struggling with an eating disorder. If you or someone that you know is struggling with an eating disorder, I hope that Melissa's story may inspire you towards health. You are not alone, and it is possible to beat this disorder with the right treatment! To read different stories of hope and freedom from eating disorders, courtesy of the National Association of Eating Disorders (NEDA), follow this link.

When Is It Time To Speak Up?

Nancy Matsumoto (a freelance journalist who has contributed to the New York Times, Newsweek, Time, etc..) and Marcia Herrin (a nutritionist specializing in eating disorders who founded the Dartmouth College Eating Disorders Prevention, Education and Treatment Program), have co-authored a great book called The Parent's Guide to Eating Disorders. They also have a blog called Eating Disorders and Nutritional News. To read a little more about Nancy and Marcia, follow this link! I wanted to share a recent blog post written by Nancy because I think it is a very authentic post that addresses a topic that people often ask and wonder about. The title of the post is 'Knowing When to Express Concern About a Friend's Eating Disorder.' Follow this link to read it, or you can read it below (copy and pasted).

In other fun news, I had the opportunity to ask both Nancy and Marcia some questions recently about some different eating disorder topics which I am excited to share with you soon! :) :) Follow this link to check out their website.

Knowing when to express concern about a friend's eating disorder

A recent experience reminded me that even when we know what the right thing to do is, it’s still hard to know when to do it. Over the course of the past year, I have become friends with a woman, I’ll call her Jane, in my Japanese language class. I recognized the telltale signs of anorexia in her right away: the hollow cheeks, the clothes hanging off her skeletal frame, the way she liked to bring food for others, but didn’t want to eat much herself.

Later, Jane told me that she did not see herself as too thin, she thought she looked normal, maybe even a little bit heavier than she wanted to be. This, too, is a classic symptom of the body dysmorphic disorder that often accompanies anorexia.

I wondered if I should say something, to express concern and find out if Jane was in treatment. Had I been just half as emaciated as Jane was, I would not have been able to think straight; I would have felt dizzy and probably fuzzy-headed from malnourishment. But Jane’s mind was razor sharp. She was an encyclopedia of kanjicharacters, devoured the finer points of grammar that made my eyes glaze over, and read the appendix of our dry text book for fun.

Although she was always the most prepared person in our class, Jane was also always late to class. I thought she had a job that she couldn’t leave early. Later, she told me that she had no job; the digestive problems caused by her anorexia meant that she simply had to wait until she felt well enough to leave her apartment. Often, she didn’t arrive until the last 20 or 30 minutes of our two-hour class.

Then Jane went away to Florida on vacation. It was sunny and warm there, but she returned with a wretched cold and looked thinner than ever. She looked terrible. “Feel my hands,” she told me and another classmate. Even though our classroom was overheated as usual, her hands were icy cold. Suddenly, she had entered crisis mode. Being in Florida surrounded by friends who were healthy, fit, and enjoyed active, outdoor lives had suddenly made her want those things for herself. She looked in the mirror and for a moment saw how different she looked, how starved and unhealthy the woman who stared back at her was. It was a moment of clarity that lasted long enough for Jane to realize she needed help.

For the first time, Jane also opened up to me and a few others in our class about her eating disorder. She was desperately seeking a treatment center, she told me. Even though all the doctors she spoke to felt she should be hospitalized, she hoped to stay at home and find outpatient treatment. I was scared for her life, and I could tell she was, too. I berated myself for not saying anything earlier. Maybe I could have prevented this sudden and horrible downturn. I knew what was happening to her and I didn’t say anything.

I thought that she would think me too pushy, or a know-it-all. I worried that I would be intruding. After Jane spoke openly about her worries, I was able to refer Jane to Marcia, who then recommended a good psychologist in New York for her to see. When I saw Jane at class yesterday, she told me she liked her therapist but was worried that she would not be able to afford many more treatments. She couldn’t afford to spend the $5,000 out-of-pocket minimum her insurance plan required before it would cover 50 percent of the therapist’s bills. Even paying for half of the treatments would be a stretch.

When I asked Jane today whether it would have offended her if I had spoken up, she told me, “I wouldn’t have reacted negatively, because I know what’s going on with me. I’m not sure that I would have done anything about it; you have to be ready.”

The kind of epiphany she had recently, when she recognized what she looked like and how sick she was, Jane told me, has happened before, although it never lasts. “I want to do something, and then I’ll go into hibernation again,” she said. Two weeks ago she had a phone interview with the Renfrew Center in Pennsylvania, but then decided not to go.

Jane said she wanted so much to be healthy and active but added, “I don’t know how to be active, to sleep and to squeeze food in. I can’t eat because it makes me feel bad, and I’m afraid I will get sick. I’m like a child; I want to be taught to eat again.” Then, she added, “I don’t know if I’m going to make it. If this can help someone else, please write about it.”

I asked Marcia if she thought I had done the wrong thing by waiting to voice my concerns to Jane. Marcia responded, “You have to trust your instincts on when to speak up, and it sounds like you did. I have reminded other concerned friends in similar situations that you can trust your instincts if your motives are pure. We all need to remember that we can't force another adult to take action (without taking legal action first). What Jane needs now is encouragement to hang in there long enough to benefit from treatment. Sometimes this is a good time to suggest or lend a book. Maybe Life Without Ed byJenni Schaefer or, Gaining: The Truth About Life After Eating Disorders, byAimee Liu. Good books can lead to good discussions, too. “

As a nutritionist who often sees eating disorders patients who cannot afford professional treatment and/or have difficulties with insurance issues, Marcia told me, “I have lots of thoughts about this.” The first is that Jane’s dilemma is typical of our insurance system, which slaps large deductibles on eating disorders treatment and follows with inadequate reimbursements. The patient goes without treatment and, in the worst cases, ends up hospitalized in an intensive care unit at upwards of $1,000 a day.

Marcia’s second thought was that it is often hard for patients make recovery their number one priority in life; everything else should be secondary. This is not easy in cases where the patient doesn’t have the complete support of loved ones, however.

Jane’s comment about feeling like a child who needs to learn how to eat again, Marcia noted, is a perfect description of what a good nutritionist can help an eating-disordered patient do, and why seeing a nutritionist or dietitian who specializes in eating disorders is so important.

“Another thing that can be inspiring,” Marcia said, “is to help the other person see that her life is important to others—children, spouses, families, friends, even pets, and to you!”

I will tell Jane that she is important to me, and to our class. I hope that if you are concerned about a loved who is in despair over an eating disorder, you will do the same thing.

Take care,

Nancy

Marcia Herrin and Nancy Matsumoto, co-authors, The Parent’s Guide to Eating Disorders, Gūrze Books, (www.childhoodeatingdisorders.com).

Bring Change 2 Mind

I just started watching a TV show recently called Modern Family. It is hilarious. I've only seen it a few times, so I'm not sure I can do the premise justice, but it's essentially a sitcom that chronicles different members of an extended family and their interactions. (If you're curious, follow this link to check it out.) Anyways, I really do like it, but last week when I was watching, one of the characters made a joke about eating disorders. It's hard to explain what happened since I don't really know any of the characters names, but one of the children was annoyed with his mother and said- "mom, go tend to your eating disorder or something." I'm not sure if this was supposed to be funny, but after the day I had, I was NOT laughing. An eating disorder is a mental illness, and there's nothing funny about that. I didn't turn off the TV and refuse to watch the rest of the episode, but it just struck me that if you replaced 'eating disorder' with any other mental illness- say, schizophrenia- it probably wouldn't be funny either. So why did someone think making a joke about an eating disorder would be funny? This just reminded me that eating disorders aren't widely viewed as psychiatric illness yet.

I think one of the biggest myths about eating disorders is that they are a lifestyle choice- not a mental illness. Yes, there is choice involved in recovery- you have to choose to take steps to recover. But an eating disorder is a mental illness, so it's not as simple as 'just eating'. Glenn Close, the actress famously known for playing Cruella Deville in 101 Dalmatians (ha ha, just kidding- I think she is famous for her role in Fatal Attraction, which I've never seen-- and some other movies too..), started a non-profit called Bring Change 2 Mind. The mission is to raise awareness about mental illness, to work towards de-stigmatizing it while also providing support for those who deal with mental illness. Close's sister and nephew, who both suffer from different mental illnesses, were the inspiration that fueled her to initiate this endeavor. PsychCentral wrote a little article awhile back in October when it launched - to read it, click HERE.

I'd encourage you to check out her site! I'll be honest- right now, there is a slightly annoying pop-up when you access the site, but that's just because Bring Change 2 Mind recently partnered with NAMI (National Alliance on Mental Illness) for NAMIWalks Campaign (a walking campaign to raise money for and awareness of mental illness!). The pop-up is a video, and even though it's slightly annoying, it's actually worth watching :) Once you get past the video, the site is great- there are resources for those who want to learn about mental illness or find support if they are struggling with one, there are videos of people sharing their stories, and there is additional information available that serves to encourage real understanding of mental illness! Right now, eating disorders are not part of their featured mental illnesses- they feature depression, post traumatic stress disorder (PTSD), bipolar, and schizophrenia. However, there are many mental illnesses, eating disorders included, that will hopefully be added as their non-profit grows! At this point, what seems important is that this is an organization that is dedicated to promoting awareness and knowledge about mental illness to de-stigmatize... which is awesome. If you are interested in finding out how you can be involved in any capacity, you can check out the 'be involved' tab on their site!