Every Parent's Nightmare

By Dr. Cynthia Bulik
August 2008

I've watched parents and loved ones of people with eating disorders across three decades of clinical practice. These are mothers and fathers who are often so competent and in control in other areas of their life, whose management, or organizational, or legal, or artistic, or even medical skills simply leave them unprepared for the challenge of dealing with a loved one with anorexia nervosa.

I always marvel at parents' ability to persevere and I look for things that can help me understand their situation and provide them with better guidance than I did last year or the year before. Sometimes that better information comes from first hand experience.

A few years back, one of my relatives developed an illness that stumped all of the medical professionals, something you would see on the popular TV show "House" that has everyone puzzled until House himself has an incredible "aha" experience and everything falls into place. Only in my relative's case that "aha" never came; it remained a "we've never seen this before."

So, as a caregiver, not as a clinician, what did I do and how did I feel when the doctors didn't know?

First, I used the skills I had to search every database that might shed some light on his condition. I wanted information. Show me the data! If the doctors didn't have it, I looked for it myself and shared it with them at our next appointment. We were all out there in uncharted waters and I wanted to make sure that the providers who were in charge of my loved-one's care were up on the latest. Even though there weren't enough cases in the world to develop a sound evidence-base for his illness, I needed to know what was out there to guide treatment. The physicians and allied professionals were obliged to give him the most evidence-informed care they could.

In much the same way, this is precisely what we, as health care providers, owe to our patients with eating disorders and their families.

Eating disorders are incredibly challenging. We need to show our respect for the magnitude of that challenge by keeping up on the literature, looking carefully at what has been shown to work and what has been shown not to work, and providing patients and families with the most up-to-date care possible based on what we know.

I don't treat patients now the same way I did back in the early eighties when I was in training. We know so much more now about how to treat these disorders, and we have a moral and an ethical obligation to patients, parents, and loved ones to continually update our approaches as new information about how best to treat these disorders becomes available. In addition, where information doesn't exist, we have an obligation to test new approaches to see if they do work before we market them as effective.

When parents first come to see us, they have hope. Hope that we will be able to provide them with some strategies, something to end the nightmare. Sometimes their hope keeps them from asking the hard questions. Sometimes they're too exhausted to ask the hard questions. Sometimes, they don't know which questions to ask.

We can and should help them ask the right questions. What kind of evidence do you have that what you are going to do works? Can you please point me to the studies that support the types of interventions you are doing? At what point will you realize what you are doing isn't working and try something else? What will that something else be? And, where are my treatment dollars going?

And to parents of children with eating disorders I say, be wise consumers of health care. Ask the questions, get second opinions, and be confident that you are getting the best possible care for yourself or your loved one.


Myth Buster: UNC Eating Disorders Program-SELF Magazine National Survey

By Dr. Cynthia Bulik

About a year ago I was approached by SELF magazine and was asked whether the UNC Eating Disorders Program would be interested in collaborating with them in developing and conducting a national survey of women between the ages of 25-45 in order to get an unfiltered snapshot of disordered eating behaviors in American women.

What's important about this survey is that it was conducted on-line. People were invited to participate via an email blast. So there is a bias there that only people with email would be eligible to participate, but current data suggest that a high percentage of women in this age bracket are on-line. At no point were SELF or UNC ever mentioned in the survey. We did not want to have an over-representation of SELF readers or Tar Heel fans who completed the questionnaire.

What we found was astonishing and busted some traditional myths about disordered eating behavior. Sixty-five percent of American women between the ages of 25 and 45 report having disordered eating behaviors and an additional 10 percent of women report symptoms consistent with eating disorders such as anorexia, bulimia nervosa and binge eating disorder. Unhealthy eating and weight control practices are rampant among women in our society.

One of the myths that we busted was that disordered eating is somehow limited to white upper middle class young women. This couldn't be farther from the truth. Disordered eating behaviors cut across racial, ethnic, age, and socioeconomic lines. Women who identified their ethnic backgrounds as Hispanic or Latina, white, black or African American and Asian were all represented among the women who reported unhealthy eating behaviors.

An eye opener for me was the high number of women who reported engaging in unhealthy purging activities. More than 31 percent of women in the survey reported that in an attempt to lose weight they had induced vomiting or had taken laxatives, diuretics or diet pills at some point in their life. Among these women, more than 50 percent engaged in purging activities at least a few times a week and many did so every day. Since the majority of the women were overweight, this tells me that women are resorting to desperate and potentially dangerous means to try to keep their weight under control. Unfortunately, these methods are entirely ineffective.

I fear that many of these behaviors have become normative. It is almost expected that a women be dissatisfied with her body or say she is trying to lose weight. When's the last time you heard a woman (especially a maturing woman) say "I am really proud of how I look and who I am." Even supermodels are expected to point out their flaws. Body dissatisfaction is the cultural norm. If a woman were to proclaim satisfaction with her appearance, women around her would doubt her veracity or wonder what she's hiding.

Yet, we have to work as a team so that we can model appropriate body acceptance to the girls in our life. When they hear us harping on our flaws, complaining about the size of our various body parts, saying how clothes always make us look fat, we are the role models who teach them how to talk about their own bodies. We all want our children to have more respect for their bodies than we did-to treat them better and to speak more kindly about them. We often talk about our bodies in ways we would never think of talking to another person-it would be too disrespectful and rude. The next time you hear yourself dissing your body, ask yourself whether you would ever speak to someone else that way and why it should be OK to speak to yourself in such a disrespectful manner.

The UNC-SELF team developed several tips to help women change their behavior. Some of the most important are: adopt a moderate approach to eating, eat a healthy breakfast every day, separate food from mood (this means learning new skills to deal with emotions rather than turning to food every time uncomfortable emotions arise), and find realistic body role models. Finally, we encouraged every woman to work on making these positive changes and to do it for the girls in your life!

Women can take a version of the survey at www.self.com to see how they compare with other readers' answers and share their thoughts in the Hot Topics section of the magazine's Web site.

For more information about the UNC Eating Disorders Program, visit www.unceatingdisorders.org. For general facts about eating disorders visit the Academy for Eating Disorders Web site at www.aedweb.org.


Cynthia M. Bulik, PhD, is director of the Eating Disorders Program at the University of North Carolina Hospitals and the Past-President of the Academy for Eating Disorders.



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