Today, I’m pleased to present an interview with Jane Cawley. Jane and her family helped her daughter, then age 14, recover from anorexia nervosa with family-based treatment in 2004. Ever since, she’s worked tirelessly as an advocate for eating disorders, actively helping parents find and better understand information on eating disorders and the treatments available.
She co-chairs Maudsley Parents — a fantastic organization for parents! — with Harriet Brown and serves on the steering committee of NEDA’s Parent, Family, and Friends Network. I highly recommend readers check out their website, because it’s packed with valuable information and provides lots of support.
Jane is incredibly well-versed in the eating disorder literature, and keeps up-to-date on relevant research, so I was thrilled to have the opportunity to interview her. And, not surprisingly, her answers were informative and insightful.
Below, we talked more about Maudsley Parents, the warning signs of eating disorders and how parents can help — and more! Stay tuned for part two of our interview tomorrow.
What are some of the biggest misconceptions about eating disorders that you’ve run across in your advocacy work?
The one that bothers me most is that eating disorders are a choice. It’s a very damaging myth, and contributes to the idea that people with eating disorders have brought these troubles on themselves, or that they’re willful or manipulative.
In reality, eating disorders are very serious, debilitating illnesses. If we buy in to this idea, it affects how we think about treatment. If people with eating disorders are “choosing” to be ill, then they need to “decide” to get better.
But once an eating disorder takes hold and a pattern of starving or of bingeing and purging has developed, the eating disorder takes on a life of its own and is largely outside the sufferer’s control. It’s unrealistic to expect them to “snap out of it.” People with eating disorders don’t need blame; they need help.
Maudsley Parents is a must-read website that provides valuable information to parents and families. Can you tell readers more about this website?
Thanks so much! It’s been a “Stone Soup” effort all along with lots of input from parents and professionals who’ve shared their stories and expertise. As parents, we wanted to gather together information we wish we’d had when our kids were first ill.
The site offers many kinds of resources, including a list of treatment providers who use family-based treatment, articles on putting together a treatment team and other practical matters, parent-to-parent recipes and tips, an “Ask an Expert” column, links to the latest research, and a series of video interviews with some of the best researchers in the country, talking about various aspects of eating disorders and their treatment.
Last year, we branched out beyond the web and held our first conference in Bethesda, with the goal of bringing together parents, community clinicians, and leading researchers. Response was so great; we decided to do it again! We’ll have another one-day conference in Chicago on April 26th with Dr. Daniel le Grange, Dr. Walt Kaye, and a parent panel. We hope to make the conference an annual event. It’s an exciting time for eating disorder research; scientists seem to be turning a corner in understanding eating disorders. We’re happy if we can help get that information into the hands of families fighting these illnesses.
We want our site and events to be as family-friendly as possible and welcome feedback and suggestions. Readers are invited to email us at firstname.lastname@example.org with any input.
What should parents look for regarding signs of an eating disorder?
You often come across lists of warning signs for anorexia nervosa that include things like limiting food portions, cutting out groups of foods, avoiding family meals, exercising excessively, and becoming secretive.
In addition to behaviors, parents sometimes notice anxiety or uneasiness about eating, or preoccupation with food, calories, or exercise. Eating meals as a family can help parents understand how much (or how little) their child is eating and how difficult it is.
Parents might notice weight loss, or a child may simply fail to gain weight when s/he should. Bulimia can be even more secretive, but if parents notice any signs of bingeing and purging, they should take it seriously. The bottom line is that parents should trust their gut feelings.
If a parent notices their child is showing these signs, what should be their first steps?
If parents are concerned, they shouldn’t push those worries aside. An appointment with a pediatrician, preferably one with experience treating eating disorders, is in order. In addition to getting a medical assessment, they’ll want and seek specialist treatment.
It’s important for parents to educate themselves, especially on family-based treatment, which is currently the most effective evidence-based treatment for adolescents with eating disorders. Having a child with an eating disorder is scary and can seem overwhelming, but parents should know that there is a lot they can do to help. With good treatment and family support, there is every reason to be hopeful.
One of the quotes that struck me from a 2005 article was Dr. Daniel le Grange’s statement that parents are not fighting a stubborn child but a disease. I believe this idea that eating disorders are a choice is still tremendously pervasive and can prevent people from seeking treatment. Can you talk more about this?
This is a key point. Understanding the true nature of eating disorders helps us in so many ways. Moving past the idea that people are “deciding to do this to themselves,” allows us to re-focus energy on recovery, without getting bogged down in blaming people for being sick. As you point out, people with eating disorders may even blame themselves, which can be another factor that keeps them stuck in the illness.
There are some really talented writers who’ve suffered with eating disorders and present us with a vivid picture of just how miserable and isolating these disorders are. The last thing we need to do is heap blame upon people who are already having such a hard time. Eating disorders happen to some of the nicest people you’d ever want to meet.
Thank you so much, Jane, for sharing your insight! Stay tuned tomorrow for part two of our interview where Jane talks more about family-based treatment, what parents can do to help their child recover, valuable resources and more!
If you’re the parent of a child who’s recovering from an eating disorder, what would you like others to know? What other questions do you have about eating disorders in children? Let us know and we’ll be happy to answer them!