Many parents who have a child with an eating disorder face years of treatment that doesn’t seem to work. It’s frustrating to try so hard and spend so much money and energy working against an eating disorder that won’t budge. So what’s missing? Why is this so common?
First, of course, eating disorder treatment works for many people. But it’s also true that eating disorder treatment doesn’t work for other people.
I’m not criticizing any of the hard-working professionals in the eating disorder field. Nor do I suggest we throw out what’s already working, but I do wonder: what’s missing? What else could we be doing to make a greater impact on shortening the duration and reducing the severity of many eating disorders?
A big part of the problem is that eating disorder research is chronically underfunded. So compared to almost any other serious condition, there is relatively little scientific data to work with, particularly with non-anorexia diagnoses. Most of what we know about treating eating disorders comes from small studies, trial and error, and is the result of tremendous effort by parents, professionals, and people who have/had eating disorders.
My unique perspective on eating disorders comes from a combination of research and lived experience. I had an eating disorder for most of my life. Since recovering, I’ve been dedicated to understanding, decoding, and writing about eating disorders.
My coaching work with parents who have kids with eating disorders has shown me just how frustrating traditional treatment can be. Meanwhile, my work with professionals shows me how much they care and how much they want to help. And in talking with people who have/had eating disorders, I know they’re frustrated, too.
So what do I think is missing from most eating disorder treatments? Why does eating disorder treatment often have frustratingly elusive results?
Here are some of my current opinions and thoughts about why eating disorders remain so difficult.
Why an eating disorder?
When working with a family that has an eating disorder the first thing I want to know is “What is driving this behavior?” When eating disorder treatment doesn’t work, I wonder whether we understand what’s driving it.
Eating disorders don’t come out of nowhere. They have a reason and a purpose. When we address the reason and purpose for the eating disorder we can treat it more effectively.
When a child rejects food, binge eats, or purges, I want to know what’s going on beneath the behavior. What’s driving it?
*I realize that in FBT the premise is that we don’t worry about the “why.” I’m trained in FBT and agree that when we’re facing a medical crisis, we need to address the medical crisis (e.g. weight suppression) first and foremost. We need to get the medicine of food into the body. But to ignore the “why” is missing the big picture in a mental health condition like an eating disorder.
The old way of thinking about negative behaviors was that the child was “abnormal,” “manipulative,” or “looking for attention.” But what we’ve learned from recent developments in neuroscience is that in fact, behavior is a way for a person to meet a primal need for emotional safety.
💡 Emotional safety: when a person’s nervous system, beliefs, and thoughts are cohesive, calm, secure, engaged, relaxed, and open to other people.
Once we learn to address emotional safety, we can help the person feel better. And most of the time when a person feels better they will have less need for the behavior and be in a position to learn cognitive skills for managing the urge to perform the behavior. It is virtually impossible to utilize cognitive skills and knowledge when you lack emotional safety.
💡 Cognitive skills: using your prefrontal cortex to acquire knowledge, manipulate information, and reason.
Diving in with cognitive skills for managing eating disorder behaviors is where most treatment begins. But its effectiveness is limited because an eating disorder is not typically a cognitive, conscious process. It does not arise from conscious thought. Therefore it’s not a choice. It is in response to the need for emotional safety.
A bottom-up behavior
Treatment often involves telling people that their eating disorder is dangerous, will hurt their health, etc., and provides strategies for overcoming urges. This may give us insight into why eating disorder treatment often doesn’t work. While these top-down approaches may be perfectly logical and technically useful, they are all cognitive. And since eating disorder behaviors are bottom-up vs. top-down behaviors, they often fail to make a difference.
💡 Bottom-up: arising from the nervous system, primitive areas of the brain, embedded memories, etc
💡 Top-down: arising from conscious thought; using cognition and language
I believe that almost all eating disorders begin with bottom-up issues. Therefore to help a child recover from an eating disorder we need to address bottom-up processes. This is done using something called emotional regulation.
💡 Emotional regulation: the act of noticing, accepting, and processing signals from the nervous system to achieve a calm, engaged emotional state.
Once they have learned emotional regulation, a person’s urges for eating disorder behaviors are greatly reduced. In this place, they are available to do cognitive work on the eating disorder.
Bottom-up processes drive most compulsive behavior. Therefore until we address these processes, we will not be successful in our top-down treatments.
💡 Compulsive behavior: a behavior that is not driven by logical, conscious choices, including most eating disorder behaviors. The person feels “driven” to complete the behavior even if consciously they do not want to and/or are ashamed of the behavior.
Why the eating disorder exists
Unless medical weight gain is needed, rushing into mental health treatment without understanding the “why” of the eating disorder is typically an exercise in frustration for everyone (the child, parents, siblings, treatment providers, etc.).
You can tell your child that they need to eat or stop purging for months and years with very little impact. This isn’t because what you’re saying isn’t true. It’s also not because your child is hopeless or disrespectful. It’s because treatment is working on the wrong end of the equation.
The more we push cognitive processes in eating disorder treatment, the deeper the eating disorder may dive. It can be incomprehensible that with all this knowledge and expensive treatment a child still doesn’t get better. Especially because many times the child is engaging in treatment and telling you they want to get better. But once you understand the role of top-down vs. bottom-up processes it makes a lot of sense.
Typically we focus on the behaviors of making them eat, stopping the binge or purge, etc. And don’t get me wrong: parents can and should set up structures for behavioral change. But without understanding and addressing the “why” or the driver of the eating disorder, which typically lives in the emotional (non-cognitive) system, we will likely see very little change.
Seeking behavioral compliance without understanding why the behavior exists is a recipe for frustration and ineffective treatment.
Bottom-up treatment for eating disorders
I’m not suggesting that all eating disorder treatment is ineffective. After all, I teach behavioral strategies to my clients. And many people do recover using current standards of care. What I do think we need to see happen however is the addition of bottom-up treatments.
Today we have the power of neuroscience. We understand the nervous system in ways we never did before. Research and insights from people like Drs. Daniel Siegel, Tina Payne Bryson, Pat Ogden, Peter Levine, and Stephen Porges help us understand behavioral problems through an entirely new lens.
This new lens is being applied in many areas, including treatment for ADHD and autism. It’s revolutionizing the way we treat addiction. I believe it should be applied in the treatment of eating disorders. And parents and professionals who are doing this are seeing positive results.
I don’t think we need to overthrow current treatment, but I do think we’re missing out on huge opportunities to treat the bottom-up side of eating disorders. Here are the things I’d like to see added to treatment:
Today most treatment focuses on medical (weight and bloodwork), psychological (cognitive therapy), and nutritional. These are all necessary and helpful. But I’d like to see an expansion into therapies that address the nervous system. These can include things like:
- Somatic therapy
- EMDR (eye movement desensitization and reprocessing)
- Vagus nerve exercises and toning
- Mindfulness meditation
- Trauma-informed massage and bodywork
These therapies don’t rely on cognitive processes but instead tap into the body to soothe and regulate the nervous system. Just like with traditional therapies, it is important to check the professional’s credentials, training, and track record in working with trauma and eating disorders. One caution is that working with the body like this requires a great deal of skill and conscious attunement. This is still a new and growing area of treatment, so pay attention to how it feels and seek another option if you sense it’s not having a positive impact.
Today most treatment focuses on the child who has an eating disorder. When parents are involved, it’s typically in the areas of feeding, possibly attending some family therapy (cognitive), and getting the child to treatment appointments. These are necessary and helpful.
But I’d like to see an expansion of the parent role into learning how to use emotional co-regulation to help the child. Our children are not born with the ability to self-regulate. They learn how to do this with our support and through repeated experiences of co-regulating with us. Parents who learn to intentionally co-regulate with a child who is struggling with behavioral disorders can make a huge impact. It takes some training and practice, but it can also transform your relationship and ability to support your child’s recovery.
To get started, you can download my eBook: Emotional Regulation Skills for Parents Who Have Kids With Eating Disorders. In this eBook you’ll learn how to recognize the different emotional states and how to respond, plus powerful worksheets to help you get started.
A new way forward
My experience in working with parents and professionals is that everyone desperately wants to help kids recover from eating disorders. I do not believe there is a lack of trying or love in the treatment of eating disorders. But I do think there is room to expand professional treatment and empower parents to engage more fully in effective treatment.
Ginny Jones is on a mission to empower parents to raise kids who are free from eating disorders. She’s the founder of More-Love.org and a Parent Coach who helps parents navigate eating disorder recovery.