The problems with an eating disorder diagnosis

It’s not easy to get a diagnosis or be treated for an eating disorder

Getting diagnosed and treated for an eating disorder can be a problem. In our series to help parents understand eating disorders, we take a look at how the diagnosis of an eating disorder can be a challenge. This article is a great companion to the free eBook, What Kids Want Parents to Know About Eating Disorders. Please feel free to get a copy.

If you have a child who has an eating disorder, then you have probably been told that eating disorders are “complicated.” So what does that mean, and why are eating disorders considered so complicated? More importantly, how can parents help? This is Part 4 of a series about eating disorders. These four elements combine to create the complexity of eating disorders. They are:

In this article, we’ll untangle the fourth element, the eating disorder diagnosis. And we’ll take a look at how having an eating disorder diagnosis can create challenges. These are mainly due to a lack of education and understanding as well as limited care and insurance reimbursement. I’ll also provide some tips for parents who want to help their child recover.

How an eating disorder diagnosis can be a problem

There are three reasons the eating disorder diagnosis can be a problem:

  1. Misunderstood: lots of people think of eating disorders as based on vanity and having a certain “look”
  2. Low education: few people, from parents to educators and healthcare professionals, will have training in recognizing and treating eating disorders
  3. Specialized care needed: eating disorders often require multiple care providers, including medical, psychological, and nutritional

An eating disorder is not like having a physical diagnosis like a broken arm or cancer. First, many people will never receive a diagnosis. This is because we tend to misunderstand eating disorders and assume eating disorders are based on low weight. Therefore, if a child doesn’t have low weight, few people will recognize the eating disorder. Without a diagnosis, the eating disorder can dig in and become more entrenched with time. Then, once an eating disorder is diagnosed, it requires multiple care providers. These providers may or may not work together, and it can be expensive and confusing to navigate the system.

1. Misunderstood: lots of people think of eating disorders as based on vanity and having a certain “look”

Eating disorders are misunderstood. They have been portrayed as conditions that affect only young, white girls. And they are almost always presented as looking like low-weight anorexia. But low-weight anorexia is actually the least common eating disorder. And eating disorders affect people of all genders, races, and socio-economic levels.

The media presents eating disorders as primarily based on vanity or achieving a certain appearance. They are called “silly” and even “ridiculous.” Meanwhile, binge eating disorder is presented as a “food addiction” and even “gluttonous.” Bulimia is rarely presented at all because it’s generally considered shameful, even “disgusting.”

But eating disorders look almost nothing like their media presentations, and no eating disorder is a choice. It’s a serious mental disorder built on distorted thoughts and beliefs. Behavior is the symptom, not the cause.

Tips for Parents: You can help your child by learning about what eating disorders are, and what they are not. Explore your biases and assumptions about what it means to have a child who has an eating disorder. Recognize that anyone can develop an eating disorder. And weight is not the only factor to measure in terms of diagnosis and recovery.

Additionally, know that another misunderstanding about eating disorders is that the parent did something to cause it. You did not. No parent can cause an eating disorder. It’s going to make parenting even harder if you blame yourself. And I assure you that even if you made mistakes, you’re not to blame. Keep learning, and stay curious, but don’t blame yourself.

2. Low education: few people, from parents to educators and healthcare professionals, will have training in recognizing and treating eating disorders

Eating disorders are not rare, and yet there is little education and understanding about eating disorders. Part of the problem is that we have a social stigma against eating disorders, so we don’t talk about them. Medical doctors and therapists rarely receive adequate training in eating disorder diagnosis. A few hours is the norm. Teachers and coaches are seldom trained to recognize eating disorders.

This means that aside from very obvious symptoms (mainly low body weight), eating disorders can be easily missed.

Tips for Parents: Begin with yourself. Learn as much as you can about eating disorders in general and your child’s particular eating disorder. You may need to advocate for your child and protect them from biases. Some parents even say they need to fight to get their child diagnosed and treated.

For instance, you want to keep an eye out for athletic coaches who inadvertently dismiss and even encourage your child’s eating disorder behaviors. Also look for family members who encourage weight loss or food-shame. And know that therapists and doctors can miss eating disorders. All of these people mean well, but low education means that parents need to stay alert to possible mistakes.

Parents often find themselves trying to educate people about their child’s condition. This includes family members, teachers, coaches, and even healthcare providers. Parents often need to advocate for and defend their children even as they are still learning about eating disorders themselves. The lack of widespread education about eating disorders makes the diagnosis a lot harder for everyone.

3. Specialized care needed: eating disorders often require multiple care providers, including medical, psychological, and nutritional

Finally, eating disorders often require a team treatment approach. Your child may need a doctor, therapist, and dietitian. They may need to attend inpatient and/or outpatient care for a while. Unfortunately, eating disorders aren’t typically well reimbursed. Often the cost of paying for care falls on parents. This all adds up to a significant burden.

Tips for Parents: Your child needs specialized care. There are often limitations in terms of geography, access, and financial restraints. You may have to fight for insurance reimbursement. There’s not a lot of advice here other than do the best you can. If you’re able to find providers who specialize in eating disorders, that’s ideal. If at all possible, extend treatment for as long as possible. But my most important tip here is to have self-compassion for yourself. This part of care is really hard.

In other words, parents need to be vigilant with insurance providers and care providers. Unfortunately it’s necessary to work hard to ensure a child gets the best care possible. However, this comes at a cost. Parents’ emotional labor during a child’s eating disorder is significant. Therefore, consider how you can care for yourself and get care from others while you navigate your child’s disorder.

Getting help

The eating disorder diagnosis is often a problem because of the misunderstanding and stigma associated with it. It helps if you can learn about eating disorders and help your child recover. This takes effort. I hope you are able to counterbalance the work involved in supporting your child with support and care for yourself, too.

If your child has an eating disorder, you can help them recover. Parents can make a tremendous impact on recovery. So please get support to help you navigate this process. If at all possible, see a therapist or coach to help.

Books to help

These books can help you understand the eating disorder diagnosis a bit more.

Famished: Eating Disorders and Failed Care in America, by Rebecca J. Lester

An inside view of the complexities of eating disorder treatment.

Eating in the Light of the Moon: How Women Can Transform Their Relationship with Food Through Myths, Metaphors, and Storytelling, by Anita A. Johnston PhD.

Illuminating the nature of eating disorders.

Free eBook: What Kids Want Parents to Know About Eating Disorders


Ginny Jones is on a mission to empower parents to raise kids who are free from eating disorders and body hate.

She’s the editor of More-Love.org and a Parent Coach who helps parents handle their kids’ food and body issues.

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