Eating disorders are perceived as disorders in which the person suffering wastes away and becomes skeletal in appearance. It is true that a rare minority of people who have eating disorders begin at a relatively low body weight and, upon engaging in disordered eating, rapidly lose more weight and become medically underweight.
These people often need urgent medical care so they can regain weight to recover baseline metabolic and brain function. These cases are very, very serious. If your child lives in a smaller body and loses weight (this can happen in as little as a few weeks), seek immediate medical attention. Your child will most likely need to recover a baseline weight before they can obtain the psychological treatment necessary for the eating disorder.
But the vast majority of people who have an eating disorder never hit this point of medical emergency. Most of us begin in medium- to large-sized bodies, and if we do lose a significant amount of weight, it is typically applauded and called “healthy.” A lot of us will never lose noticeable amounts of weight, and many of us even gain weight on our eating disorder.
It’s important to understand that eating disorders are not weight disorders, they are mental disorders. You wouldn’t judge a person’s level of Attention Deficit Disorder or Autism Spectrum Disorder based on the size of their body or any appearance-based judgment. A person’s mental health status cannot be assessed based on their weight.
Many of us suffer needlessly for years – even decades – because nobody can see that we have an eating disorder. Worse, because of diet culture, many of our disordered eating behaviors are encouraged, congratulated and praised.
Many of us have been asked for our “secrets” and “tips” to staying so fit and healthy, when in fact we are suffering from an eating disorder. Many others will be criticized for our weight and told to engage in disordered eating behaviors instead of treated for our mental disorder.
An invisible illness is a term used for any medical condition that isn’t visible. The category includes chronic physical illnesses including diabetes and arthritis, and mental illnesses such as depression, anxiety, and eating disorders.
The problem is that unlike the other invisible disorders, eating disorders have been presented as if they do have a specific “look,” and this leads millions of people to remain undiagnosed and/or undertreated for the single most deadly mental illness.
Those of us who live with invisible illnesses, particularly eating disorders, are often untreated and undertreated. People frequently think we are “making up” our symptoms and downplay our level of suffering. Most of us have been told some version of “snap out of it,” “it’s not a big deal,” “just get over it,” and are told we just need to lose weight, gain weight, eat more, eat less, cheer up, calm down, make more friends, and other dismissive comments.
Additionally, eating disorders, like most mental disorders, tend to come and go in terms of severity. We may have days, weeks, and months at a time during which we have only minimal symptoms. These periods of natural remission can fool us and those who love us into thinking we have recovered. But many times we are still disordered, just less sick at the moment.
All of this can make it hard to parent a child who has an eating disorder. We often don’t really know what we are looking for or how we will know our child is sick. Here are some guidelines for knowing whether your child is “sick enough” to begin or continue treatment for an eating disorder:
1. If your child has not yet been diagnosed with an eating disorder:
- Do not use weight as the way you measure whether your child is sick enough. Except in the rarest of cases, weight is never a good measurement of eating disorder status. Don’t use weight status as the way you determine whether your child needs treatment. Look instead for behaviors and don’t be afraid to trust your instincts. Many times parents “sense” rather than “see” disorders.
- Do not rely on medical tests to diagnose an eating disorder. Most of us who have eating disorders will not have easily-visible medical complications. This means that the standard measures of health, such as blood tests, x-rays, etc., will not help diagnose an eating disorder. There are a few specially-trained medical doctors who have found some use in medical tests, but, in general, medical testing will not produce a diagnosis.
- Do not accept healthcare professionals who dismiss the eating disorder. Many of us have been taken to a doctor only to be told that we seem “normal.” But because of the unfortunate weight bias that plagues eating disorders, and because we live in a weight-stigmatizing culture, parents must pursue diagnosis even if a doctor does not believe there is a problem. Seek a psychotherapist who has been trained and certified in eating disorders – they are the only people who are qualified to diagnose an eating disorder. Look for one of the following professional certifications: Certified Eating Disorders Specialist (CEDS) for therapists and physicians, Certified Eating Disorders Registered Dietitian (CEDRD), or Certified Eating Disorders Registered Nurse (CEDRN).
- Do not accept your child’s assertion that they are “fine.” Eating disorders do not like to be exposed. If we don’t feel ready to face our disorders, we will do almost anything avoid treatment. It takes respect and patience to get us to open up about what’s really going on. If you suspect there is a problem, don’t ask your child and take their answer at face value. Even the most wonderful, truthful people will lie about their eating disorders. Seek a certified professional who understands eating disorders to get a diagnosis you can trust.
- Keep a journal of your concerns. It can be tremendously helpful for parents to keep a journal of behaviors and concerns they have regarding their child’s mental health. Some behaviors you can take note of include: quantity of food eaten in front of you and in secret, knowledge and suspicions of purge behavior, exercise behavior (public and secret), fear of eating in public, social event avoidance, listlessness and lack of interest in formerly enjoyable activities, self-harm behaviors, depressive and anxious symptoms, sleep patterns, etc.
2. If your child has already been diagnosed with an eating disorder:
- Do not use weight as a measurement of recovery from the eating disorder. Weight can only tell you if your child has recovered from being medically underweight. It cannot tell you whether your child has recovered from their eating disorder.
- Do not stop treatment because your child says they are better. Eating disorders are very tricky and tend to go underground when threatened. Respectfully question your child’s assertion that they are recovered and insist upon ongoing therapy. Consult with your child’s treatment team and, if they agree, you may be able to decrease therapy to every other week, but try to avoid cutting off all therapy. There are very good reasons to maintain therapy even after the eating disorder has gone into remission.
- Stay on the lookout for related disorders. Eating disorders rarely occur in isolation. Most often, our eating disorder is the “presenting problem” that lies on top of underlying mental disorders. Most of us have depression, anxiety, and sometimes underlying trauma. This is why you want to keep your child in therapy even after they have recovered from the eating disorder. Unless these underlying conditions are treated on an ongoing basis, the eating disorder may come back.
- Stay on the lookout for related behaviors. Eating disorders are considered behavioral addictions. It is frequently observed that one behavioral addiction will shape-shift into a new behavioral addiction. This means that we may no longer have an eating disorder but now engage in alcohol and substance abuse, self-harm, compulsive shopping, compulsive sexual activity, compulsive gaming, and many other behavioral addictions that serve the same purpose our eating disorder was serving. Parents should be vigilant about watching for these related behaviors.
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.