When Equip Peer Mentor Rachel Myers decided to seek treatment for her eating disorder, she was confronted by an all-too-common response: “You don’t look like you have an eating disorder.” Myers says that because she did not present as extremely thin or meet the body mass index (BMI) criteria to be considered “underweight,” medical professionals brushed off her mental illness and disregarded the damage her disorder was causing.

Myers’ experience is not at all uncommon. Even though there has been increasing awareness around “atypical anorexia,” a diagnosis for people who exhibit all the symptoms of anorexia but without the classification of being underweight, countless people go undiagnosed because of false assumptions around what eating disorders look like.

In reality, fewer than 6% of people with eating disorders are medically diagnosed as “underweight,” but despite that statistic, individuals in larger bodies are half as likely to be diagnosed with an eating disorder than “normal weight” or “underweight” individuals. What’s more, eating disorders wreak havoc on a person’s physical and mental health regardless of their weight; the eating disorder is not less serious because a patient’s weight is higher.

So why are so many people slipping through the cracks, and why does the medical community—and society at large—still seem to think individuals have to reach a specific, arbitrarily defined level of “sickness” in order to receive help for their eating disorders?

Why so many people don’t get the help they need

It’s clear that the diagnostic criteria historically used to define eating disorders and decide who gets treatment is part of the problem. But what other factors contribute to the mythology around being “sick enough” to receive help and be taken seriously? Is it a lack of accurate media representations? Social stigma? Fatphobia? Experts believe it’s all of the above, and more.

Myers, for her part, believes that fatphobia is at the root of many misconceptions around eating disorders. “Society believes that if you’re fat, then you can’t possibly have an eating disorder,” she says. “This is something I was told by multiple doctors throughout my lifetime. I convinced myself that this was true, because all of the media depictions of eating disorders in general showed only a certain body type.”

“I absolutely think media depictions of eating disorders are partially to blame,” agrees Equip therapist Ashley Isenhower, AMFT. “We almost always see anorexia characterized by extremely thin, white, affluent, cisgender females. Meanwhile, we almost always see binge eating disorder characterized by people in larger bodies.”

Equip registered dietitian Dani Castellano says the tendency to measure yourself against others—both physically and mentally—can also contribute to a person’s denial of their own eating disorder. “Comparison can be a big part of eating disorders and a huge maintaining mechanism of them is the belief that things aren't ‘bad enough’ or ‘could be worse,’” she says. “I’ve seen that thought process get in the way of taking steps toward recovery for people who need treatment.”

There’s also the fact that it can be hard for people to admit the severity of their suffering when the culture they live in constantly reinforces and rewards the very behaviors that are hurting them. “The diet culture we live in glorifies disordered eating and exercise patterns every day, and depending on body size, that gets in the way of seeming ‘sick enough,’” says Castellano. Myers experienced this herself, explaining that “dieting is so validated within our society that for a long time, I was convinced I didn’t have a problem because most people I knew tried dieting in one form or another, and it was labeled as ‘wellness.’”

Who actually deserves help for an eating disorder?

The short answer to the question above is everyone. But when it comes to deciding if you or a loved one is “sick enough” to merit treatment, it can be tricky to tease out the true psychological symptoms of an eating disorder from the outdated diagnostic criteria that so many medical institutions and care facilities still lean on.

“If you're questioning if you're ‘sick enough’ or if your family member is ‘sick enough,’ I would recommend you reach out for help,” Castellano says. “Equip's website has a wonderful checklist of signs to look out for in determining if someone is struggling with an eating disorder. Early intervention is crucial and anytime thoughts about food, body, or exercise are getting in the way of living life, there is room for healing.”

It’s also important to understand that eating disorders have serious health consequences regardless of a person’s weight. People of any weight who engage in eating disorder behaviors can experience significant, potentially life-threatening health problems, such as heart irregularities (including heart failure), electrolyte imbalances, severe dehydration, digestive problems, and psychiatric issues like anxiety and depression, among other complications.

Isenhower believes that by asking a few key questions, you can learn far more about your own or you loved one’s need for intervention than you could by looking at any single number or diagnostic marker:

• How much time do you or your loved one spend fixating on food, calories, or exercise?
• How much is this “diet” or “lifestyle choice” affecting you or your loved one’s ability to make/sustain friendships or relate to family members at home?
• Are food/exercise/body concerns negatively affecting you or your loved one at school or work?
• How much distress are food/exercise/body concerns causing you or your loved one?

“Someone’s mental state is a more accurate way to determine someone’s need for treatment than their weight,” Myers says. “It’s important to be aware of your relationship with food, your body, and movement. If you feel the need to constantly manipulate your body size or diet, this could be an indicator that you’re in need of eating disorder treatment. Body size alone should not be a prerequisite for whether you’re worthy of treatment, because catching eating disorders early is key to preventing them from getting worse. It is never too soon to start reflecting on your relationship with food, especially if you're making drastic changes to your diet or starting to have ritualistic behaviors around food.”

What to do if a medical professional dismisses a patient in need

With so many people routinely experiencing the same disregard for their symptoms that Myers did, it’s imperative that individuals and families know when and how to advocate for themselves. When Isenhower encountered harmful dismissal upon seeking treatment for her bulimia, she had to do just that.

“I was very engaged in my disorder and attempting to check myself into treatment so I needed my primary care provider to order labs and check my vitals,” she says. “She looked at me, looked at my chart, and exclaimed ‘Oh wow—you’ve lost quite a bit of weight. Good job!’”

Luckily, when Isenhower relayed the story to her therapist, she was reminded of the instinct she’d had that something was not right about the way she was living. She ignored her doctor’s comments and continued on to treatment. “So I'd say: trust your gut,” she says. “Doctors don't have adequate training in eating disorders but you are the expert on yourself or your child. You've seen the light disappear behind their eyes and you've watched them struggle with food and body image.”

Castellano believes that the attitudes behind Myers’ and Isenhower’s experiences create a huge barrier to equitable treatment. Her advice to people who find themselves in these situations, which she calls “infuriating” and “unjust,” is this: “Take a moment and breathe, know that you are not alone and this doesn't mean that you cannot get help. Do not give up, but know that it can be difficult to find providers who get it. Equip is of course an amazing resource and place to seek treatment for families. The National Alliance for Eating Disorders also has extensive resources and search tools to help you connect with experienced practitioners.”

Having navigated this road herself, Myers also has some guidance for those who have been met with misinformation or ignorance in their pursuit of treatment. “Families and patients should feel comfortable finding eating disorder-specific clinicians such as dietitians, therapists, or treatment centers,” she says. “It can be helpful to look up phrases like ‘eating disorder-informed,’ ‘HAES (health at every size),’ and ‘intuitive eating.’ I’ve learned over the years of visiting my primary care doctor that it’s okay to ask for more specialized help, and it isn’t always going to come from your medical doctor.”

Isenhower also offers some wisdom from her own personal and professional experience. “Hitting ‘rock bottom’ in eating disorder recovery simply means you don’t want to get yourself in any deeper,” she says. “You can always go further, get sicker, get smaller—but you don't have to. You can simply choose to stop digging.”