What It Feels Like to Have an Eating Disorder—And How to Help a Girl Out

Reading a list of eating disorder symptoms is one thing, and that thing is best described as “clinical.” That’s because symptom lists come from the DSM, or Diagnostic and Statistical Manual of Mental Disorders, a guidebook that professionals must consult before bestowing a diagnosis.

Of course, actually experiencing symptoms of an eating disorder (ED) is far more intense than “noticeable fluctuations in weight” and “difficulties concentrating.” Living with an ED is filled with frustrating spells, hopeful moments, wavering emotions, and all variety of individual struggles.

If you’re wondering whether your habits may actually be an ED—it can be tough to know, say experts—or you’re trying to understand what’s happening with a friend or family member who has an ED, nuance is crucial. (Learn more in “The Gen XYZ Guide to Eating Disorders.”)

We compiled the stories of three women who spoke openly about what it’s like to have an eating disorder, along with expert takes on the ways an ED can harm not just health, but lives—plural.

Weight Loss Can Sneak Up on You

Krista Bennett DeMaio, 42, had anorexia, bulimia, and binge-eating disorder throughout college. “I struggled with body image from a young age, since I was 11 years old,” says the Huntington, New York, writer. 

She spent her high school years fad-dieting and drinking SlimFast. “I went to college with what I would consider a healthy weight, but in less than two months, I was down 20 pounds,” she says.

She believes the need for control drove her behavior, but at the same time, it sort of snuck up on her. “I didn’t even realize that I was eating less and less,” she says. Eventually, she started to crave the feeling she got from being hungry. After several months, her hair started falling out and she stopped getting her period. She also felt depressed.

It got to the point where DeMaio was eating so little, that it became a struggle to deprive her body as much as she wanted. That’s when began binging and purging, and also using laxatives at times because she hated making herself throw up. She made attempts at therapy, but it didn’t stick, and the behavior continued.

It wasn’t until she became pregnant at 30 that she started appreciating her body—a process that eventually inspired her trek to real, long-term change, even if recovery remains a lifelong process. “You can’t live without food the way you can live without cigarettes or alcohol,” she says. “It’s always going to be that sort of push and pull or that reminder, because you have to eat every day.”

When ED Steals Your Empathy

Like DeMaio, Caralena Peterson began fad-dieting in high school, which progressed to anorexia nervosa and bulimia during freshman year of college. She sought out help her junior year. 

Therapy was crucial for Peterson, a 30-year-old English teacher and writer based in New Orleans. “It was also realizing that this eating disorder was taking away my favorite parts about who I was,” she says. “It took away my empathy and my ability to be present.”

She’d also stopped hanging out with people, because being social meant being anxious. “A lot of bonding and true memories that we make in life happen around food,” she says. “When I had my eating disorder, I was often trying to avoid situations [with food], and that meant I was running away from situations with my family and friends where the relationships can grow and become stronger.” This is just one example of how an eating disorder’s effects extend beyond the physical. 

Family Dynamics and the Eating Disorder

Around age 19, Jess Scialdone began struggling with anorexia and bulimia. What drove her behavior: “I always felt like it was celebrated to be very, very thin,” says Scialdone, now 36 and working in tech sales in New York City. “Every time I ate something, I would go to the bathroom afterwards and throw it up.”

This continued until she was 30, when she started sharing her issues with family and friends and got help from a therapist who specializes in eating disorders. “When you seek that help and share your experience, you feel less isolated,” she says.

Opening up about her ED was especially transformative for Scialdone, because she’d been feeling so alone. “I did a very good job of hiding it, which of course is very isolating,” she says. “The best advice I could ever give somebody [with an eating disorder] is to try to bridge that gap between being on their own island and asking for help and connection.”

Common Behaviors and Red Flags

It’s hard to tell if someone has an eating disorder just by looking at them. Many people are masters at hiding their disorder, not to mention that EDs show up far beyond the way they’re stereotypically portrayed.

In fact, eating disorders are particularly under-diagnosed in people with larger bodies because even health professionals don’t fully understand the reality of EDs. Which is: They don’t discriminate by skin tone or body size.

That said, there are a few common red flags. Though EDs are rarely just about food—there’s usually an underlying need to  control one area of your life when other stuff is out of whack—an obsession with dieting or wanting to lose weight is probably the most classic sign of an eating disorder. This includes constantly going on about “clean” food.

They may also become fixated on their weight or shape, and we don’t mean an off-hand comment about looking chubby on Zoom. When you’ve got an ED, this is the kind of thing you bring up all the time. It’s like your brain has these thoughts on speed dial.

If, without fail, a pal excuses herself during or after every meal to use the bathroom—and stays there longer than normal—take a note. It could be nothing. It could be poop probs. Or they could be purging what they just ate, a symptom of bulimia. (By the way, gastrointestinal issues, such as constipation, can themselves be a sign of an eating disorder.) If your friend refuses to eat in front of you or anyone else and this has never been a thing before, take another note.

How’s your loved one’s mood? Are they exhibiting any of the above behaviors plus seem depressed or anxious? Do they have rock-bottom energy? Of course, these factors can be completely unrelated to EDs, but coupled with other behaviors, they can be telling indicators.

Eating Disorders Are a No Blame Game

Okay, you have a hunch something is up. Now what? Remember the ’90s movie Say Anything? Love it, but no saying anything here. During a conversation about your concerns, gently encourage them to seek professional help and remember to…

• Combine “I” statements with facts, says Debra Safer, M.D., an associate professor of psychiatry at Stanford University and the co-director of the Stanford Adult Eating and Weight Disorders Program. For example: “I’ve noticed that you’re not eating dinner with us anymore.”
• Avoid stigmatizing, blaming, or comparison, and encourage them to seek professional help.  

On that note, there are a few other things you should never say to someone with an ED. The below sentences can do more harm than you think, so we’ve also included more compassionate alternatives.

Don’t say: “Why are you doing this to yourself?” People who have EDs already feel crappy enough, physically and mentally. They are often ashamed, and they don’t need your judginess on top of it.

Instead, say: “I’m worried about you and here if you want to talk.” This statement expresses concern and support without judgment or criticism.

Don’t say: “What’s so hard about just eating more?” This is like telling someone with anxiety to “just calm down.” It’s overly simplistic and not helpful, says Elizabet Altunkara, LMSW, the director of education at the National Eating Disorders Association (NEDA). Offering “easy” solutions, especially when you aren’t super educated on the topic, can feel both pandering and insulting. For the record, changing eating disorder behavior is a complex process.

Instead, say: “I know you want to get better and that it’s hard. But I’m here for you.” Acknowledge that working through an eating disorder is hard. Change won’t happen overnight, and that’s okay.  

Don’t say: “Wow, you are looking really healthy lately!” Even if you mean it as a compliment, a person with an ED might misinterpret “healthy” for “fat.” This might make no sense to you, but when you’ve got an eating disorder, the jump seems logical, says Cynthia Bulik, Ph.D., the founding director of the UNC Center of Excellence for Eating Disorders and co-director at UNC Center for Psychiatric Genomics at the University of North Carolina at Chapel Hill. In fact, she adds, “avoid commenting on someone’s weight or physical appearance at all.” 

Instead, say: “It’s good to see you!” Bodily benign and unrelated to weight—that’s the way to go. Plus, says Dr. Bulik, it shows you appreciate their company.

Ripple Effects of an Eating Disorder

The effects of an eating disorder are like the swells of a wave, engulfing the people swimming around you—even if they don’t know you have an ED. “Eating disorders affect relationships, and relationships affect eating disorders,” says Dr. Bulik. “We have a couple-based treatment for eating disorders, and one of the partners summed it up best when they said, ‘There’s always a third person with us at the dinner table, in the car, even in bed. It’s me, her, and the eating disorder.’”

The same can happen with friendships. Socializing so often involves going out to dinner or grabbing drinks, and your ED wants no part of that—causing you to miss out on bonding in an attempt to avoid food. Even if you do go, you may be so preoccupied with what you are or aren’t eating that you can barely focus on your friends. This is tough, because the connection you get from pals is so clutch to both mental and physical health.

“Eating disorders are isolating illnesses,” says Altunkara. “The individual may withdraw from social activities and struggle with low self-esteem, as well as other mental health conditions, such as depression and anxiety.” An eating disorder can change your mood and behaviors, which can also impact friendships negatively. 

EDs can show up at work, too—and they’re not a helpful coworker. “An eating disorder can have a significant impact on a person’s ability to do their job,” Altunkara says. “It may affect the employee’s cognitive functioning and job performance.” You might have difficulty concentrating, or you may end up missing work due to health issues.

We don’t say any of this to shame or guilt—simply to inform. The more aware you are of what’s happening, with yourself or a loved one, the sooner you can do something. And it’s totally fine to start small. Behavior change is often built on baby steps that ladder up to meaningful action.