"What I wish people understood about eating disorders"

A new mom sheds her baby weight and is showered with compliments about how thin she looks. A young girl decides to “eat healthy,” a decision that makes her parents beam with pride. A teenage boy “drops a few pounds” after hitting the gym more consistently, and suddenly he’s become more popular. For many, such scenarios and reactions are typical. But for people battling an eating disorder, they mask a daily struggle.

Though often shrouded in secrecy, eating disorders are fairly common. This serious but treatable mental illness affects people of every age, sex, gender, race, ethnicity and socioeconomic group. According to the latest estimates, some 20 million women and 10 million men in America suffer from an eating disorder. Among the most common types are anorexia nervosa; bulimia nervosa; binge eating disorder; and OSFED (other specified feeding or eating disorder), which includes people who meet many but not all of the criteria for an eating disorder.

While it’s not clear what causes eating disorders, experts believe biological, psychological and sociocultural factors play a part. In other words, people are born genetically predisposed to developing an eating disorder, but environmental factors act as the tipping point. “Your genetics are a loaded gun and your environment pulls the trigger,” says Dr. Shelley Doumani-Semino, a psychiatrist and senior behavioral health medical director for Aetna.

Some common symptoms include:

• A preoccupation with weight or calories
• Food rituals
• Elimination of certain food groups
• Excessive exercise
• Dental and gastrointestinal issues
• Fatigue

“Eating disorders have periods of stability interspersed with periods of partial to complete recurrences of symptoms,” explains Dr. Doumani-Semino. But proper treatment can increase the chances of recovery. Check with your insurance provider to see what resources they may provide if you or a loved one needs help. Aetna members who have behavioral health benefits, for example, can receive support through the Behavioral Health Condition Management program.

Recovery can be a long process for the person suffering with the eating disorder — and for their friends and family. But as the following five people prove, having a healthy, balanced life is possible. Below are the stories of how they confronted their eating disorder and what they hope others can learn from their journeys.

“Full recovery is not just about food. It's about knowing how to cope with anxiety and manage perfectionism.”

― Jenni Schaefer, 42, Austin, TX

I remember being in dance class at 4 years old, looking at the wall-to-wall mirrors and already having a negative body image. As I got older, I heard on TV that sugary foods like cake were supposed to be fattening. So I wouldn’t eat cake at birthday parties. Once I hit puberty in middle school, I became a perfectionist and developed an obsessive compulsive disorder, both common among people with eating disorders.  

By high school, my food restriction turned into binge eating. But I was always a normal weight, so no one thought I had a problem. I was a straight-A student, class salutatorian, a member of the varsity choir. So many eating disorders stay hidden because of that [high level of achievement], which I write about in one of my books, Almost Anorexic.

When it came time to go to college, I was excited but super anxious. My new friends from college noticed the dramatic weight loss, saying, “You look great.” But in truth, I lost enough weight to be at less than 85 percent of the expected weight for my age and height. It’s what got me into the anorexia category. My parents saw how much my anxiety and perfectionism were causing pain and misery in my life. They started calling me at college. "Don't get straight A’s again," my dad would say.

I realized I had an eating disorder the last semester in college, because that was the first time I tried to make myself throw up. By the time I graduated from college, I was really sick. My life had been hijacked by the eating disorder, with every waking moment (and even my dreams at night) devoted toward meeting its impossible demands. I thought I could cure myself, but that never works. So I decided to finally get help. I called the National Eating Disorders Association (NEDA) helpline, and they sent me a list of resources in my area, including an eating disorder therapy group, a dietitian, an internist and a therapist. I ended up finding my psychiatrist through another woman in recovery.

What I learned is that full recovery is not just about food. It’s not just about the body. It's about knowing how to cope with anxiety and manage perfectionism. Today, I realize that perfection doesn’t exist, so I strive for excellence. Instead of beating myself up about mistakes, I embrace my perfectly imperfect life and do my best to learn from falls. Today, I’m an ambassador with NEDA. My life has come full circle. It feels like a miracle to me!

“I realized I needed to speak more publicly about having an eating disorder.”

― Adam Pope, 34, Minneapolis, MN

At the height of my eating disorder, I was exercising twice a day for two hours, eating a bare bones diet, taking a bottle of weight loss pills a week, not sleeping and struggling in school. My friends and family pushed me to get help.

Starting therapy made me recognize what was going on and how poorly I was treating my body. I would tell my therapist, " I'm going to try and eat two meals today. I'll have a hard-boiled egg and a piece of toast." My therapist would say that’s not enough, that I needed to try again. After a couple of weeks of that, she suggested I try in-patient treatment. I was in college, so I contacted my professors and said, "I'm going to need some time off." I was incredibly embarrassed. I didn't want to go to my instructors and say, "I have an eating disorder. I need time off from class."

I spent two months in-patient, then another month in partial hospitalization and outpatient after that. I was feeling better. I went back to college and moved in with my girlfriend. But two years later, I began slipping again. I don't know what triggered it, but I’d been going to the gym somewhat frequently, eating less and losing weight again over several months. I realized I couldn’t handle it alone, so I went back in in-patient treatment. I told myself it was a step forward, and these hiccups are part of the recovery process.

During treatment, we’d do outings once a week – go to a buffet, sit down in a restaurant, stop for coffee. One day, we were on the bus going to grab coffee and a snack. On the way there, one of the teenage girls in front of me says, "What's the plan?" The other one says, "I'm thinking we could say a ski accident or heart problem or dancing." They were brainstorming excuses to explain to people why they were in a wheelchair and why they had a nurse with them. It hit me like a ton of bricks: That's how I felt about talking to my instructors a couple of years before.

From that point on, if somebody asked me why I was in the hospital, I told them the truth: that I had an eating disorder. I realized I needed to speak more publicly about having an eating disorder so these girls wouldn't feel like they had to make up stories. Today, I see my therapist every other month to check in, and have a good relationship with exercise. I bike to work, and it’s like self-care for me. I pass a gorgeous lake, listen to music, and think about how good it feels to be out in the open air. I've also been working with the National Eating Disorder Association for quite a few years. I speak at colleges and schools, saying, “It’s common. You probably know someone with an eating disorder. Get help. It's nothing to be ashamed of.”

“I didn’t even realize I had once been bulimic until my daughter was treated for anorexia. I’d been in denial.” 

― Alexandra,* 44, California

My body dissatisfaction started in middle school. I started binge eating candy and noticing I was gaining weight, and then I consciously restricted. The summer right before college was the first time I had a bulimic episode. But I didn’t like the way it felt, so I stopped. Five or six years later I purged for about eight months. Purging can be addictive and I didn’t want it to ruin my life, so I stopped again.

Fast-forward 13 years, and my daughter’s in middle school. In January, she gets on this health kick. She starts making all of her own meals, not eating what we're eating. But then it gets progressively more odd. She's cutting food into microscopic pieces. She’s wearing warm clothes when it’s hot out because she’s so cold. By March, I got her a therapist. After one visit, the therapist told us our daughter was totally fine; it was just a diet gone bad. Three days later, my mother-in-law was visiting and told us our child looks sick. We took her to the pediatrician, and her heart rate was so low — down to 41 bpm — that she was at risk of cardiac arrest. She was hospitalized for 10 days that April. As a parent, it was so frightening because you realize your kid was at the precipice of dying, and no one else saw it.

When I started reading up on eating disorders, I learned about the genetic component. I didn't understand that my bulimia was a serious enough condition that I needed to share with my doctor or my daughter's doctors when they inquired about a history of eating disorders. The fact that she was hospitalized was a wake-up call for everyone, me included. I didn’t even realize I had once been bulimic until my daughter was treated for anorexia. I’d been in denial. I thought it was a bad judgment call in my youth, not a serious disorder that could one day affect my kids. Even though I am fully recovered, I went to a psychiatrist for the first time, and it’s helping a lot.

*Name has been changed

“What really haunts me is how easily and quickly it started for me.”

― Dana Talusani, 49, Longmont, CO

It was my 14th birthday. I had been skiing and I had injured my knee and was on crutches. We were out for my birthday dinner, and I ordered my favorite thing ever: fried shrimp. My older sister looked across the table at me and said, "You're on crutches, so you’d better watch what you eat because you're going to get fat." I went into the bathroom and threw up my dinner. It's weird that one little moment in time can derail your life for 10 years, but that's pretty much what happened to me.

I threw up for about a year after that dinner, but the whole process became too complicated. Trying to find a place where I could go throw up, where I wouldn't be caught. I decided it would be easier to either not eat or exercise a lot. At my worst, I was running 15, 20 miles a day. It was fairly easy to disguise it — until I couldn't. I was definitely too thin. My mom became mildly alarmed and would make me weigh in every week. I went to therapy every week in high school.

My eating disorder got worse in college, because I wasn’t under my mom’s watchful eye. In grad school, I remember waking up one day and saying to myself, "Are you really going to keep doing this for the rest of your life?" It started so abruptly, and it sort of ended fairly abruptly as well.

Now that I have two daughters, I feel such a responsibility to make them feel like their bodies are beautiful no matter what. I was raised in a family where you're expected to show up, shut up and do your job, which was to get good grades and look perfect on the outside. We try to emphasize with our girls that we value what’s on the inside.

“I don't think many people realize that with eating disorders, a lot of it is about feeling a sense of control.”

― Megan, 35, Connecticut

Thinness is very praised in my world. I had an early puberty, at age 11, and at the same time my parents went through a dramatic divorce. I coped with both of those things by eating a lot of food, but then also purging because I wanted to be smaller. When I was 17, I started teaching fitness classes. I would finish school, teach a kickboxing or weight training class, come home and binge on whatever — like half a pack of Oreos — and then just make myself throw it up because I felt guilty. I saw a therapist in college after my sorority sisters intervened. After a few months of therapy, I realized there were healthier ways to eat and have a better relationship with food.

And then I had twin boys at 29. My body changed after, and I wasn’t happy with it. Plus, there was the stress of caring for them. I would find myself grabbing an entire gallon of ice cream, an entire bag of potato chips, and eating to the point where I wasn't even aware of what I was eating anymore. I think I reached for that food because it made me feel like I was back in control again. It continued for about a year until one day I realized I was binging again and hadn’t even realized it. With my therapist’s help, I’ve learned how to recognize my triggers and find a healthier way to manage them. Now, when I want food outside of meal time, I pause and ask myself, “Will eating this make me feel better? Will it solve what’s upsetting or stressing me?” Or I'll do something mindless, like walking a familiar route, knitting or even coloring. Oftentimes, that's enough to make me realize I'm not actually hungry. I'm just stressed and looking for an outlet.

If you or someone you love is concerned about an eating disorder, speak with your doctor or schedule an appointment with a mental health provider as soon as possible. Treatment is available. Below are some additional resources.

• Learn more about the warning signs.
• Call the National Eating Disorders Association Helpline at 1-800-931-2237 for free, confidential support.
• Aetna members can use their online provider directory to find a mental health provider in their area.
• Call 911 for emergencies.