Sept. 5, 2019 -- Nevada mom Ashley says she became worried when her 10-year-old son, Jordon, started to restrict his snacks and excessively work out.
But even as he lost weight, she and her husband didn’t realize the extent or true cause of the problem.
Like all the parents quoted in this story, she asked that her last name not be used to protect her son’s privacy.
Ashley wasn’t the only one who failed to identify what was happening. Her husband thought their son was having a growth spurt. A nutritionist called it “a phase.” The emergency room doctor she sought out when she didn’t know where else to turn attributed his weight loss to being active and involved in sports. The ER doctor also said they needed to follow up with a pediatric oncologist to make sure Jordan didn’t have cancer.
“He basically told my son to add smoothies to his diet, and he jumped to cancer as a possibility,” Ashley says.
Ashley had to wait 3 weeks before a pediatric oncologist could see her son. But thankfully, he knew exactly what was going on. “He pulled my husband and I aside and said, ‘Your son doesn’t have cancer. He has an eating disorder.’”
“I look back at pictures now and think, how did we miss it? But we were around him all the time, and we saw him eating. We didn’t realize how much he was exercising though, and we just didn’t notice the drastic change at first,” she says. “An eating disorder didn’t come to mind because it��s just not well-known in boys.”
Eating Disorders in Men and Boys
Eating disorders are serious but treatable mental and physical illnesses that are classified as a formal psychiatric condition and include anorexia, bulimia, binge eating disorder, and more. Historically, and socially, these disorders are most commonly thought of as affecting women. But research shows not only that they happen regardless of gender, but also that they are likely underrepresented, under-diagnosed, and under-treated in men.
- The National Eating Disorders Association says 10 million males will be affected in their lifetimes.
- Men make up 15% of cases including anorexia nervosa, bulimia nervosa, and binge-eating disorder, recent research shows.
- A recent study says 22% of young men turn to dangerous means to bulk up muscle with disordered eating behaviors.
- Men with anorexia nervosa may face “harsher stigmatization from their peers or go undiagnosed” because of the stereotype that anorexia nervosa is a “female” disorder, a recent study found.
- A study this year highlights the stigma, shame, and isolation men often have that may impede and delay treatment.
- And a study published in May found that risk assessment tools for eating disorders likely reinforce gender stereotypes by better reflecting female symptoms.
"Because of stigma and stereotypes, males often have a harder time being diagnosed and receiving treatment for an eating disorder,” says Lauren Smolar, director of programs at the National Eating Disorders Association (NEDA).
Jeffrey Mechanick, MD, an endocrinologist at Mount Sinai Hospital in New York City, is trained in nutrition and metabolic support and has been called in on many cases of men who reached the point they needed to be nourished with an IV.
“Men with eating disorders do often get very sick because in general, they are not seeking out medical care or being identified as having a problem until much later in the natural history of the disease process, compared to women,” he says. “We are probably missing a lot of these patients.”
Mechanick published a series of case studies in 2016 that highlighted four male patients in their 20s. He wanted to offer real-world examples to better educate doctors on the many ways eating disorders can show up in men. One of the men had always been thin and a poor eater, but he suddenly began losing more weight. Another had been obese, and once he began losing weight, he didn’t stop. Another was taking a dietary supplement to build muscle.
“There are a lot of manifestations of eating disorders in men that just aren’t recognized. So when doctors see it in its early form in a boy who is eating but also exercising vigorously to the point of a compulsion to manage his weight, they are often ill-equipped in these situations, and many don’t even know where to send these patients for help.”
That happened to Lisa, who became concerned about an eating disorder when her 15-year-old son restricted his eating and exercised excessively. She says their pediatrician said her son wasn’t directing his energy in the right place and should join a sports team. Even when her teen was admitted to a local hospital with signs of anorexia and bulimia, she says no one referred them to an eating disorders specialist or brought in a psychologist to assess him -- even though that hospital had its own eating disorders clinic.
“I think gender could have played a part for sure,” says Lisa, who lives in Oregon. “Almost every parent that posts something on our eating disorders parent board starts by saying, ‘This is happening, but I’m not sure what it is.’ If something is concerning, keep an eye on it. Trust your gut, and keep pushing until you get answers.”
Lisa says her son has been hospitalized twice for his eating disorder. He's now back home, in school, and has maintained his weight for several months. But she says his diagnosis is still a challenge.
"I feel like we are in purgatory. We're not actively fighting weight loss, but I don’t know that he is recovered yet. He still has very regimented and restricted eating. I don’t think we are on the other side of the hump yet," Lisa says.
Some research also now suggests there may be differences in how eating disorders appear in men and women. Studies show that while women are more likely to have anorexia nervosa and bulimia nervosa, eating disorders in men most frequently involved binge eating. While self-induced vomiting and laxative abuse were typical among women, excessive exercising and fasting were more common in men. And while women with an eating disorder often also have mood disorders, in men, anxiety and psychotic disorders like schizophrenia were most frequent.
Other recent studies suggest there could be gender-specific issues in men including weight history, trauma, sexual abuse, gender orientation, depression, exercise and body image issues, chemical dependency, and media pressures, as well as body dissatisfaction and muscle dysmorphia -- the concern that one’s body isn’t muscular or lean enough. Studies show that men with eating disorders also are prone to excessive exercise, anxiety, depression, and substance disorders.
Research also has shown that a higher proportion of gay and bisexual men have eating disorders, compared with heterosexual men.
Non Wels, a mental health blogger and host of the “You, Me, Empathy” podcast, has written and spoken about his own eating disorder because, he says, he wants to bring more awareness to this issue.
He says that when he was 18, he stopped eating while dealing with severe family stress. He lost a life-threatening amount of weight and was so gaunt that he thought he needed a knee replacement because his bones ached and felt like they were rubbing against each other when he walked. His hair fell out. He was always cold. He felt exhausted all the time but couldn’t sleep. At his lowest point, he had suicidal thoughts. But he says realizing he had an eating disorder took a long time.
“When you are in the throes of anorexia, for me it was about control, and you will do anything to keep control. You see yourself in the mirror, but you don’t see the truth of the matter -- that you are dying. You overlook that to maintain the control,” Wels says.
He says he’d like to think he could buck gender norms but says they likely did make it harder for him to reach out for help. “Talking openly about these things would have gotten me ridiculed by my father,” Wels says. “I recognized in strangers and people I met that they were looking at me and seeing that I was struggling, but I don’t think anyone knew what to say.”
Finding the Right Treatment
NEDA stresses that eating disorders have the highest rate of mortality of all mental illnesses, and studies suggest that the risk of death for males with eating disorders is even higher than it is for women. Also, the longer an eating disorder isn’t treated, the more likely stronger treatment will be needed.
“Treatment is not one-size-fits-all, and should be tailored to the individual,” says Chelsea Kronengold, NEDA’s senior communications associate. She says that men and people who are non-binary, or don’t identify with either gender, may want to find a “treatment provider or center that takes a gender-sensitive approach.”
That can come in many forms. There are eating disorders treatment centers geared toward male patients and centers experienced in treating men. But many families say it can be a struggle to find one near you or that you can afford.
“The medicines involved are expensive. Insurance often doesn’t cover everything. There are wide system failures,” Mechanick says.
Lack of resources in general -- regardless of gender -- was a problem that Nevada mom Ashley had. The local eating disorders clinic in her town just recently closed. Even if it were still open, it wouldn’t have accepted her 10-year-old because it didn’t work with patients under the age of 14. So when the situation became life-threatening, she drove 4 hours from home to admit her son to a hospital with well-respected eating disorders experts.
He stayed for 11 days of treatment and was sent home and told to meet regularly with a therapist. Ashley says she and her husband didn't think they were equipped to provide all the help that her son still needed. They expressed that concern to the hospital but were told it would be OK.
“Those were the worst 2 months of our lives, trying to navigate this illness, and we eventually had no choice but to send him to a 2-month residential program in Denver,” Ashley says.
Jordan is now home, and Ashley says his weight has stabilized, but their family is still struggling. She says emotionally, there is still work to do for a full recovery, and they’ve been waiting weeks to get on the calendar with a local psychiatrist.
“I live in a town with half-a-million people, but I feel like we are suffering in silence. Anorexia has hijacked his brain, but it’s not what you expect to have these boys suffering from this. It’s very hard to talk about. People don’t understand,” she says. “I’m feeling very alone in my community.”
Resources are scarce in Vermont, where Kate lives, too. She struggled for 3 months to figure out exactly what was happening when she first noticed that her 11-year-old son stopped eating carbohydrates and was exercising excessively.
She eventually got a diagnosis of an eating disorder for her son and now has him on a meal plan, but she’s also waiting to see a local psychiatrist. She says it has been challenging to navigate the gender stereotypes.
“I’ve had some friends say it sounds like he is a 12- or 13-year-old girl. That is frustrating,” Kate says.
Lisa says her son was the only boy at the eating disorders clinic he was admitted to, and the only male in an outpatient support group after that as well. But she says as he continues to recover, she is starting to find more resources for men and boys. Still, she says, far more are needed.
“The books and literature are written for females, and help and treatment is so often aimed at girls. Everything says you will know they are on the right track when their period comes back. Well, what good does that do me? How am I supposed to know when my son is better? What markers like that can I look out for him? That answer is hard to come by.”
Officials with NEDA say they are trying to reduce these kinds of barriers through awareness campaigns, programs, and services. They have an online screening tool to help identify the disorder in people over the age of 13 as well as a national eating disorders helpline. For 24/7 crisis support, you can also text NEDA to 741-741.
But one study found that most men who do seek treatment have positive outcomes. Wels says he is proof of that. He says he struggled for about 10 years, but today, at the age of 38, he is in a happy and healthy place. He now speaks often about his journey in the hopes that it will help other men and boys struggling with eating disorders.
“It took 10 years to really work on it and struggle with it, but I have been 10 years sober -- that is how I look at it,” he says.
He says he couldn’t afford an in-patient program or treatment center but was helped by his mother. He moved in with her, and she created a meal plan and held him be accountable to eating. He also saw therapists and took medication to manage his depression.
“We have to break down the stigma and culture norms. This really should be more of a human thing than a gender thing,” Wels says.
He recommends learning what safety means to you and searching out safe people and spaces to help -- whether they are in the real world or online.
“There is no shame in sharing, embracing emotions, and talking about what you are struggling with. Reach out to people or some of the amazing groups and communities of people online who are there to listen and provide a safe, judgment-free zone,” Wels says. “When you can do that, recovery is 100% possible. I believe everyone can get there when they find the support they need.”