Inside The Hidden World Of Adult Eating Disorders

It's not only teens who get sick, and it's time we start talking about that.

22/12/2015 1:11 AM AEDT | Updated 22/12/2015 5:14 AM AEDT
Illustration by Troy Dunham
When adults develop eating disorders, they may struggle with the shame of having a disease associated with teens.

Toni Saiber was going through a divorce when her soon-to-be ex-husband made a passing comment about her weight.

The jab stung and reverberated in her head: She was 30, about to be back out on the dating market, and felt particularly vulnerable. She wasn’t overweight, she knew that, but there was certainly room for improvement. Saiber, a successful interior designer in Denver, liked things to be perfect. 

Once she stopped eating much of anything after 4 p.m. -- a tip from the diet program she enrolled in -- the first 10 pounds fell off. She was good at achieving tasks she set out for herself, and restricting her food intake was no exception.

But at some point, during the calorie counting, meticulous planning and obsessing about the food she was and wasn’t going to allow herself to eat that day, something clicked. Soon, it wasn’t enough to weigh herself once a day. She was compelled to check in the morning and in the afternoon and before bed.

"If I didn't gain anything or better yet, lost even an eighth of a pound, I would be in a great mood,” Saiber said in a recent interview with The Huffington Post. “If I gained, I would be very irritable.” She didn’t trust her bathroom scale to be accurate, so she went out and bought a medical-grade doctor’s scale. And so began her over two-decade-long struggle with anorexia.

Eating disorders are typically ascribed to the young: in particular, female teenagers. But experts say that portrayal is inaccurate. Adults develop eating disorders too, some much later in life. Because of the lingering stereotypes about who gets sick, they can face lower rates of diagnosis, unique medical complications and limited treatment options, as well as the stigma that comes with having a disease associated with teens.

Cynthia Bulik, the director of an eating disorders program at the University of North Carolina, said that when their program launched in 2003, she expected to see mostly adolescents.

But within five years of opening, almost half their patients were over the age of 30. “This has been mirrored across the country,” she said. “We are seeing both women and men in midlife and beyond who are presenting for treatment.”

Curious about what she was seeing in the clinic, Bulik began to do some research. In 2012, she published a study, which found that 13 percent of women aged 50 and older exhibited symptoms of eating disorders. 

From a medical perspective, that's a serious concern.

Bulik explained that older patients can have more severe medical complications, including issues of the heart, reproductive system and teeth, simply because their bodies are less robust.

"Pretty much every system is being affected," she said. 

Triggers in the body

Margo Maine, a clinical psychologist who treats patients at her practice in West Hartford, Connecticut, said adults with eating disorders typically fall into three categories: those who have struggled with disordered eating since adolescence, but don’t develop a full-blown eating disorder until later in adulthood, those who may have successfully been treated for an eating disorder as a kid but relapse as an adult, and those, like Saiber, who develop eating issues for the first time as an older person.

“We’ve paid too much attention to the challenges of young people when it comes to body image, and managing self-esteem and a healthy relationship to food, and we’ve really ignored what happens as women get older,” Maine said. “Later adulthood is a ripe time for an eating disorder to develop.”

Times of big biological change, such as a pregnancy or menopause, put women at heightened risk, she explained. The natural signs of aging, like wrinkles, reduced muscle tone, gray hair and added weight around the midsection may be especially troubling to some people.

Later adulthood is a ripe time for an eating disorder to develop. Margo Maine, clinical psychologist

Developmental life events, which raise questions about one’s identity, such as divorce, as in Saiber’s situation, retirement or even becoming a grandparent, can also serve as triggers.

“When we are questioning our identity as women, a big part of that is our weight and body image,” she said. “Weight loss or controlling our bodies in some way might become a real focus during those transitions, without us even knowing we are turning toward it because of stress.”

No one asks, no one knows

Experts say one of the biggest issues in adult eating disorders is low rates of identification. Saiber, who is 5 feet 7 inches tall and weighed less 95 pounds for two decades, experienced that very phenomenon.

She said that throughout her struggle with anorexia, not a single medical professional asked her about her low weight or whether or not she had an eating disorder.

There was certainly opportunity. She had annual check ups with her OBGYN, who never said a word. Then there was the surgeon who operated on her after she broke two bones in a gentle fall while skiing. The surgeon said her bones were unusually soft for her age, and recommended she get a bone density scan, but didn’t mention her weight.

The misconception that eating disorders only happen in adolescence has done a huge disservice to detection and treatment of people in midlife. Cynthia Bulik, eating disorder specialist

"I don’t think it’s because they don’t care. I think they care very much," Saiber said, reflecting on why her doctors never talked to her about her weight. "I just think they’ve never been educated. They don't know how to broach it and they don't want to do more harm than good."

Bulik said Saiber’s experience is relatively common.

“The misconception that eating disorders only happen in adolescence has done a huge disservice to detection and treatment of people in midlife,” Bulik said. "I’ve had situations where older women and older men tell me they’ve gone to their primary care provider and said 'I think I have anorexia or bulimia', and their physician has said, 'You can’t have that, that’s a kid disease.'"

Maine points to another factor: The war on obesity.

"Everybody, even very knowledgeable health care professionals think that being thin is really important and weight loss is very important," she said. "Doctors will say, I just don't want you to gain weight. I just don’t want you to gain weight, when in fact, weight is a much more complex story for all of us."

She recounted a story of one patient who was suffering from bulimia and lost 20 pounds over a year. The woman finally worked up the courage to tell her OBGYN so she could get help. But before she got the chance, her doctor began the appointment by commenting on her weight loss and then asking her how her husband was enjoying her new body.

Leslie Sim, the clinical director of the Mayo Eating Disorders program, said that primary care physicians are in a unique position to identify eating disorders, but often don’t.

“Providers might be uncomfortable asking about eating disorders for fear that it might offend someone, or assume that people are reluctant to talk about their eating," she said. "It's not on a lot of people's radar, and unfortunately they tend to look for other medical reasons for unexplained weight loss."

Letting go of the secret

Saiber kept her eating disorder to herself for almost 20 years. She remarried in 1987, but she never told her husband about her anorexia.

“Of course, there was so much shame, I would never have shared it with him,” she said. “I kept it secret from everyone.”

They tried to have a baby when she was 37, which was difficult as her periods were irregular. After seeking out fertility experts, Saiber finally got pregnant but miscarried at nine weeks, which she accounts to her low weight.  

It wasn’t until 15 years later, when she was 52, that she was no longer able to keep up the exhausting ruse.

I realized not only was I very close to death, but I was hurting the people I loved the most. Toni Saiber

Suffering from what she thought was a stubborn cold, Saiber was eventually admitted to the hospital, where she fell into a coma for eight days. She was in such a state of malnutrition that hospital staff commented that they had only witnessed her condition in third world countries.

Seeing her family and friends standing vigil by her hospital bed was her turning point, Saiber said.

"An eating disorder is such an introverted, inward illness. It was this wall between me and everyone," she said. "I realized not only was I very close to death, but I was hurting the people I loved the most."

After she stabilized, Saiber had to travel out of state to Iowa City for treatment, as Denver did not have an inpatient unit for eating disorder patients over the age of 21.

It’s been almost 13 years since her lowest point, and Saiber is grateful to be alive. She helps run The Eating Disorder Foundation, a nonprofit in Denver that provides support services for people suffering from eating disorders and their families. She tells her story to convince others it is possible -- and worth it -- to get better.

“An eating disorder takes up almost all your time and all your energy, from the moment you wake up until the moment you go to sleep,” she said. “When your eating disorder behaviors are no longer there, it allows for all of this other stuff to come into your life.”

Need help? Call the National Eating Disorder Association hotline at 1-800-931-2237 or visit their website.

If you developed an eating disorder in adulthood and want to share your story, email reporter Melissa Jeltsen.