With a mortality rate higher (upward of 20 percent) than any other mental illness, including depression, eating disorders should capture the attention of everyone. Sadly, they don't.
While you might be hard-pressed to find anyone unfamiliar with the HIV/AIDS awareness campaign, eating disorders are not a frontrunner for awareness, research, treatment and recovery dollars. Even though each year eating disorders affect 20 times more Americans than HIV/AIDS, for every $20,000 spent on HIV/AIDS research, only $1 is spent on eating disorder research.
This may be due in part to the commonly misunderstood and underestimated characteristics of the illness. While adolescent girls and fashion models are typically viewed as the poster children for eating disorders (particularly anorexia), in reality, they haven't cornered the market. Eating disorders are non-discriminatory, stealthily seeping through economic and cultural boundaries and nimbly leaping the borders of age and gender. It can take decades to reach any semblance of equilibrium, and while recovery is possible, the journey to get there can be excruciatingly long, arduous and fraught with setbacks.
Cheryl, now 50, has struggled with anorexia nervosa for 37 years. As a kid she "bounced from psych ward to psych ward" back when treatment hadn't reached the level of care that we know today. Along the way she had an abortion, lost her gallbladder, suffered three heart attacks, developed osteopenia and was hospitalized 33 times, all a direct result of the disease that until only recently refused to even slightly loosen its grip. Although she is in a relationship, holds a job, owns her own home and juggles other adult responsibilities, she continues to struggle, especially when she feels overwhelmed by those grown-up responsibilities.
It can be difficult, if not impossible to put an exact number on how many women struggle with mid-life eating disorders. Laura Discipio, executive director of the National Association of Anorexia Nervosa and Associated Disorders, says that it's important to remember that the ability to quantify figures can be challenging, particularly because individuals struggling with an eating disorder are often in denial about their illness, and hospitalizations frequently focus on the physical consequences of the disease, rather than the illness itself. And while a 2009 article in the International Journal of Eating Disorders highlights 20-year outcomes of bulimia nervosa and related "eating disorders not otherwise specified," it does offer some insight.
For this study, 654 women and men, 73 percent of whom had been assessed in 1982, completed a 20-year follow-up using questionnaires and structured clinical interviews. Although approximately 75 percent of women with bulimia nervosa were in remission at the 20-year follow-up mark, 4.5 percent reported a clinically significant eating disorder at midlife. The clinical applications portion of this study supports previous studies suggesting that when eating disorders are encountered in middle-aged women, it likely represents a long-standing illness that developed during adolescence and young adulthood.
Battling an eating disorder in midlife can pose significant challenges, the least of which may be attending group therapy with kids worried about going out for cheerleading. Fortunately, to address the increase in the numbers of older women seeking treatment, eating disorder facilities are beginning to develop counseling and treatment specifically geared toward this population's needs.
"Even though we do combine older and younger patients in group therapy, treatment needs to be developmentally appropriate, so we've created a separate track which focuses on issues unique to our older patients," says Adrienne Ressler, national training director for Renfrew Center Foundation and board president of the International Association of Eating Disorder Professionals.
An eating disorder isn't a means to attract attention. It's not something one can turn on and off at will. And it's not a disease that anyone would willingly choose. In fact, when the right combination of life and psychological factors are perfectly aligned, eating disorders actually seem to do the choosing themselves.
While many things can trigger eating disorder behavior, research shows that heredity and genetics can be strong predictors. One recent study in the Archives of Pediatrics and Adolescent Medicine reports that while maternal history of an eating disorder was unrelated to risk of binge eating or purging in older adolescent females, in girls younger than 14 years, those whose mothers had a history of an eating disorder were nearly three times more likely than their peers to purge at least weekly.
Yet while the Eating Disorders Coalition reports that 50 to 80 percent of eating disorder risk is genetically linked, genetics alone aren't destiny. Environmental factors, dieting, society's emphasis on appearance and idealization of thinness, and stressful, traumatic or disruptive life events are all triggers, especially in those with a genetic predisposition.
While anorexia and bulimia may have the dubious distinction of being the most well-known eating disorders, other eating disorders, complete with their own set of distinguishing characteristics and behaviors, are equally responsible for wreaking physical and emotional havoc.
A key characteristic of anorexia is the refusal to maintain a normal or above normal weight for height and age. While some people are naturally thin, their weight typically is not inordinately outside the healthy range. It's the insistence on maintaining a body weight of at least 15 percent (or more) below ideal body weight and refusing to gain that raises a red flag. Even with an impossibly low body weight, people who have anorexia feel an intense fear of gaining weight or becoming fat; a fear powerful enough to induce self-starvation.
While the term anorexia means "loss of appetite," people battling anorexia are anything but satiated. They think about food constantly, often reading cookbooks, collecting recipes or watching cooking shows; but they rarely prepare, let alone eat those recipes. They're obsessed with calories, total and types of fat grams and exercise. And because their distorted body image reinforces "I'm fat" thinking, they rigidly restrict and control their food. This can easily become a 24/7 obsession, leaving little time for social obligations, a job, family or friends.
While no one is immune to overeating on occasion (Thanksgiving is a perfect example), those who suffer from bulimia nervosa differ in that they consume a larger amount of food (often thousands of calories) than most people would within the same amount of time, typically, 2 hours or less. Even with intense feelings of physical and/or emotional distress, they feel incapable of stopping or controlling their eating. As a compensatory measure for the excess calories, and a way to "undo" their behavior, they purge.
Vomiting isn't the only method used; laxatives or diuretics and excessive exercise or starvation are also a means of purging. Bulimia can be difficult to identify; unlike anorexia, the person with bulimia may be normal, under or overweight.
Through the ingestion of a larger than normal amount of food in a relatively short period of time, binge eating disorder mimics bulimic behavior. However, people with this don't compensate by purging, excessive exercise or laxative use. Embarrassed by their behavior, people with binge eating disorder frequently eat alone. They consume large amounts of food even when they're not hungry and experience strong feelings of disgust, depression or guilt. According to the National Association of Anorexia Nervosa and Associated Disorders, about 30 percent of people in weight-loss programs meet diagnostic criteria for a binge eating disorder.
"Eating disorders not otherwise specified" is a category used to identify those who exhibit some but not all behavioral characteristics of anorexia, bulimia or binge eating disorder. For example, someone may experience binge/purge episodes, but not with the frequency (say more than twice a week for at least 3 months) associated with bulimic behavior.
Three criteria typically identify older women with eating disorders: women who have secretly struggled with an eating disorder for years without seeking treatment, women treated when they were younger for an eating disorder that has now reoccurred, and women who first develop an eating disorder as an adult.
Ressler points out that while longtime sufferers are dealing with a chronic disease that has continued through different life stages, first-time sufferers may be employing these behaviors to deal with divorce, death, relocation, empty nest syndrome, caretaking or a "magical" birthday. Additionally, older women must contend with the pull of gravity and the physical changes associated with perimenopause, menopause and beyond.
These life-changing events don't necessarily cause eating disorders, but they contribute to a "perfect storm" that may be difficult to avoid during a particularly vulnerable time. Cristy is a 47-year-old woman who has had "a full-blown eating disorder" for 10 years but experienced mild disorders since the age of 23. "It feels like I had a 'dormant'" eating disorder most of my life, and trauma brought it out in full force about 10 years ago."
Cheryl would agree. "I have met a lot of older women who have had an eating disorder their whole life. Some have had hospitalizations and therapy when they couldn't hide it any longer, while others have not gotten quite sick enough; they just live with it and manage it."
Women are particularly adept at employing denial as both a coping mechanism and a way to sidestep treatment, for instance, diverting their own and others' attention away from their eating disorder with the universally accepted idiom, "I'm just dieting." By putting the needs of everyone else first, it's easy to avoid taking the time away from family and other obligations to commit to the treatment necessary for recovery.
But the denial is hard to keep up. Health effects of an eating disorder include impaired mental functioning, endocrine system abnormalities, damage to the stomach, esophagus and gastrointestinal system, musculoskeletal and cardiovascular damage, tooth enamel erosion, gum disease and tooth loss. While these medical problems are serious for anyone, they are likely to be more life threatening in older women; aging bodies don't bounce back as quickly from any medical condition. Additionally, long-term assaults to all systems of the body can cause damage that no amount of medical and nutritional stabilization can reverse.
While medical effects are certainly cause for concern, the psychological destruction cannot be minimized. It's common for women to view and/or shape their identity through body image. When that image is negative, it can result in self-loathing that translates directly to behaviors that don't support healthy self-care and nurturing.
Ressler points out that after years of feeding negative, abusive messages to themselves, such as "I am disgusting" versus "I feel disgusting," women virtually become those messages. "The lens that women view their bodies through is very, very negative, and that only serves to reinforce the unattractive, unappealing feelings that women have about their bodies."
How does having an unhealthy relationship with food or their body, a full-blown eating disorder or a lack of strong coping skills affect the children, particularly daughters, of these women? A 2008 cohort study in the Journal of Developmental & Behavioral Pediatrics assessed the interaction between disturbed eating behavior and body mass index (BMI) in 426 children aged 8 to 12, and maternal eating problems and BMI. The results showed that older daughters of overweight mothers were more dissatisfied with their own bodies than younger daughters and children of normal weight mothers.
Perhaps more pointedly, results from a 2008 study in the International Journal of Eating Disorders suggest that in girls as well as boys, an association exists between the child's perception of maternal encouragement to be thin, body dissatisfaction and restrained eating.
According to Ressler, the potential effect on children, especially daughters, "is huge."
"It's so important to model healthy behaviors and positive self-image. Being obsessed with your image versus who you really are and what you feel can affect relationships because you're really never showing your true self."
Cristy is a mother of three, including a set of twins. "Of course, I am very concerned that my eating disorder will be harmful to my children. I think that by being open and honest in our conversations, we as a family are solid in the fact that what I do is a sickness, and that the healthy way would look much different than Mom's way. Actually, my daughters both love to eat, and are quite willing to be a bit curvier and eat the foods they love."
Perhaps one reason Cristy's daughters have such a healthy relationship with food is that her eating disorder is not the elephant in the room.
"In my family, for the most part, the topic of my eating disorder is open for discussion. My husband and college-age children are able to express their concerns, or point out when I am demonstrating eating disorder behavior. In the end, I know they have a great sense of love and respect for me, and that they see me as a wife and mother first. They don't just see me as a walking eating disorder."
Prevention is the key to avoiding many medical problems in the first place. Because an eating disorder is a medical condition, it begs the question; are eating disorders preventable?
Experts say yes.
Since many who suffer from these disorders report onset of illness by age 20, there is a need for early education, prevention programs, and information. Targeting both young girls AND boys, educating male coaches, physicians, and fathers about their role in supporting healthy body acceptance for girls, and working to shift our cultural emphasis away from appearance as a measuring stick, is a start. While awareness and education is critical at all ages, stress management and life balance techniques, with an emphasis on healthy lifestyles and the dangers of dieting are particularly appropriate for older women.
Ressler shares this edict, "Older women need role models of women who later in life are going strong or reinventing themselves, staying sexy, productive, and passionate."
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