Midlife Eating Disorders: Your Journey to Recovery

This book is dedicated to my patients. I have learned more from you than any book could ever teach me. Thanks for placing your trust in me and allowing me to accompany you on your recovery journeys. Your personal stories continue to enrich my understanding of these disorders, inform my research, and inspire me to work toward better understanding, prevention, and cure.

Contents

Introduction: Erase All Stereotypes

Part 1:   The Facts About Midlife Eating Disorders

Chapter 1:   A Culture of Discontent: Why Midlife and Why Now?

Chapter 2:   Defining the Disorders: What Are These Eating and Feeding Disorders?

Chapter 3:   What’s Different About Midlife Eating Disorders?

Chapter 4:   The Face of Eating Disorders in Men

Chapter 5:   The Changing Context of Eating Disorders

Chapter 6:   Genes and Environment at Any Age

Part 2:   Unique Challenges of Eating Disorders in Midlife

Chapter 7:   Partners Suffer

Chapter 8:   Pregnancy, Childbirth, and Eating Disorders

Chapter 9:   Parenting with an Eating Disorder

Part 3:   Your Journey to Recovery

Chapter 10:  Motivators for Recovery

Chapter 11:  Finding Compassionate Care

Chapter 12:  It’s Not a Life Sentence, and Recovery Is Not Solitary Confinement

Acknowledgments

Resources

Notes

A Note on the Author

DISCLAIMER

All matters regarding your health require medical supervision. This book draws on my decades of experience as a psychologist and director of eating disorders treatment and research programs. It is neither intended nor designed to replace the opinions of your health care professional.

I have used my own clinical experience and have incorporated the personal stories of many patients, partners, and health care providers into this book. To protect their privacy, I have used pseudonyms and, in some cases, for clarity or caution, combined experiences or commentaries into one character. Some of the vignettes and quotes in this book may be disturbing, but they reflect the reality of midlife eating disorders. The take-home message remains that recovery or, at minimum, improved quality of life is possible at any age. There is hope.

Introduction:

Erase All Stereotypes

When someone says eating disorder, what image do you conjure up? Chances are if you are like most people, you imagine a thin white upper-middle-class teenage girl. Surprisingly, you couldn’t be more wrong. Whatever preconceived notions you may have about who suffers from eating disorders, it’s time to erase them and start over. Granted, anorexia nervosa is more visible than other eating disorders; those afflicted are strikingly underweight, may look pale, and may have other signs of the disorder such as dry skin and brittle hair. Pictures of someone with anorexia are shocking and attention-grabbing. The media love anything with a provoking visual hook. That’s why we are much more likely to read stories about anorexia in newspapers and magazines than stories about the less visual eating disorders such as bulimia nervosa or binge eating disorder (BED). Plus, people are more aware of the lethality of anorexia nervosa, and the media are always hot on the trail of any story about a celeb who dies, be it from anorexia nervosa, drug or alcohol abuse, or suicide. Most people are less aware that other eating disorders also carry a death toll. The landscape of eating disorders has changed and we have to update our understanding of what they are and who they afflict.

If we look at the numbers, the most common profile of someone with an eating disorder is a woman in her thirties or forties who struggles with weight control and suffers from BED. But countless women and men in midlife and beyond from all racial, ethnic, and socioeconomic backgrounds wake up each morning to an ongoing battle with eating and body image, with many suffering from anorexia nervosa, bulimia nervosa, purging disorder, BED, and night eating syndrome. Millions more lurk below the diagnostic radar with enough disordered eating to disrupt their lives, but not to receive an official diagnosis.

On the surface, eating disorders play out similarly in adults and teens, but the context and the impact on their own and their families’ lives differs enormously. Some adults with eating and body-image-related disorders live productive lives and carry their illness around with them like a hidden secret. For others, eating disorders remove them from the playing field of life, impairing their ability to work, reproduce, and love.

In the medical field, typecasting eating disorders as teen disorders poses dangerous challenges for adult women and men seeking compassionate care. Primary care physicians, obgyns, and other health care providers may overlook these disorders in adults or, even worse, demean women for not having grown out of these adolescent problems or ridicule men for having a girls’ disorder.

Partners and children suffer when adult women and men are afflicted. The cost of treatment renders families destitute and destroys relationships. Intimacy is crushed by body image concerns. Trust in relationships is shattered as women and men desperately try to hide their illness from others.

The treatments that we currently use were developed primarily for adolescent girls. We are only now starting to tailor treatments to deal with the specific challenges faced by adult women and men: how to recover when you have to work, engaging partners in recovery, developing parenting skills, and protecting the next generation.

It feels as if the landscape has changed abruptly, and our understanding and compassion have lagged dangerously behind. This book will help adults understand Why me? and Why now? and guide them in designing their own recovery. It will also give them renewed hope by identifying the best in evidence-informed age-appropriate care and resources available in the community for themselves, their loved ones, and their caregivers. It will help partners and family members understand these perplexing illnesses, develop compassion for those who suffer, and encourage self-care. Finally, it will help professionals appreciate the nuances associated with detecting and treating midlife eating disorders. After reading this book, the reader should not only have a better understanding of the causes and nature of adult disordered eating and renewed hope for recovery, but also be a confident health care consumer and be aware of developmentally appropriate resources available in the community for patients and caregivers.

The information in the book includes both facts and feelings. The scientific, medical, social, and psychological facts associated with eating disorders illustrate what we know. The feelings add a human face to the facts. We all know that individual experience is rarely the same as what we read in textbooks. Although each of our journeys is unique, by sharing stories and experiences, we can build empathy and understanding for those who suffer from eating disorders.

This book deals with all eating disorders. The constellation of factors that cause and maintain anorexia nervosa differs somewhat from those that cause and maintain BED. Yet bringing them together under one cover can improve understanding of how these disorders are similar and different. Personal stories inform our own journeys toward health and are a beacon of light for those grappling with recovery.

Part 1 lays out the facts covering the context of midlife eating disorders, clinical presentation of the illnesses, how they differ from eating disorders in youth, eating disorders in men, and the environmental and biological causes of eating disorders. Part 2 deals with some of the unique challenges faced by individuals with eating disorders in midlife such as relationships, pregnancy, and parenting. Part 3 speaks directly to individuals with eating disorders and gets at the heart of recovery. I lay out the types of treatment that are available, discuss how best to find compassionate care, and reveal my observations about the ingredients of successful recovery that I have compiled in working with individuals with all genres of eating disorders over the past three decades. Each chapter closes with a section called Awareness and Action. Although not a self-help book per se, Midlife Eating Disorders goes beyond informing the reader of the facts about eating disorders in midlife by providing reinforcing activities that enhance awareness of the problems and provide a blueprint for actively initiating and maintaining recovery. These sections can also be used as valuable tools for providers to engage individuals in their care.

Part One

The Facts About Midlife Eating Disorders

Chapter 1

A Culture of Discontent: Why Midlife and Why Now?

Why midlife and why now? These are the first critical questions that we need to address before delving into the topic of disordered eating in adults. To do so, we need to understand the culture and context in which they occur. In part, I contend that the Bigs are to blame, those multibillion-dollar industries that have conspired to make us feel terrible about ourselves at any age. Big Diet, Big Cosmetics, and Big Fashion are mega industries that have developed what is perhaps the most effective marketing strategy in the world. Coupled with the pervasive and global food and beverage disaster propagated by Big Food, Big Sugar, and Big Beverage, they have managed to trap us all in a culture of discontent.

There are several coordinated steps to their strategy that culminate in this discontent, and the various major industries are in cahoots. One profits from the discontent caused by another.

In the past, marketing strategies were more focused on what you own rather than who you are. The theme was based on keeping up with the Joneses by having the latest fashions or driving a flashy car. Although this approach is clearly still being used, an additional and more insidious strategy now dominates. This approach is more personal and targets not what you own, but the basic fabric of who you are and what you look like.

The essence of this new strategy is first to convince you that there is something fundamentally wrong with you. By planting a seed of discontent about some aspect of your appearance and then repeating that message over and over, the marketer causes you to gradually become dissatisfied with that feature. Some of the targets are the old faithfuls: gray hair, baldness, wrinkles, weight, and shape. But then they drill down with targeted mind worms: age spots, freckles, skin tone, size of your calves, color of your teeth, shape of your nails, size of your pupils, and the presence or absence of hair on your chest, your back, or your toes. A New York Times article reporting statistics from the American Association of Orthodontists revealed that the number of Americans eighteen and older getting braces or some other teeth-straightening treatment from an orthodontist jumped 58 percent between 1994 and 2010.¹ Translated, that means 1.1 million adults annually, up from 680,000. One marketing gimmick boiled down to a scenario in which a father takes his child to be fitted for braces only to have the orthodontist turn to the father and say, What about you, Dad? With the average bill for a course of braces running three thousand to seven thousand dollars, if Mom and Dad get braces, too, that could mean upward of twenty thousand dollars on teeth straightening—money that would be better invested in their child’s college fund!

Once they have sown the seeds of discontent, the Bigs then intensify their efforts to persuade you that you can and should do something about your defect. They convince you that you are dissatisfied and that altering your defect would both improve your own quality of life and keep others from being exposed to your disturbing features; thus you become even stronger in your conviction to correct the perceived flaw.

In swoop the Bigs as the savior marketing the product, service, or surgery that will correct the defect they have convinced you that you have. They bolster the appeal by claiming that their solution will not only fix the problem but will also bring with it an absolute epiphany of happiness, contentment, and self-esteem. Convinced, you cave in and buy the product or service and may actually enjoy a fleeting uplifting experience—my toes no longer have hair, my age spots have faded, my abs look firmer—but the joy is ephemeral. And when the solution you paid for ultimately fails and your discontent returns, Big Food will help you binge your misery away and Big Pharma will help you medicate your discontent. The cycle continues, unabated, as the Bigs feed off one another’s failures and profits.

Here’s an outrageous example. Outies are not in was the leading line of a series of commercials that were designed to get you to go into the bathroom, lift up your shirt, and lend a critical eye to your belly button. As summer approached, the ads started propagating what amounted to belly button social anxiety disorder. Afraid to show your belly button at the beach? Olivia, age thirty-seven, found herself lifting up her shirt and wondering what it would be like to have a tidier, innie belly button. Next time she saw the ad, she read further. Maybe umbilicoplasty is for you. She read further and saw that this was an outpatient procedure, requiring only light anesthesia; and the after pictures showed absolutely perfect belly buttons.

For a few thousand dollars and a little bit of recovery time, she could get relief from the newfound shame she was experiencing about her belly button. After saving up the five thousand dollars, she went ahead with the surgery. The advertised brief recovery period turned into a prolonged and painful postoperative infection that kept her from exercising for months. Olivia ate out of frustration, and her weight started to climb (Big Food supplied her with supersize portions of calorie-dense comfort food). That summer at the beach, she didn’t experience a sense of pride about her newly crafted navel, because she was so horrified by her weight gain that she would wear only a loose one-piece bathing suit (enter Big Diet to offer her an array of quick diets to shed those pounds before summer’s end). The next year, Olivia vacillated between periods of out-of-control binge eating and weeks of obsessively following the next popular diet craze. Her quest for a trendy innie paved the way for a continued cycle of disordered eating and dieting.

Jerry was reeled in by a different ad. At age fifty-five, he started to fret over his expanding love handles. He and his wife were having sex less frequently, and occasionally he had difficulty getting or holding an erection. Neither he nor his wife was too worried about it; they viewed it as a natural thing that happened to many aging couples. The hormones simply weren’t raging quite as much as they used to. But then, while waiting to get a haircut, Jerry started reading a men’s health magazine. An article was talking about not having to give up the old you, recounting miracle stories about men who had regained their youth with human growth hormone (HGH). He also noticed copious advertisements promising daily performance. In the wall-size mirror of the salon’s restroom, he grabbed his love handles, looked at himself, and decided he really didn’t like what he saw. There’s no reason to let myself go, he thought. I should try these products. They’re available, so I owe it to myself and my wife to try them.

Jerry started taking HGH and got a prescription for a daily erectile dysfunction medication. He also started exercising—at first three times a week, but gradually increasing to daily and then twice a day. Although he liked the new sleeker look of his body, he wasn’t satisfied and started focusing on his body fat percentage. He kept trying to get it lower and lower, and each time he reached a weight goal, he reset his sights on a new, lower goal. Jerry was quite pleased with his sexual appetite, but he failed to factor his wife’s desires into the equation. While he was ready to rumba every day, her waning hormone levels didn’t match his medically induced ones. She begged him to back off and found his preoccupation with his own body offputting. She finally confronted him one day when she walked in on him naked on the scale. You look sick! she exclaimed. Seeing that he weighed only one hundred forty pounds at six feet tall made her realize that she had failed to recognize all of the warning signs, thinking that this was just another manifestation of a midlife crisis. The promises offered to Jerry by Big Pharma paved his way to years and years of turmoil battling an eating disorder.

Chevese Turner, CEO of the Binge Eating Disorder Association, emphasizes how the Bigs influence eating and weight. Obesity and eating disorders are a capitalistic dream … we blame the individual instead of the food, diet, and pharma industries. We are on a merry-go-round that will be there for many kids for generations to come. Obesity and eating disorders are the result of the perfect storm of sixty-plus years of commercial diets and drugs that induced the rebound effect of weight cycling, plus the thin ideal of the 1960s, plus the inclusion of corn and sugar in everything we eat (not to mention growth hormones in meats). So all of this and much more have wreaked havoc on those predisposed to obesity and eating disorders. But instead of blaming industry for causing the problem, we blame the individual for having the problem. In fact, we create obesity prevention campaigns that blame and shame the obese individual so we can create some more eating disorders too! It’s all about capitalism, consumerism, and keeping women slim and men buff!

These stories are all relevant to adult disordered eating precisely because the Bigs have broadened their target to reach women and men of all ages. Teen girls and young adult women used to bear the brunt of the advertising shoulds when it came to appearance alterations, while older women were more commonly tantalized with recipes and gardening and older men with cars and lawn mowers; but the advertisers are keenly aware of two trends. First, the population is graying. Women and men over age forty-five comprise 34.4 percent of the U.S. population.² Moreover, baby boomers are dogged in their efforts to retain their youthful vigor, and they have money to burn. Unlike teens, who have to ask their parents for cash, or young adults, who may still be paying off debts or just starting off on their own, older folks have deep pockets and in many cases will spare no expense to address the flaws highlighted by the Bigs.

The Bigs induced Olivia to spend five thousand on her navel and Jerry to spend thousands on his meds and gym membership, but we’ll read in the following chapters that eating disorders are not simply reactions to toxic environments. In fact, genes, biology, personality, and culture are all factors. However, the toxic environments that are perpetuated by the Bigs play a considerable role in the demographic shifts we are seeing in eating disorders today.

AWARENESS AND ACTION

For this first awareness and action exercise, take a personal inventory of how Big Industry has affected you.

Look around at your house, your car, your reading material, your cosmetics, your personal products, and your medications and supplements and trace back to what led you to make those things part of your personal armamentarium. How many of the things that you own, belong to, or have undertaken were prompted by industry creating a sense of discontent that you then paid them to remedy? This list should NOT include things that you do for health, like gym memberships or pantries stocked with healthful foods, but only those products or services that purport to eliminate an externally imposed unhappiness.

Examples:

Chapter 2

Defining the Disorders: What Are These Eating and Feeding Disorders?

The diagnostic categories for eating disorders are not stable, and the boundaries are fuzzy. Although some people get one eating disorder and stay in that category for the duration of their illness, many cross over or migrate to different presentations over time. It’s important to remember that diagnoses are descriptive. They give us a framework to understand someone’s difficulties, and they are a way for providers to communicate efficiently with each other and be on the same page. But everyone’s eating disorder is unique. Eating disorders don’t fit into nice little boxes.

Psychiatry likes to invent new mental illnesses with each new volume of their diagnostic bible, the Diagnostic and Statistical Manual of Mental Disorders (DSM). The revised DSM-5, to be published in 2013, will create a new landscape for eating disorders. To put things in context, DSM-I (published in 1952) was 130 pages long and included 106 diagnoses. DSM-II (1968) was 134 pages long and contained 182 diagnoses and DSM-III (1980) was 494 pages long and included 265 diagnoses. This particular version included anorexia nervosa and introduced bulimia to the world as a psychiatric diagnosis for the first time—although the term described a somewhat different syndrome than it does today. DSM-III-R (1987) was 567 pages and included 292 diagnoses. DSM-IV (1994) was 886 pages and contained 297 diagnoses. And now DSM-5 (changing from Roman numerals to the 5 to facilitate regular updates—5.1, 5.2, etc.) is on the horizon, and we will soon discover both how long this new tome will be and how many syndromes it will include.¹

Diagnostic systems tend to create neat little categories, which people may think they need to fit precisely into in order to have a real disorder. This can lead people to think they don’t have a serious problem, to view their problems as insignificant, to postpone treatment, and, worse yet, this kind of thinking can impede insurance companies from paying for treatment for disorders that fall outside of the diagnostic box. But unlike some areas of medicine, psychiatric disorders don’t have clean laboratory tests to verify a diagnosis: There’s no blood test for bulimia, and no X-ray can diagnose BED. These are clinical diagnoses, and most people who suffer from eating disorders are exceptions to the rule rather than textbook cases.

In fact, one of the motivating factors for the changes happening in DSM-5 is that so many people with eating disorders fell into the other category, which used to be called Eating Disorders Not Otherwise Specified (EDNOS). In some reports, 60 percent of people presenting for treatment did not have classic anorexia nervosa or bulimia nervosa, but rather fell into this catchall category.² A sure sign that something is wrong with your diagnostic system is when most people aren’t captured by the categories.

The new diagnostic system is poised to do a few things in an attempt to rectify this shortcoming. The most impactful change is that BED will become a stand-alone diagnosis (more on that later.) Second, the system is positioned to add what are typically thought to be disorders of childhood—pica (eating nonfood substances), rumination disorder (repeated regurgitation of food that may be re-chewed, re-swallowed, or spit out), and avoidant/restrictive food intake disorder (lack of interest in eating or food, avoidance based on the sensory characteristics of food, or concern about aversive consequences of eating)—to form a combined Feeding and Eating Disorders category.

The DSM-5 committee is also aiming to make the flagship diagnostic categories (i.e., anorexia nervosa, bulimia nervosa, and BED) more encompassing by broadening their criteria. This move alone would have reduced the size of the other category effectively; but, in a perplexing move, the committee added more disorders to the new other category, which they renamed Other Specified Feeding and Eating Disorders. This category is proposed to include atypical anorexia nervosa, subthreshold bulimia nervosa, subthreshold BED, purging disorder, and night eating syndrome. The establishment of this category could end up having the opposite effect by reinflating the size of the other category. The committee is even proposing what amounts to an other other category (i.e., Unspecified Feeding and Eating Disorder).³ The world can fundamentally be divided into lumpers and splitters; the DSM-5 committee must have had an overrepresentation of splitters!

THE FUTURE OF SELECTIVE EATING DISORDER

Selective eating disorder, once just called picky eating, is the newest behavior pattern to come under consideration for disordership. Some think that elevating picky eating to the status of a disorder is going one step too far. Dr. Nancy Zucker, director of the Duke Center for Eating Disorders, has valuable thoughts on the issue.⁴ While not entirely ready to call selective eating a disorder, Zucker is increasingly encountering adults whose food sensitivity is so severe that it affects their functioning. Her alarm bells started going off when she noticed that over 20 percent of the individuals presenting to her clinic were extremely picky eaters. This was not just the I don’t like Brussels sprouts crowd, but people whose selective eating was interfering with their lives, their jobs, their relationships, and their parenting. Many adult selective eaters were deeply concerned that their picky eating was setting a bad example for their children. Says Zucker, Eating is social. Family meals are the nexus of family communication, rituals, and teamwork. Selective eating can make such events a time of extreme stress for families who experience extreme aversion—and often fear—at the thought of eating novel foods.

Typically, the most avoided foods are fruits and vegetables, which raises concerns about the effect of selective eating on nutritional status and overall health. And this is not just about taste buds. Selective eaters may actually experience the look, the taste, or the feel of food differently than other people; or they may have had early negative associations such as stomach problems, choking, or acid reflux that may have changed the bodily experience and/or psychology of eating certain foods. To better understand this phenomenon, Zucker and collaborators at the University of Pittsburgh developed a national registry of picky eaters. Zucker thinks selective eating runs deeper than we understand and that these people are not only worthy of consideration for disorder status, but also deserve improved understanding and treatment. What people don’t get, she says, is that picky eating can be absolutely crippling. She recalls one patient who would only eat plain bagels, chips, peanut butter, and cheese pizza (of a certain brand). Imagine the impact this had on his social life!

The primary disorders—anorexia nervosa, bulimia nervosa, and BED—as well as several of the other disorders do not differ by the age of the patient. The criteria for anorexia nervosa are the same for an eight-year-old as for an eighty-year-old. This is distressing to many, especially those who work with children, as the clinical presentations in children are even harder to put into neat boxes. For the purpose of midlife eating disorders, however, the following criteria are directly applicable.

One additional important note about eating disorder diagnoses is that they have been developed with women in mind. Sometimes this ends up being like trying to get a man to fit into women’s clothes. We say the prevalence of eating disorders is lower in men, and for some of the eating disorders, this is probably true. But part of the gender imbalance might well be because the criteria we use to diagnose the disorders and the instruments we use to assess them were based on how the disorders manifest in women. For example, I am satisfied with the size of my bust, is hardly a good screening question for body dissatisfaction in men.

Anorexia Nervosa

Anorexia nervosa is a perplexing and harrowing disorder. It comes in a variety of presentations and degrees of severity. Anorexia nervosa afflicts about 0.9 percent of women and 0.3 percent of men in the U.S. population.⁵ Based on census numbers, this translates to about 1.1 million women and 340,000 men over the age of eighteen with anorexia nervosa in the United States. Anorexia nervosa afflicts individuals across racial and ethnic boundaries, although the prevalence is somewhat lower in African-American women,⁶ suggesting the possibility of some protective mechanism—whether biological or sociocultural.

The DSM-5 criteria for anorexia nervosa will focus on restriction of energy intake relative to requirements leading to significantly low body weight. The precise definition of low weight will consider age and sex, although a specific body mass index [BMI, or weight in pounds multiplied by 703, divided by height in inches squared (or weight in kg/height in m²)] will not be specified in the criteria. The criteria will include either intense fear of weight gain or an alternative that focuses less on fear and more on behaviors that interfere with weight gain (e.g., excessive exercise). The psychological component of anorexia nervosa