Millions of people who need treatment for eating disorders go undiagnosed. One young woman’s infuriating story should serve as a wake-up call for the medical community.
Eighteen-year-old Alexa Giardino sat with her legs dangling from an examination table. She swung them gingerly, nervously waiting for her lifelong physician to walk through the heavy wooden door. She was only there for a routine check-up, but her palms were sweating. She kept trying to wipe her hands on her tissue paper gown but they would just stick.
The door suddenly creaked open. Clipboard in hand, her physician entered with a smile. “Hi Alexa,” she said. “Let’s get you weighed and measured.”
Giardino leapt down from the table and padded over to the scale. Her weight was the current focal point of her entire existence. She knew she was exactly 129 pounds. She knew she was thirty pounds lighter than at her last appointment the previous year. But most importantly, she knew that she owed her weight loss to countless post-meal purges.
She held her breath and sucked in her stomach, waiting to see if her physician’s face would fall into a frown. She anxiously envisioned a scenario in which her doctor would be forced to confront her about the possibility of having an eating disorder. Instead, after what seemed like a solid minute of fidgeting with the scale, a pearly-white smile spread across her doctor’s face.
“Wow, you lost a lot of weight! Congrats! Now let’s check your blood pressure.”
For the rest of the appointment, Giardino found herself in a hazy stupor. She went through the motions, inhaling and exhaling when her doctor placed the cold stethoscope to her chest. She bent over and touched her toes as her doctor ran her hands over her spine, checking for scoliosis.
“Looks like you’re all ready to head off to college,” her doctor said. “You can put your clothes back on now.”
As she pulled on her pants, the button on her size-six jeans seemed menacing. All Giardino could think about was that she still wasn’t thin enough. If a medical professional couldn’t tell that she had an eating disorder, then surely she must have not been trying hard enough to shed pounds.
“This was so disheartening for me, because this same doctor has known me since I was eight years old, has seen me cry every time I had to get on a scale because I was always an overweight kid and ashamed of it, but now eighteen years later all of a sudden I’m an average weight?” Giardino says in an interview four years later.
“We praise these people who are losing weight so fast and intensely, that if they were a smaller size we would be trying to get them treatment, not praising them. Where is that line, and why does it exist?” Giardino asks.
Now a 22-year-old graduate student of social work at SUNY Albany, Giardino is one of an estimated thirty million Americans who have struggled with an eating disorder. But there is something unique about her struggle that made the path to recovery more complicated than usual.
A lot of people don’t think a chubby girl can have an eating disorder. The pervasive stereotype in our culture of someone suffering from an eating disorder is that of a tiny, emaciated girl who thinks she is fat but is really withering away. But it’s so much more complicated. As Giardino’s case shows, it’s possible for a person to suffer from disordered eating and to have an unhealthy obsession with their weight, while still technically being what’s considered a “normal” weight
“My first therapist straight-up told me, ‘I don’t think you have an eating disorder, you just have anxiety,’ Giardino says. “I had tried telling her about how I was making myself purge, but she completely brushed it off, and it was such an invalidating experience.”
Giardino’s case is one specific example of the problematic ways in which mental health professionals traditionally identified eating disorders.
Before the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was published in 2013, sixty percent of eating disorder patients were diagnosed with “Eating Disorder Not Otherwise Specified” (EDNOS), a label for those who had only some anorexic or bulimic traits. For example, someone who had symptoms of anorexia but continued to menstruate would be diagnosed with EDNOS.
The fact that EDNOS accounted for the majority of eating disorders in the United States suggested that existing diagnostic criteria were inadequate. So, the DSM-5 revised the rigidity of eating disorder categories, and replaced EDNOS with Otherwise Specified Feeding and Eating Disorders (OSFED).
OSFED is very similar to EDNOS in the sense that both are just “other” categories where patients who do not meet all of the criteria for a bulimia or anorexia diagnoses fall. The biggest difference is that OSFED is a much smaller category because of the newly-expanded definitions of anorexia and bulimia. Those who were previously labeled as EDNOS could now justifiably migrate into being diagnosed as straight-up bulimic or anorexic.
Currently, about thirty percent of Americans with eating disorders fall under the OSFED label. While this is half the percentage of EDNOS diagnoses, eating disorder advocates believe there is much more work to be done.
Jenni Schaefer, National Recovery Advocate of Eating Recovery Center’s Family Institute, wants to put forth a method of treatment that cares for patients as the unique individuals they are, rather than treating them according to still-rigid diagnostic categories.
“I wish we didn’t have to diagnose people altogether,” Schaefer says. “A diagnosis cannot measure someone’s pain and suffering.”
Schaefer knows this first-hand. She recounted her own experience recovering from an eating disorder in the bestselling self-help book she co-authored with psychologist Jennifer J. Thomas, Almost Anorexic: Is My (or My Loved One’s) Relationship with Food a Problem?
The book asserts that while one in two hundred adults will be diagnosed with anorexia nervosa in their lifetimes, a whopping one in twenty adults will experience key symptoms for a clinical eating disorder but will not receive any treatment for it. This phenomenon, which Schaefer and Thomas coin “almost anorexia,” is just as legitimate as a full-blown eating disorder in their eyes.
When Schaefer was first diagnosed with an eating disorder after graduating from college, she fell under what was then the EDNOS category. As her eating disorder progressed, she eventually lost enough weight to be diagnosed with anorexia nervosa. She entered inpatient treatment, and as she started to approach a “normal” weight was shuffled back into the EDNOS category for the rest of her treatment, even though she was far from cured. She realized that while her anorexia diagnosis was seen as more severe, she was still struggling while categorized as EDNOS.
Schaefer insists that eating disorders exist on a spectrum that is impossible to capture with current diagnostic techniques. She adds that those who are diagnosed with an acronym, whether EDNOS or OSFED, typically feel invalidated. That’s why in her discussion groups, specific labels are rarely used in order to describe someone. Instead, all participants just use the label of “eating disorder” to establish a common ground.
This concept of individualized care is something that Giardino didn’t see as an option.
“Going to inpatient treatment was something that I never wanted to do because I didn’t fit into the body standard of someone with an eating disorder,” Giardino says. “I thought that being around girls that were thinner than me was just going to exacerbate how I felt and things I was going through. The reality is that even when I was at my thinnest, 129 pounds, I still don’t think I would have qualified for inpatient treatment.”
This is because Body Mass Index (BMI) is frequently used by physicians in order to assess whether someone has an eating disorder, particularly when diagnosing anorexia nervosa. In order to be clinically anorexic, a patient must have a body weight less than 85 percent of what is expected in the individual’s age, gender and height class.
With the DSM-5, this 85 percent mark is not set in stone. These new guidelines leave body weight up to the interpretation of the health care professional, so a patient does not need to lose a certain amount of weight in order to be considered eligible for diagnosis. But stereotypes tend to die hard.
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As the hazy summer before entering college drew to an end, Giardino still had not been diagnosed with an eating disorder. She didn’t feel deserving of help. She wasn’t one of those wasting-away girls, even though she felt weak and was consumed by thoughts of dieting and food.
Lauren Smolar has encountered many individuals with OSFED since becoming the Director of Helpline Services at the National Eating Disorders Association, and says that the issue of whether one has a “legitimate” eating disorder is pervasive and can hinder people from seeking treatment.
“If the reason they have received [an OSFED] diagnosis is because they do not meet BMI criteria, it can be misleading, confusing and feel like they don’t have a serious enough issue,” Smolar says. “This can be very tough to deal with when just beginning recovery.” Some patients, Smloar adds, “fear that they will be rejected when seeking out help.”
As Giardino entered college, the severity of her eating disorder intensified. She subjected herself to hour-long workout sessions at least six days a week and purged everything she ate. She memorized the times of day when the dorm bathrooms were emptiest to ensure that no one would hear her retching. She trained herself to feign the act of eating when she would not be able to purge afterwards, masterfully fidgeting with the food on her plate to make it look as if it was reducing in size.
Her peers noticed her weight loss, and they were ecstatic about it, even envious. As she recounts those days, Giardino pulls up a picture from her Instagram that shows her at her thinnest, with a long chain of positive comments from friends and family about her appearance.
“Look at these comments,” Giardino says as she scrolls nearly three years back on her Instagram account. She smiles as she reads some of them out loud. Most are friends raving about how thin she looked, with emojis scattered for emphasis. At the time, the social currency the weight loss gave her raised the question: Why would she stop?
Suddenly, a somberness settles over her. She locks her phone and set it face-down on her lap.
“I still wasn’t thin enough for people to realize I was struggling,” Giardino says. “And you know what? I look at that picture, and I know I was just too thin. BMI is bullshit.”
The stress of college life was also intensifying Giardino’s anxiety and depression. Her mother persuaded her to find another therapist. Giardino passively agreed.
She expected it to be just like any other therapy session. She thought she would sit down and talk about how she throws up after every meal. She thought her new therapist would respond to that statement with doubt, projecting his own preconceptions of what a girl with bulimia looks like onto Giardino. But she was pleasantly surprised.
“It was really validating when I got to my new therapist, to have this big, two-hundred-pound man sitting down with me and saying ‘I’m going to diagnose you with bulimia,’” Giardino says. “That was the first time I felt validated. I thought I would never fit that criteria.”
Sitting across from her new therapist, Giardino was completely taken aback. She became slightly defensive, and immediately countered: “How? I’m not underweight.”
He explained that from what he could tell, food-related thoughts were taking up about ninety percent of her day. It was an obvious warning sign that could not be overlooked, even if her weight was within what was considered a normal range.
Giardino was restless, finally feeling affirmation for an illness that had been seemingly invisible to everyone around her. She was determined to be productive in her recovery, and she reached out to others she found out were also being treated for eating disorders. Her brother’s ex-girlfriend was one of those she contacted, and as their friendship developed, she encouraged Giardino to look into the organization Project HEAL.
Project HEAL is a non-profit that raises money for those who cannot afford adequate insurance coverage for eating disorder treatment. The average cost for eating disorder treatment is approximately $30,000, which covers about a month of inpatient treatment. Although eating disorders affect a large portion of the American population, insurance often doesn’t cover treatment because of narrow, weight-related diagnostic criteria.
During the time Giardino was seeing her new therapist, her father got laid off. Eventually, she got a phone call from him about their financial constraints. She felt a pang of anxiety when her father warned, “Unless insurance starts helping us out, you can’t see your therapist anymore.”
But this fear was short-lived, and she has a hunch that her mother is to thank for her continued psychiatric support. “It was a very panicky feeling, but I have a feeling my mom had a screaming match with someone, because all of a sudden I was getting covered,” Giardino says with a chuckle.
After learning about Project HEAL, Giardino was inspired. She decided to apply to start a chapter during her senior year of undergrad at SUNY New Paltz. The only hitch was that the organization states that one must be fully recovered in order to be a community leader and conduct meetings. This was an issue, as Giardino still occasionally found herself kneeling in front of the toilet if she felt particularly guilty about something she had eaten. But as her application was pending, she used the potential to be a positive force among those who also struggle with eating disorders as her main drive for recovery.
She would ask herself every time she thought about purging, “How am I supposed to stand in front of people and be there for them if I’m not there for myself?”
The summer before entering her senior year of college was slipping away, and every day that passed without news about her application, dampened her spirits. But one day, the phone rang and brought her to tears. She was approved to start the SUNY New Paltz chapter of Project HEAL.
The group, while small, was diverse. It was composed of about ten people who experienced all different types of eating disorders. Giardino would look around during group meetings and no longer feel alone in her struggle.
“There were so many varying weights in Project HEAL,” Giardino says. “We all still look very different. We all have been heavy, or thin, or maybe not. Some of us have stayed the same weight our entire lives. There is no one narrative for an eating disorder.”
Community is not something to be taken for granted when so many who live with eating disorders feel like their struggle is completely their own. According to the National Eating Disorder Association, the mortality rates for eating disorders are higher than that of any other mental illness: four percent for anorexia, 3.9 percent for bulimia, and 5.2 percent for OSFED.
Giardino recently completed her first year of recovery. How will she celebrate? With food, of course.
“I’m going to sit down with all of my friends and plates of what I would have considered ‘bad food,’ and I’m just going to let myself eat,” Giardino says. “And maybe have a few glasses of wine,” she adds with a laugh.