Three Experts on the Stigma of Eating Disorders
Advocacy Eating disorders are complex and exist in conjunction with other health and social factors. Three experts discuss how the disease is often misunderstood.
Why do you think eating disorders are so often left out of conversations about mental health?
Claire Mysko: Eating disorders are not illnesses that exist in a vacuum. They are incredibly complex and often connected to other mental health issues. It is rare for someone to have an eating disorder and not be struggling with other illnesses, whether that is depression, anxiety, or substance use disorders. There is a dangerous and persistent misconception that eating disorders are vanity issues, phases, or illnesses that affect a very small percentage of the population. But we know these can and do affect people of all ages, sizes, races, ethnicities, sexual orientation, and socio-economic status.
Dr. Jennifer Gaudiani: I think there continues to be a popular misperception that eating disorders are lifestyle choices or about vanity or attention-seeking. In fact, anorexia nervosa carries the highest death risk of all mental illnesses, while all the eating disorders have dramatically increased death rates, both from medical causes and from suicide. In addition, the sad reality is that our society is obsessed with thinness and weight loss. Truly disordered eating and even eating disordered behaviors continue to be applauded by society and even, tragically, by medical providers, as a result. Eating disorders are not a choice. Weight loss and thinness do not equal health. The vast majority of patients with eating disorders are not visibly underweight, and individuals of diverse ages, sizes, races, socioeconomic backgrounds, genders, and sexual orientations continue to be made invisible by a system poorly set up to diagnose and treat them. We must keep insisting on a more nuanced and social justice-focused dialogue about these tragic illnesses.
Tammy Beasley: Eating is an everyday routine and to those who do not understand or struggle with the complexity of behaviors and consequences associated with eating disorders, the cure is simply eating more or eating better. When I hear the common response of “I wish I had an eating disorder to lose this weight!” after answering the routine question of “What do you do?" it is painfully evident that so many people living in this diet-crazed, appearance-obsessed world simply do not understand what an eating disorder is and the long-term physical and emotional consequences left in its destructive path.
What do you think is most misunderstood about treatment for eating disorders?
CM: These aren’t just disorders you see on the surface. Media coverage tends to focus on the physical and medical complications, which are realities. But it’s important to understand that eating disorders are often not visible in extremes. Treatment requires a comprehensive approach to address the complex issues that are driving these damaging behaviors and thought patterns, including bingeing, purging, restriction, compulsive exercise, and an obsession with food and weight.
JG: There are three key misunderstandings about eating disorder treatment. One is that if someone will “just eat,” or “just stop purging” or “just stop bingeing,” they’ll be all better. These are complicated mental illnesses that require intensive support, often by a multidisciplinary team of providers including a therapist, dietitian, and doctor, over a long period of time. That leads me to the second misunderstanding. Many loved ones hope and expect at the time of diagnosis that recovery can take place in a matter of months. I’ve had so much pushback from loving family members who push back at the prospect of a patient missing out on this month’s athletics, or this semester’s sport. The reality is that eating disorders can take a shockingly long time to get better. One study showed that nine years after their initial hospitalization for anorexia nervosa, only about one-third of patients had achieved recovery, while 26 years after that initial hospitalization, less than two-thirds of patients had recovered. This reinforces how vital early diagnosis and treatment are. Finally, many people misunderstand the theme of body weight in eating disorders. There’s a common misconception that if someone isn’t visibly malnourished or underweight, they must be fine. Or worse, if someone is in a larger body, they must need to lose weight to be healthy. Experts in eating disorders know that when an individual is able to nourish themselves adequately throughout the day with a variety of foods, moves for joy within their ability and interest, and is able to attend to their mental health–all really complicated achievements for many reasons–then their body will take on a shape and size that’s essentially written in their genes, also influenced by their environment and stress. We must honor body diversity in recovery efforts.
TB: The assumption? Eating disorders only affect thin, adolescent Caucasian girls who grew up in a socially acceptable but emotionally disconnected family. The reality is eating disorders cannot be defined by body size, age, race, gender, social status, or family dynamics. Eating disorders are multi-dimensional and treatment needs to be the same. Like the Alsana Adaptive Care Model™, treatment for lasting recovery embraces the whole person and integrates a balance of therapy, medicine, nutrition, movement, and relationships that adapts to each person’s life story in every stage of recovery.
Why do you think there is so much stigma surrounding eating disorders? What do you think people most often get wrong about eating disorders?
CM: There is a lot of shame and secrecy around eating disorders. People who struggle with these illnesses are dealing with a lot of isolation. They distance themselves from relationships, friends, and family members. We hear from people who contact us through NEDA’s helpline who have been told “You look fine, get over yourself” or are shamed for their weight. These are not trivial surface issues! They are serious mental health issues with the highest mortality rate of any psychiatric diagnoses. The perception that this is just about weight and vanity make people struggling feel they are not deserving of help.
JG: There are a lot of layers to this question, and there are so many individual stories that could answer this question differently. Many of my patients have said they wish that there were more openness about eating disorders as tragically severe mental illnesses, so that there would be more open support. They wonder where their “ribbon” is, showing that people would openly fundraise and compassionately improve awareness about the screening and treatment of eating disorders, the way we do for cancer or for heart disease. I think mental illness as a whole continues to experience stigma, an unscientific sense that maybe mental illness isn’t as “real” as medical illness. Not true! I also think that any mental illness that predominantly affects women–although people of all genders are susceptible to eating disorders–will face stronger headwinds because of sexism. Finally, this is a country dangerously obsessed with body size and shape. The same behaviors that would be acknowledged as dangerous in someone who’s underweight are recommended in the doctor’s office to someone who’s overweight. Until our country deals with its pervasive internalized size stigma–where people mistakenly equate thinness with health and happiness–we won’t be able to shake our collective stigma about a mental illness that ties body, food, and psychology together.
TB: With a diet industry making billions and a constant influx of “good versus bad” food messages, self-comparison that falls short of the perceived ideal seems inevitable. Eating disorders thrive in environments that define body differences as lack of willpower and solutions as easy as the next fad diet or workout. As our national obsession to fix the “obesity epidemic” increases, so does the number and diversity of eating disorders, yet many don’t recognize this connection. The internal shame that lies underneath is too difficult to address. Therefore, it’s easier to focus on external things like food and exercise to mask deeper issues.
What advice do you have for someone suffering in silence?
CM: Even though you feel you are alone, you aren’t. Eating disorders affect 30 million Americans at some point in their life. It’s important to push through the shame and embarrassment and reach out for help. The sooner you do that, the more likely it is you will find help that is affective. Early intervention is crucial, and recovery is possible at any time. If you think you may have a problem or are concerned about a friend or family member, you can use NEDA’s screening tool to answer key questions and see if you need to seek professional help.
JG: My advice would be: You may have really good reasons for having suffered in silence. Maybe it hasn’t been safe to open up. Maybe you’ve already been invalidated if you tried to share your suffering. Maybe the eating disorder has been whispering to you that no one will understand, that it’s your secret, and anyway you aren’t sick enough to seek help. Maybe you aren’t a cisgender, white, young, thin, straight female, and thus you don’t feel represented in the typical media portrayals of someone who has an eating disorder. Maybe you have no resources to seek good help. I offer you so much compassion if any of these apply to you. What I hope for you is that something might shift, just a little. That you might find a trusted person in your life and admit that your relationship with food and your body has gotten to be an obsession, a burden, an isolator, a dark and scary problem. Then that person can help you find expert assistance. I hope you will hear me when I say that having an eating disorder or even disordered eating makes you sick enough to seek help and that recovery is possible.
TB: An eating disorder feeds on silence. And silence feeds on shame. Tell someone you trust that you are not okay and that your relationship with your food and body is out of control, even if you don’t understand what caused it and you don’t know how to stop it. Shattering the silence begins breaking the shame cycle. Regardless of how long or dark the journey ahead may feel, full recovery is possible. Experienced clinicians like Alsana’s treatment teams can help you reclaim the word “healthy” to embrace life and healing, carrying hope for you until you can hold it yourself.
What has been the most rewarding part of working in this space?
CM: Being able to connect with such a passionate community who have been through a tremendous amount of struggle and challenge is incredibly rewarding. We talk about “recovery warriors” and that is such an appropriate term. The amount of work and self-awareness it takes to make a recovery is tremendous. Witnessing the strength and compassion of the eating disorders community has been very rewarding as well. Though our life experiences are vastly different in so many ways, we have this common experience. This is a serious public health issue we can bring awareness to if we join together.
JG: I absolutely love working with patients who have eating disorders. My favorite part is how I get to meet these remarkable individuals, each with their own stories, each with their own challenges, and together we get to start to create a vision of what recovery might look like. As an internist, I get to use objective evidence of body suffering to help break through denial of disease severity and help motivate behavioral change. I also find it deeply satisfying to work as part of a multidisciplinary team of professionals, where I never try to play therapist or dietitian but rather get to learn from those wonderful folks and together help someone get to the point where they are better able to live their values.
TB: Walking the ups and downs of the healing journey alongside another and sharing hope that recovery is possible never loses its magic even after over 30 years practicing in this space. I know what the professional and personal side of eating disorder recovery looks and feels like, having walked both myself. Balancing physical and emotional nourishment and pleasure in both food and the meal experience itself restores freedom to enjoy all foods without shame or judgment. That message of hope is reflected in every stage of recovery at Alsana and is my greatest reward when reflected in our clients’ lives.