Over the past two years, I've begun opening up about my eating disorder. I often discuss the effects my anorexia and bulimia had on my body, my mind, and my relationship; I also attend functions, participate in NEDA events, and write about the reality of eating disorders online.
But this ready openness did not come easily. For years, I could not even internally acknowledge my eating disorders, let alone talk about them in public. I realize now that this is common with all types of mental illnesses, due in large part to the stigma surrounding mental healthcare. A recent poll from Kings College found that stigma — a mark of disgrace associated with a particular quality — prevents 25 percent of people age 18-25 from seeking help for mental illness. For a long time, I fell squarely within that group.
Though I had struggled with my weight and self-esteem throughout my life, my disordered eating began in high school. As my schooling progressed, so did my eating disorders; during my sophomore year of college, I broke past my lowest previous weight and kept dropping. By this point, I was able to admit that I had an unhealthy relationship with food and myself, but I was unsure of how to proceed. While my eating disorders were suffocating, I always feared that living with the stigma of mental illness attached to me would be worse. So, I got sicker and sicker. Then, in June 2013, I was sexually assaulted and shut down altogether.
I spent most of my time at the hospital asleep or sedated. When I was awake, I would watch the heart monitor spike and dip along with my heart beat. Looking at that jagged line moving across the screen, I realized I was finally more afraid of dying than I was of being 'outed' for my eating disorders.
I took a medical leave from college that fall semester. I wasn’t processing my trauma, and my eating disorders were constantly undermining my ability to function. I started experiencing dissociative seizures that were exacerbated by my body physically shutting down from malnourishment. A month later, I was admitted to the hospital. I cried and battled with the doctors, insisting “I’m fine. I’m not insane, it’s not in my head. I’m not crazy.”
That hospital visit was an epiphany — though not necessarily the good kind. Nurses could not find my veins to take blood samples, I didn't have enough body fat to safely receive necessary procedures, and my resting heart rate was 42 beats per minute. I spent most of my time at the hospital asleep or sedated. When I was awake, I would watch the heart monitor spike and dip along with my heart beat. Looking at that jagged line moving across the screen, I realized I was finally more afraid of dying than I was of being 'outed' for my eating disorders. At that moment, I knew I had to face the stigma if I wanted a chance to feel whole again.
I entered a treatment clinic a few months later. After some group sessions, I realized that feeling embarrassed and inadequate because of the disorders we lived with, be it binge eating, bulimia, anorexia, or UFED, was a common theme in the lives of many others in treatment.
Two years of weekly individual and group therapy helped me change my perception of mental illness, which in turn helped me value myself and others — and that went a long way in aiding my recovery and eventual remission. As it's currently National Eating Disorder Awareness Week, it is my hope that we can begin to dismantle the stigma that folks with eating disorders (or other mental illnesses) must live with — stigma that can often take the form of the six myths below.
Myth: Stigma Is Not A Barrier to Treatment
The National Alliance on Mental Illness (NAMI) describes mental health stigma as "one of the most challenging aspects of living with a mental health condition." Stigma typically entails prejudicial attitudes and discriminating behavior directed towards individuals with or perceived to have mental illness, and can leave the recipient feeling shame or humiliation. As you might expect, this makes it more difficult to seek treatment.
With eating disorders in particular, stigma propagates the notion that they are self-inflicted, choices or diets gone awry. When ideas like that get absorbed into the social consciousness, it can be difficult for some to see how life-threatening eating disorders are.
Mental health stigma is dangerous — but it is also nothing new. Heather Stuart in World Psychiatry notes, "negative societal responses to the mentally ill have been ubiquitous throughout history — a situation that has persisted through changing concepts of mental illness — even through the rise of medical theories and biologically-based explanations for most mental disorders."
Whenever an attitude is this commonplace, it can be difficult to realize the role you may play in continuing its existence — which is why it's so important to take an active role in calling out stigma and working to dismantle it.
My therapist used to tell me, "A lapse does not mean relapse." If you are working towards recovery, know that a bad day does not make you weak or less worthy.
Myth: Telling Yourself "You Are Beautiful" Can Cure All Eating Disorders
In a time of increased awareness and knowledge of body positivity and acceptance, I don’t want to undermine or undersell the importance of those movements. However, some approaches to treatment that stress body positivity can miss the fact that eating disorders are multifaceted mental illnesses.
Eating disorders aren't just about body image or wanting to lose weight. Social expectations can be a component (i.e. stigma, unrealistic body expectations, etc.), but so can biological factors and psychological influences. For example, eating disorders can be rooted in issues with biochemistry — certain chemicals in the brain that control hunger and appetite can become unbalanced and fuel feeding or eating disorders. Lack of control, low-self esteem, and negative self-evaluation can also drive disordered habits.
My own eating disorders were often agitated by a perceived lack of control and rush of negative emotions. If I had a fight with my partner, I would often purge to release negative emotions. If my school schedule started to get hectic, I would carefully draw out calorie maps to monitor and reduce my caloric intake. In those moments, I didn’t care what I looked like — I cared about what I felt.
Body positivity can be a great help to some people suffering from eating disorders, and less of an asset to others. It is vital to remember eating disorders are genuinely complex mental health issues, and like all mental health issues, need to be addressed differently among different people. By doing so, we can start building community support systems and having productive, open conversations.
Myth: Only Certain Kinds Of People Have Eating Disorders
My group session was one of several that the clinic hosted. Towards the end of my first year, I learned that one of the groups was for male patients. I asked my therapist why the men were not allowed in my session, which included a diverse group of women.
He told me the clinic didn't separate us to draw a distinction; rather, the men were all relatively new patients who were still uncomfortable talking about their thoughts and behaviors in front of women. The persistent stigma that only women suffer from eating disorders made it difficult for these men to access the full range of care available to them at the clinic.
As a white, cisgender female, I had not spent much time thinking about the intersectionality of eating disorders. To be perfectly honest, I did not think about it all. At that point, I didn't think I knew anyone else with an eating disorder, so my only metric was myself. But after that discussion, I logged onto the National Eating Disorder Association's website and started to read the stories shared and published on their blog. It helped me learn more about the people often missing from the primary cultural narrative about eating disorders and mental health in general.
Eating disorders affect people of all races, gender identities, sexualities, and ethnicities. It is important that we realize this and push for universal access to affordable, mental healthcare. Everyone’s experience is valid and worthy of recovery.
Myth: Once You Go Through Recovery, You're "Cured"
I started my program with a mindset that it would be a transformative experience that would halt my habits completely. However, that wasn’t the case; even now, two years into remission, I still have bad days when I feel the compulsion to restrict my diet or purge.
But I don’t beat myself up for it. Part of recovery is learning to love and accept yourself, faults and all. And while that is difficult, there are steps to get there. NEDA recommends starting small: cut yourself some slack and pay attention to how you are feeling. It may seem a little bit basic, but NEDA stresses "for those recovering from an eating disorder, taking time for self-care is an especially important part of recovery." Small, continuous steps forward add up.
And while there may be bumps in the road, they should not derail your progress. My therapist used to tell me, "A lapse does not mean relapse." If you are working towards recovery, know that a bad day does not make you weak or less worthy.
Myth: Therapy Is The Only Thing Necessary To Treat An Eating Disorder
At first, I was resistant to taking medication for my eating disorder, because I was barely coping with the idea of therapy — the thought of taking medication made me feel even more out of control and weak. But as I discussed this with my psychiatrist, he pointed out that I was once again letting stigma control my recovery. And he was right. Once we broke down my emotions on a chemical level, I began to realize that in some cases, medicine is necessary — and this was one of those cases.
I can’t say this loudly enough: Taking medication does not make you a failure. I was prescribed an assortment of medication throughout my therapy sessions to cope with depression, PTSD, and anxiety. This overlap is not unusual — almost 70 percent of people diagnosed with eating disorders also have what are called Axis 1 comorbidity disorders, which include anxiety, depression, and social phobias.
Crystal Karages, MS, RDN, IBCLC with Eating Disorder Hope wrote that "The right medication can be a therapeutic part of treatment and managing symptoms associated with anxiety or depression. When these symptoms are better managed, this can help a person focus on recovering from the eating disorder more effectively." Seeking treatment and help, be it through medicine, therapy, or a combination of the two, should be lauded.
Myth: It Doesn't Matter What Motivates You To Go Into Treatment — Your Outcome Will Be The Same
Once I was stabilized at the hospital, my grandparents and I discussed treatment programs. I hesitated, but after seeing how tired and worn out my family was from late nights in waiting rooms, I resigned myself to entering one. While that got me to go to the program, it wasn’t until I decided that I wanted to be there for myself that I found my habits and thoughts changing. After that, I was able to not only participate in recovery steps, but actively maintain the work I was doing.
Part of addressing the low self-esteem or self-image that can accompany an eating disorder is learning to find value in oneself. By improving your self-evaluation, you can increase motivation for recovery. This in turn can significantly reduce your chance of relapse. But even with motivation, support, and therapy, recovery is difficult and not every recovery is going to look the same. And that's okay, as long as you remember to prioritize your self and your health.
These tips are by no means exhaustive. Much like any mental illness, the stigmas surrounding eating disorders are fed by several factors. But working to dismantle those stigmas can help create an environment where more people can find relief and treatment. I urge you to look at organizations like NEDA and NAMI to keep up with events happening in your community and online. Active and continued participation can help the thousands of people living with an eating disorder find peace and acceptance.