Powerful eating disorder survivors disprove the falsehoods and stereotypes of eating disorders.
By Jena Cormas
Sarah Easterday’s life almost ended during a 17 day hospital stay for a severe eating disorder.
She was in such a malnourished and fragile state that a doctor told her exhausted parents that they weren’t sure if she would make it through the night.
After years of anorexia’s overpowering voices, Easterday’s brutal battle for recovery had only just begun.
According to the National Eating Disorders Association, “Eating disorders are real, complex, and devastating conditions that can have serious consequences for health, productivity, and relationships. They are not a fad, phase or lifestyle choice.”
Anorexia is ranked as the most lethal of mental disorders. More people have eating disorders than schizophrenia or AIDS.
More women will die from the health consequences of eating disorders than breast cancer.
Mortality rates in eating disorder patients fluctuate between 5 to 20 percent based on the duration of eating disorder symptoms and the practice of acting out on eating disorder behaviors.
Eating disorders are known to manifest in both the physical and mental, internally and externally. Still, the misconceptions of eating disorders in today’s society are overwhelmingly stereotyped to underweight, white teenagers, rather than the ever-evolving, non-discriminatory faces ED’s have become.
There’s a stigma amongst society that eating disorder patients must be below a certain weight, must eat nothing, and have certain symptoms to be considered affected.
Social media platforms serve as outreach to spread commercial ideas and psychoanalytical marketing. Advertisements are accented with traditional standards of appearance and lifestyle, while publishers from magazines and clothing companies utilize those same methods for seizing attention and sales.
Recently, the movement for body positivity and the adoption of “real” bodies has demanded attention and clustered many of the same social platforms and companies. This creates a contradicting and confusing public identity. Does society want to accept and embrace the average size of a human’s body, or does society want to continuously drive sales of health products and further investment opportunities?
“Anorexia gets a lot of positive regard,” said Lisa Pope, a licensed clinical social worker who specializes in the treatment of eating disorders such as anorexia, bulimia and binge-eating disorder.
“I think it’s too simplistic to say this one thing causes it, because it doesn’t,” Pope said. “It’s so multi-faceted, but do media and advertisements play in? Absolutely.”
Pope has 20 years experience with eating disorders. She fully believes the proverb that “genetics loads the gun, while environment pulls the trigger.” At the same time, she believes society is partly at fault for the evolution of eating disorders.
“When I started into this, pretty much, it was white, middle class girls that got eating disorders…and what they saw when media started to use more women of color in mainstream advertisements, they started to see rates of ED behaviors go up in populations that were pretty much immune [before], such as the black community where there’s a different cultural expectation and ideal of what beautiful is.”
Easterday’s eating disorder started as a diet to lose ten pounds. She wanted to lose the weight in order to be a little healthier and more confident.
As her diet progressed rapidly into severe weight loss, she recognized that she was beginning to be afraid of the smell of food, fearing she would absorb the calories and gain all weight she had worked so hard to lose.
Quickly her world became drowned with the fear of food, and this fear made the simplest of actions, such as socializing with friends, a nearly impossible act.
Her physical and mental health became so threatened that in the summer of 2013, Easterday needed to be hospitalized in order to be medically stable before she could enter an inpatient eating disorder program.
Even as she sat motionlessly in a hospital bed and connected to a plethora of wires, she was still in denial that she had such a severe disorder.
Loud machines echoed against ill-fitted jokes brought by an episode of Seinfeld playing on the television.
“The next thing I remember is waking up to 6 or 7 people around me and seeing a lot of bright lights,” Sarah recalls.
Her parents, a cluster of doctors, and nurses were with her in a different room, she was connected to louder machines and even more binding wires.
She was desperate for explanation, overwhelmed with ignorance.
“It felt like I had slept for days and days and then lost all recollection of what was real.”
The doctor steadily welcomed her back to consciousness and told her she had fallen into a coma and was unresponsive for three fragile days.
It was then, as hospital staff inserted a feeding tube, that Sarah realized the gravity of her eating disorder.
Her struggle to fight has remained constant since her 2013 hospitalization. In months leading to 2015, she had relapsed and was so weak she could barely walk. She knew from previous health consequences that she needed to eat, but the voices were loud; speaking to her in a convincing tone that she wasn’t allowed to eat unless at a scheduled time, always count calories and never sit still.
“My parents gave me an ultimatum – either I go to Denver for treatment or I was no longer allowed to live with them. I had no where to go, but the thought of treatment terrified me and I couldn’t decide which was worse – gaining weight or being homeless.”
Over the next several days, with harassment of incessant thoughts and utter desperation, she ultimately dismissed suicidal thoughts, and agreed to get help.
Her father pushed her in a wheelchair and together they boarded a plane to admit her into a partial program in Denver, Colorado.
Sarah has since dedicated herself to recovery and currently is “really happy”.
“I still can’t listen to my body. My eating schedule is very ritualistic. It’s so hard for me to wrap my head around the fact that most people aren’t obsessed with food like this.”
The world for someone living with an eating disorder never fully separates from the thoughts and symptoms of their diagnosis; however, it improves with strength and determination.
In some U.S. states, eating disorders are not seen as mental disorders, therefore many vulnerable people are left without vital treatment.
Insurance companies often stereotype mental health coverage with black and white guidelines to follow in order to determine the necessity of treatment. This practice extends to classifying eating disorders and the level of treatment the patient is allowed to have within his or her health coverage.
Tyler Bubin’s symptoms of bulimia progressed so severely as he pushed his body through excessive exercise and uncontrollable binges; he seemed incapable of recovery without proper intensive treatment brought forth by Western Psychiatric Institute and Clinic’s partial eating disorder programs.
His insurance coverage evaluated one’s eating disorder in three ways that included assessment of mental state of mind, observance from blood work results and height to weight ratio.
Bubin’s external appearance seemingly contradicted the stereotyped perception he constantly faced as a male with an eating disorder. On the surface, he presented himself as a fitness enthusiast and determined college student, but in reality, he was exhausting himself over the ritualistic cycle of bulimia.
He believed after assessment that the analytical system was entirely slanted towards the external and internal symptoms of anorexia.
“I was an outlier,” he said. “Since I was a male who was at an arguably healthy weight, and took multi-vitamins and electrolytes to offset the trauma I put myself through after a night of binging and purging.’
Bubin needed intensive treatment to re-introduce normalized eating, as well as group and individual therapy to combat the disordered thoughts. He fully intended to recover from his disordered symptoms, however was left to fight with his insurance company as well.
“I was in constant limbo whether or not I would continue to receive treatment. I was lucky I was able to stay as long as I did.”
Bubin, 22, was always waiting for the notification that his insurance was dropping coverage for his continued treatment.
The threat of having to pay out-of-pocket for treatment is a common worry for many eating disorder patients that don’t fit the stereotyped mold that insurance companies categorize such disorders into. The vast majority of people are unable to pay the thousands of dollars that intensive treatment programs cost, so many go untreated and worsen.
“I had to reach rock bottom with my disorder to realize I had to get better and now I was being pushed out of this program that I viewed as a beacon of hope,” Bubin said.
Insurance companies are not the only interference with treatment that many eating disorder sufferers have to face. Some health professionals such as medical and psychological doctors are unaware of the gravity of symptoms and are unable to recognize physical and mental symptoms, therefore missing the opportunity to initiate possible recovery sooner.
Kasie Chappell, 28, started showing symptoms of her eating disorders while in high school. She was an athlete and had a normal BMI for her height. When she was inspired by weight loss videos presented in health class, she began to limit portion sizes and exercise more, however, quickly her restrictions caused her to miss meals and receive compliments for her noticeable weight loss.
“I was sitting in my history class, [when] I started to feel dizzy and nauseated. Next thing I know I wake up and my friend was carrying me down the hall to the nurses office.”
Chappell fainted and was rushed to her family doctor. The doctor ordered blood work and asked her a few questions.
“I remember my answers because I was honest and scared. I didn’t know what was wrong. He asked me when was the last time I had ate.”
Chappell had answered that she had eaten a slice of pizza the night before. The doctor let her leave, but only after diagnosing her with depression and suggested she eat more because of her lack-luster nutritional levels.
“I was misdiagnosed with depression. [My doctor] never looked further into it. I often think how different my life would be at 28-years-old if I was treated for an eating disorder at 17,” she said.
The dismissal of her words as something trivial, encouraged the thoughts of continuous weight loss and failed to stop developing symptoms of the eating disorders that has since encompassed her life.
“I don’t know if it’s ignorance or denial, but I’m always tickled when I get a referral from a PCP,” Pope said.
Her welcomed surprise only shows the rarity of knowledge family care doctors have in catching symptoms early. Early detection in all disorders and diseases are critical for successful recovery.
Between her first and second inpatient admissions, Chappell developed bulimia as an extension to her anorexia.
“On days I had a binge, I would sit on the floor with the refrigerator door open and just eat and purge,” she said. “I remember one day taking 20 laxatives. The laxatives caused so much pain. I would wake up in the middle of the night feeling like my stomach would burst open saying I’ll never take them again, yet five hours later I’d get up and take them.”
Chappell’s eating disorders have affected the majority of her adult life. She believes a whispered question from her boss, “Do you have an eating disorder?” was a life-saving moment and a kick start into her recovery.
“I broke into tears saying, ‘Yes’. I felt a huge weight lift off my shoulders. I went from hiding my disorder for six years to finally having it out in the open and was able to make positive life changes. “
Chappell received treatment for her eating disorders in Western Psych’s inpatient program. She, however, didn’t feel an improvement in her recovery until she was admitted to the Remuda Ranch in Wickenburg, Arizona.
“I made my errors of not following my treatment plan at first, but once I started eating and being comfortable with feeling full, I gained [weight], and was very happy with the way I looked and felt,” Chappell said of her third admission into treatment.
Chappell believes that residential treatment was the most effective form of therapy she has experienced in her journey for recovery.
“I learned from my mistakes by seeing my therapist and going to the full day of group sessions we had Monday through Friday,” she said. “It was like school.”
Chappell says that Remuda Ranch reflected normalcy. She felt free to make errors and wasn’t confined to the harsh schedule of intense re-feeding programs that do not offer strong therapy to combat the rigid food plan.
“Another part to this treatment was an entire week that my family came out and joined in on the classes,” she said. “They learned so much more about eating disorders that they never knew. This made going home a lot easier because my family was more educated on what to say and how to handle my recovery process.”
Chappell had five years of up and down progress from the moment her friend initially asked that life changing question. She feels, however, that she is back to a normal life.
“I think I’m doing okay, but I don’t think ED’s voice will ever go away,” she said. I feel slips will always happen, but that doesn’t mean [I’ve] relapsed, it’s just a speed bump and tomorrow is another day.”
“When I was sick and struggling and really wanted to eat something, I couldn’t because the disordered thoughts stopped me from sitting down for even a second,” said 21-year-old Alisha, who did not want her last name used, during an email interview. “I was shaking. I remember I stood there clutching a stupid paper cup of water in my hand unable to do anything but stare at it.”
“I felt my eyes burn because there were three year olds eating and then there was me, tearful before a glass of water,” she continued.
Alisha, a university student from London, believes her fight with anorexia started at a young age. Particularly, after someone commented that she could go on a diet. Her perception of herself changed dramatically. She had once thought she was of a healthy size, but was then confronted from an alarming different perspective.
She quickly began to compare herself to others and feelings of condemnation over everything she was started to arise. Her daily thoughts revolved around excruciating guilt for eating even the smallest food or sitting down for a couple seconds.
“I just remember the thoughts,” she said. “Negative thoughts and ideas and then the suppression of hunger or not eating what I wanted to.”
As the years progressed, over-exercising, severe restrictive eating and substance abuse tainted her evolving future. She developed deficiencies of essential vitamins and nutrients as well as ulcerative colitis–the inflammation of the digestive track– due to extended periods of starvation.
Drug and alcohol abuse, depression, anxiety, obsessive-compulsive disorder and other mental illnesses are directly correlated to eating disorders and often serve as an extension to ED symptoms and characteristics.
In Alisha’s environment that spans several countries as well social media, she, as well as all other ED suffers interviewed, fully believe that society’s perspective on eating disorders is riddled with the stench of vanity and downplayed at first appearance.
“They are perceived as laughable, acts for attention, and often those suffering are considered a burden or berated for ‘bringing it on themselves.’ People are almost petrified of talking about it and if anyone shows disordered symptoms, they are often snapped at it to ‘get a grip,’ ” Alisha said.
The stigmatization that come with eating disorders are as quickly reversible as eating a few french fries and avoiding fashion magazines that strongly inhibit the motivation to get better. Why get help if my problem is so shallow, why get medical and psychological treatment when people are dying from real diseases such as cancer?
Eating disorders, no matter anorexia, bulimia, binge eating disorder or ENDOS, are mental disorders that interfere with every single avenue in an affected’s life. They are fueled from their pasts, traumatize the present and create a transparent future with the possibility of invisibility if the suffer does not pursue treatment.
“My friend passed away [from complications from his eating disorders]. I just realized that he looked like he was a skeleton. He died and I was more hurt than I have ever been before, but the selfish eating disorder hurt me more by saying ‘He’s won, see? He’s won and he’s thinner than you!’ And I remember it because I didn’t have any control at all,” Alisha said during an interview.
The thoughts those with eating disorders hear often mutate and poison any rational thought. The longer the body has been deprived of essential nutrients and the longer the body withstands trauma, the more powerful the eating disorder thoughts become.
“I hated my eating disorder for making me think so pathetically.”
“The truth is that an eating disorder is rooted in biological, psychological and social issues and is driven by heredity and genetics. One does not choose to develop an eating disorder,” said Anita Sinicrope Maier MSW, LSW, co-founder of NEDA and psychotherapist in private practice in Pittsburgh.
Maier has over 30 years of experience in the field of eating disorders. She has dedicated her life to lobbying in Congress for equal opportunity for all those with eating disorders to seek all deserved treatment, providing and dispersing ED education, as well as treating through private practice and at Footsteps for Recovery, an intensive outpatient program.
“The biggest problem that is inhibiting treatment is the lack of insurance coverage for intense inpatient or residential care.”
She believes that insurance and education (of professionals and the general public) issues must be solved in order create a more welcoming invitation for those in the midst of eating disorders.
Her efforts in Congress have provided the expansion of education and the mandating of treatment, however Pennsylvania has yet to fully feel the positive effects. The complexity of insurance policies and restrictions create a tricky mess to reverse and improve.
“In Western PA, most providers have not written residential care into their policies even though it is a gold standard of care and proven to be effective.”
Maier remains realistic of the fight she and other passionate advocates face.
“Awareness has improved but we have a long way to go before all people with these issues are adequately served,” Maier said.
According to NEDA, the development of eating disorders have increased every year since 1950, however there is a severe lack of funding for research and medical breakthroughs.
The National Institute of Health conducted a 2011 survey on research dollars, finding that the average research dollar spent on Alzheimer’s Disease was about $88 per affected person, Schizophrenia ranked second at $81 per person, while eating disorders only had $0.93 per person for research dollars.
Eating disorders have the highest rates of prevalence with about 30 million Americans affected in comparison to Alzheimer’s Disease’s 5.1 million. Despite this strong presence in the United States, eating disorders still receive scarce research funding.
With such insufficient funding for treatment programs and medical research, a cure seems far away.
“Money donated to non-profits is practically non-existen, so as we try to spread awareness, there is no monies to support it,” Maier said.
As the years pass and society develops, driven by social media and clustered with user opinions, public attitude towards eating disorders shifts, adapts and changes.
“Funders do not perceive it as a worthwhile or needy cause.”
The obsession with lifestyle products, the back and forth between ‘fat’ shaming and ‘skinny’ shaming, and continuation of loud mixed viewpoints all effects the environment in which eating disorders thrive in.
There is no single cause and no single cure for eating disorders. They are complex mental disorders that just like cancer and drug addiction, have detrimental consequences and penetrate through every single thing in the affected’s life.
Most often eating disorders originate as a demand for power in a person’s otherwise uncontrollable setting. They begin innocently enough, a small diet to combat growing insecurity, a small change to benefit their self confidence, however quickly become something that’s so out of control and so complex, and so far away from it’s actual creation.
Mental professionals such as Pope and Maier believe it is through heightened awareness, expansion of knowledge of symptoms, adequate research charity, widespread treatment and societal acceptance that eating disorders will start to lessen and soften in existence. It’s not an easy fight, it’s not a quick fight, but it’s a fight worth challenging.
When asked what was the most difficult part of recovery, a college student diagnosed with anorexia said:
“Yes, I can gain weight and become healthy looking, however the core of why I developed my eating disorder in the first place is so damn intricate, it feels like it will take a lifetime to reverse. I guess that’s why relapse is so normal in recovery. I’m not entirely sure why I keep going, but I do, and I still fight.”
If you or someone you know is struggling with an eating disorder, call the National Eating Disorder Association’s Helpline at 1-800-931-2237. They are here to help assist you in your journey towards recovery.
Jena Cormas, of North Huntingdon, PA, is a mass communication student graduating in summer 2016. Her unrelenting passions include creative writing, exploring fashion, and over analyzing song lyrics.