Former ballerina, social worker, & research associate who battled anorexia nervosa for 23 years, Rhode Island
Former ballerina, social worker, and research associate, Heather, 43, Rhode Island, has served on the Board of the National Eating Disorders Association (NEDA) for the past 7 years. She was diagnosed with anorexia nervosa at 12 years of age. However, she recalls developing a disordered relationship with food from the tender age of 7.
Heather spent 23 years battling her self-described “psychiatric cancer”. Anorexia nervosa was an insidious disorder which she challenged, endured, and thankfully, survived over this extended period.
Armed with a family history of eating disorders, Heather maintains ballet was the environmental “trigger” to her genetic “loading” that fueled her anorexia nervosa.
The ballerina and Honors student spent many years in pursuit of perfection. Her eating disorder provided her with a false sense of control in her otherwise overwhelming world.
Given her first-hand experience with anorexia nervosa, Heather chose to participate in the Anorexia Nervosa Genetics Initiative (ANGI) in 2010, in which UNC researchers and their partners identified both psychiatric and metabolic causes for anorexia nervosa.
Today, Heather has chosen to participate in the Eating Disorders Genetics Initiative (EDGI) – the world’s largest genetic research study of eating disorders ever performed. The study aims to identify the hundreds of genes that influence a person’s risk of developing anorexia nervosa, bulimia nervosa, and binge-eating disorder, to improve treatment, and ultimately, save lives.
This is Heather’s story.
Ballet was the environmental trigger to Heather’s genetic loading for anorexia nervosa.
Heather was introduced to ballet at a pre-professional dancing company, where, together with her peers, she was weighed every day, and constantly critiqued by her ballet coaches about her body weight and shape. Corrections’ to dance movements were often tied to how your body appeared.
“Irrespective of our height, our weight was measured regularly, scrutinized, and compared with our peers.”
“An unspoken goal was to prevent our bodies from developing with puberty. We were encouraged to restrict, dance for multiple hours a day, and continue to sweat off any water weight at home via wearing plastic shorts.”
“I have pictures taken of me in the same position at 12 and 17 years of age, and I look exactly the same,” said Heather.
Heather spent countless years doubting herself and being bombarded by an eating disorder voice that was constantly yelling at her to restrict and over-exercise, like a dictator. She battled obsessive “checking behaviors,” such as looking in the mirror, posing certain ways, wearing certain types of clothing, and weighing herself several times a day. On various occasions when she was unable to engage in these checking behaviors, she would feel distressed and anxious.
Often completely overwhelmed by her emotions, Heather used her eating disorder to numb her feelings.
“By starving myself, I narrowed my focus to just food and weight, and therefore I did not have the concentration span to deal with anything else. Anorexia seemingly calmed me by promising me that if I had the ‘perfect’ body, then everything else would just fall into place,” Heather said.
Living with anorexia has had a profound impact on several areas of Heather’s life, even after her recovery. She developed osteopenia, a weakening of the bones, at 22 years old, years younger than the typical onset. Correspondingly, she sustained several severe bone fractures in the years after. Her relationship with her family and friends were also significantly strained by her disorder, and it took a while to repair these relationships during her recovery.
Heather had a genuine fear of disappointing people, so she strove to be the ‘perfect’ girl who lived up to, or exceeded, the expectations of herself and others. This included not complaining about anything, whether it was physical or emotional pain.
“In turn, my body (through anorexia) expressed what my words could not say; “I am tired, sick, emaciated, injured, in pain, and desperately in need of help,” said Heather.
Heather was subsequently admitted for a year of psychiatric inpatient treatment for her anorexia, depression, and anxiety on two occasions. The first was after she graduated from high school in 1994, and transitioned to be a professional ballerina, due to pressure from her coaches. The restriction and over-exercise lasted for a few months before she collapsed and returned home for emergency hospitalization.
The second admission was after completing her undergraduate program in 1999, and after transitioning directly to a clinical psychology doctoral program, due to pressure from her professors. Similarly, the pattern of anorexia collapse and emergency hospitalization repeated itself.
“In both cases, I had tried to express my desire to take a different path, but the authority figures in my life overruled me. Thus, my anorexia ‘spoke’ for me,” Heather said.
She lived in denial for 23 years about the seriousness of her anorexia. However, she did acknowledge that it was robbing her of her sanity, and overall quality of life. When she was 35 years old, on February 16, 2012, Heather decided to begin her journey to recovery.
“The day of my new reality, I woke up and realized that if I did not change anything, then my pattern of restriction, over-exercise, weighing myself, and sacrificing everything in my life for the goal of being thin would continue forever. I made a decision that day to finally recover from my eating disorder.”
“With my support bench of eating disorder specialists, including my primary care physician, therapist, and nutritionist, I have been able to separate the eating disorder voice from my own ‘essential Heather voice’ in my recovery.”
“While the words and actions all come out of the same body, acknowledging there is a biologically-based psychiatric disorder that is controlling my seemingly incomprehensible thoughts and behaviors, has allowed me, and my loved ones, to know that is not the ‘real’ me,” Heather said.
Heather has chosen to dedicate much of her professional career towards researching and advocating for others living with ED. She has served on the Board of the National Eating Disorders Association (NEDA) since 2013, has had a Faculty Research Associate appointment at Brown University School of Public Health since 2016, and a Faculty Associate Specialist appointment at the UCSD Eating Disorders Center for Treatment and Research since 2018.
Heather firmly believes genes play an important role in one’s predisposition to developing an eating disorder, given her family history of these psychiatric disorders. Today, Heather is excited to be participating in the EDGI research study, which follows the ground-breaking advances made recently through the collaborative Anorexia Nervosa Genetics Initiative (ANGI), in which UNC researchers and their partners identified both psychiatric and metabolic causes for anorexia nervosa.
“It’s important to share your experience of living with an eating disorder, to reaffirm to others that they are not alone. Speaking out increases the sense of community, raises awareness, decreases stigma, and brings attention to the need for further funding, research, and treatment. Research, including this study, is essential to further our knowledge about ED, and provide insights into novel treatments,” said Heather.