Mom who has waged a more than 30-year-long battle with anorexia nervosa, NEW JERSEY
Mom-to-3, Amy, 50, New Jersey, has been living with anorexia nervosa for more than three decades.
At age 17, Amy and her friends chose to experiment with a fad diet. This diet reportedly “flipped a switch” for Amy, resulting in her hospitalization and subsequent diagnosis with anorexia nervosa a year later.
Amy describes her experience of living with anorexia nervosa as continuous torment, day in, day out. Whenever striving to steer herself towards recovery from her disorder, Amy tragically finds herself crippled by severe anxiety and depression.
Given her own personal experience, she is convinced genes predispose individuals to the development of an eating disorder.
Amy has therefore chosen to participate in the Eating Disorders Genetics Initiative (EDGI) research study – 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 Amy’s story.
When commencing a fad diet at the age of 17, Amy initially experienced euphoria over her subsequent weight loss. Her weight loss however, triggered her disordered eating behaviors, which eventually took over her life.
A year later, Amy was hospitalized and formally diagnosed with anorexia nervosa by a primary care physician.
Amy has since spent more than 30 years battling this insidious disorder. Every event in her life, from minute, to milestone, has been marred by her anorexia nervosa.
“My college years are a blur. My consistent need for intensive treatment meant I had to withdraw from college on several occasions. I had few, if any friends at the time, because I isolated myself to avoid social situations that may have involved food, or interfered with my rigid routines,” said Amy.
“My eating disorder has been a challenge that has always, and continues to remain, present – from my wedding day, to the birth of my children, to vacations and every single social event I attend.”
“I both want, and am petrified by food. I want friends, but avoid forming friendships because they could involve going out to eat. I feel hunger, but deny it, or delay eating if it isn’t yet ‘time’ to eat,” Amy said.
“I’ve often found myself almost in tears at the grocery store because I feel so overwhelmed by all of the options available.”
Amy has spent many years undergoing myriad treatments for her anorexia nervosa, from outpatient counselling, to acute medical hospitalizations. During this period, she has also witnessed many episodes of “quasi-recovery”, a state she is currently striving hard to move beyond.
“These are times when I am functional. When my weight isn’t at a dangerous place, and I’m eating relatively well. But mentally, I’m just as tormented by the eating disorder-related thoughts.”
“I’ve seen psychologists, social workers, psychiatrists, and nutritionists, but made little progress. Despite having a Master’s degree in social work, and being a certified high school teacher, I’ve been unable to maintain employment due to my recurring need for treatment,” said Amy.
“I’m currently seeing a recovery coach, a person with lived experience who has fully recovered from their eating disorder, which has been the most helpful support I’ve received to date.”
Amy is acutely aware of how her eating disorder has deeply impacted, not only her own life, but the lives of her loved ones.
“What haunts me most, are the lasting scars and trauma my children have had to endure from watching me repeatedly deteriorate before their eyes at the hands of my eating disorder, and then having to deal with me being away for months at a time to undergo treatment,” Amy said.
Today, Amy 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.
“Having lived with an eating disorder for more than 30 years, and endured so much pain and time lost to the illness, I have chosen to participate in this study, with the hopes of preventing my children (and future generations) from experiencing similar pain.”
“I encourage anyone eligible to participate in the EDGI study, to do so. The information to be gleaned from this research can greatly improve our understanding of what causes eating disorders, and provide much needed data for more effective early interventions and treatments,” said Amy.
Importantly, Amy urges anyone living with an eating disorder to reach out and seek help, especially in the current COVID-19 climate.
“While I know how much the eating disorder part of your brain doesn’t want you to tell someone, the disorder thrives in secrets and lies,” Amy said.