The story is largely unfinished. It is told through the eyes of a sister trying to find hope in a younger sibling's lifelong battle with an eating disorder. On September 9, 2013, my sister lost her battle. She died at age 36, just seven days from her 37th birthday. Her death cannot be the ending to the story. For more than 18 years our family watched helplessly as our loved one struggled with anorexia and bulimia, moving from one psychotherapist, nutritionist and inpatient facility to the next without success. The tragic consequences of the disordered life were evidenced by a long list of medical problems. Years of abuse led to--- multiple surgeries and the removal of the small and large intestine (colectomy), early stages of liver disease, digestive problems, dental erosion, limited cognition and partial brain damage. Frequent trips to the hospital were required after doctors believed her heart would stop from behaviors resulting in starvation and electrolyte imbalance. On one occasion, she was admitted into an eating disorder clinic and within a month they discharged her and claimed she was untreatable because she was refusing their treatment. Their departing words, "we recommend she move to a higher level of care with inpatient hospitalization." Jenn ignored their recommendation; she believed she could get better "own her own." By January 2010, Jenn's condition had worsened. She was admitted to her 5th inpatient program at a residential facility in southern California. After 81 days of treatment the insurance company denied the claim and she was discharged from the facility prematurely. A doctor representing the insurance company wrote the following, "There is no evidence that you have a severe impairment in your functioning due to a psychiatric illness...there is no evidence that you would deteriorate outside of a 24-hour residential facility..." Three days later, while at home, Jenn fell unconscious after a violent binge purge episode. Jenn followed a cycle of near death moments that would land her in the emergency room week after week. Months passed before Jenn was admitted to a medical stabilization program in another hospital out of state. Once again, the insurance company denied the claim. According to the insurance company, Jenn's illness was a "chronic condition" and therefore they would deny further treatment.
Chronic indeed! Watching a loved one trapped in this cycle is maddening. Since March 2012, Jenn experienced seven ambulance rides to the emergency room, six stays at inpatient treatment facilities, and four hospitalizations in the intensive care unit. In one instance, Jenn slipped into a coma after drinking excessive amounts of water (hyponatremia). Late 2012, the court appointed me as conservator of my sister. The court documents proved to be meaningless slips of paper that had no impact on my ability to save my sister's life. After her most recent hospital stay, doctors ordered a permanent feeding tube. Jenn ignored the orders and asked for the tube to be removed. Her case was reviewed by a hospital ethics committee and after weeks of deliberations, Jenn was discharged and allowed to return home without a feeding tube. The doctor told our family there was nothing else we could do to keep her alive and we needed to prepare for her to die within a matter of weeks. Jenn's delusion remained and she had convinced herself she would survive and prove the doctors wrong. Her illness had convinced her of so many untruths. It was devastating to watch her final days.
I'm the older sister and I refuse to let the story end with such a predictable finish. I'm committed to making a change because in a small way I may have helped author this story unknowingly, from the beginning. In a letter written by my sister she reveals some external forces that influenced her in the earliest stages of her disordered behavior. Jenn wrote:
"At age 17 I wanted to emulate the waif-like models seen in fashion magazines. A friend told me about a drug that could help me lose weight. I tried cocaine and loved the weight loss. Eventually I quit drugs and gained weight. Unhappy with my heavier body, I sought ways to lose weight again. I began mimicking my sister's restrictive eating habits. I watched her consume one apple a day and a pint of rice while maintaining a 4 hour daily exercise routine. It was working for her so I thought I'd try. I too began restricting food intake and exercising and I sought to be the best anorexic in the world. My eating disorder and desire to achieve the skeletal frames seen in magazines and on television grew wildly out of control. I began abusing laxatives and enemas while limiting my food intake. I would wake at 4 AM, drink coffee and smoke a cigarette. I would go to the bathroom for 2 hours after ingesting laxatives, enemas and punching my stomach with clenched fists; trying to knead and push my guts around. I became obsessed with making sure any food I ate quickly left my body. After my bathroom routine I would go out on a long, intense run. My ritual included starvation, laxative/enema abuse, kneading, running and more starvation. I began fainting everywhere; frightening complete strangers who would watch me collapse. It didn't change my behavior; my pursuit for thinness was relentless. After some time, my body literally shut down..."
As I read her words, I can't help but think, if only I knew then what I know now; I may have made better choices about the message I was sending to my sister about body image. I was so preoccupied with my own disorder that I didn't realize my behavior was being imitated by a sister who only knew how to look up to me. Had I realized my influence I would have changed my actions.
Studies suggest body image is influenced by three factors: Peers/family, media and personality/psychology. It's important to understand our influential role in shaping body image. Conversations with peers or family members about dieting, celebrity idolization, or even self-critical talk all have the capacity to influence body image. Our behaviors such as restricting food intake or buying unnecessary aesthetic plastic surgery procedures may also have an influence on body image. We all want to look good, but what price are we willing to pay? For me, the costs outweigh the benefits when I consider the body image construct my kids will inherit if I engage in the vanity trap. Without saying a word to our sisters, our peers or our daughters, what message are we communicating about body image acceptance?
Real Body Story emphasizes the development and maintenance of healthy lifestyle choices for girls to imitate. Its purpose is to raise awareness about the influence mothers, sisters and peers have on disordered eating and body image. Did you know that girls are 10-20 times more likely to develop an eating disorder if their family member has disordered eating?
The story gives women a new voice that communicates body image acceptance. Women who share a Real Body Story are helping give shape to the collective story we can tell our children about what's real and what's important in life.
Please help us finish the story...
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