These medical conditions not only affect the people who have them, they take an emotional toll on their families and friends - many of whom experience their own personal pain from watching an eating disorder slowly destroy their loved one and may feel powerless in trying to help.
"Most people who have not had their lives touched by an eating disorder dismiss them as not worth worrying about," said one parent of a daughter with an eating disorder. "It is like trying to dismiss a tornado tearing through your home and your heart, tossing everything in its path around as if it were weightless and worthless. I have been through both. I would choose the physical tornado any time."
Eating disorders are serious illnesses with a biological basis that are influenced by emotional and cultural factors. Researchers are discovering that certain genes appear to increase susceptibility to an eating disorder, much like with alcoholism or depression.
While eating disorders cause physical devastation to the individual, they also wreak emotional and financial ruin on the entire family. Marriages are strained. Siblings feel pushed aside. And because insurance rarely covers treatment, some families are forced to deplete savings accounts or take out second and third mortgages to provide their loved ones with the care they need.
Compounding the problem, according to NEDA, is the stigma associated with eating disorders, which keeps some individuals suffering in silence. Due to a lack of education and the "behind-closed-doors" nature of the conditions, some family members, friends and health care professionals fail to recognize the signs of an eating disorder or the full extent of the risks involved.
"Eating disorders treatment cannot be successful if it starts with an aspirin and a Band-Aid," said Kathy Benn, whose 19-year-old daughter Shelby Starner died as a result of an eating disorder. Starner had been treated for eating disorders for 26 months and was turned away from in-patient care because she was "not sick enough."
"We must address symptoms with aggressive, life-threatening seriousness," Benn said. "Forcing sufferers to fail their way up to intensive treatment is wrong-headed behavior that gives the illness an advantage and serves to waste valuable time and life."
NEDA provides support for families affected by eating disorders through its Parent and Family Network, which serves as a clearinghouse for up-to-date information about treatment, resources and advocacy.
"Building an informed and involved community helps families know they are not isolated, their problems are not as unique as they once thought, and that there is hope," said Lynn Grefe, chief executive officer of NEDA.
