Health. "We are helpless": anorexia, bulimia... the hard fight of families

"My 21-year-old daughter has been anorexic since she was 13. Eight years later, she's not completely cured. It comes and goes. It's destructive," confides Anne, from Villeurbanne (Rhône). Like her, parents whose children are affected by eating disorders (EDs) feel a sense of helplessness. World Eating Disorder Awareness Week , which begins this Monday, is an opportunity to reach out to families dealing with anorexia, bulimia, or binge eating disorder (see box).

The first difficulty for parents is becoming aware of the illness: "A teenage girl with anorexia, for example, will skip meals when her parents aren't there and will continue to eat dinner with them. And since they see her every day, they won't necessarily notice her weight loss," notes Dr. Renaud de Tournemire, vice-president of the FFAB (French Federation of Anorexia and Bulimia). The same goes for bulimia. "The person's weight will remain stable if she makes herself vomit or skips meals." As for binge eating disorder, while it generally causes weight gain, "it can be perceived as an obesity problem, for example, when that's not the problem," says the doctor.

There can also be a form of denial among parents, according to Nathalie Godart, a child and adolescent psychiatrist at the Fondation santé des étudiants de France (FSEF): "This illness scares them so much that they don't see it. It's a defense mechanism. However, the longer the delay between the onset of difficulties and the start of treatment, the longer it will take for treatment to work."

And even when parents have identified the problem, they don't necessarily know which professional to turn to. Should they consult a general practitioner, a psychologist, a psychiatrist, or a nutritionist? "You can't imagine the number of calls and emails we receive from parents asking for contact information for caregivers," says Philippe Gaubert, assistant secretary of the National Federation of Associations Related to Eating Disorders (FNA-TCA).

"Finding a way into care isn't always easy," confirms Nathalie Godart. And when a child does see a doctor, the doctor doesn't necessarily make the right diagnosis. "Whether you're a pediatrician, a general practitioner, or a psychiatrist, we're not very well trained in eating disorders ," says Renaud de Tournemire. Anne witnessed a delay in diagnosis for her daughter: "The general practitioner found her depressed, but the psychiatrist who was treating her didn't see anything. We were the ones who turned to the eating disorder reference center in Bron."

It's also difficult to find a care facility when hospitalization is necessary. "We had to go through a private clinic," says Anne. The same problem applies to Alexandra's daughter, from Montandon (Doubs), who suffers from anorexia: "There were no facilities in our area. So she's already been hospitalized in Lyon and this year in Lille (the city where she's studying). As parents, we're helpless; we have to manage on our own to find facilities."

During their child's treatment, parents also need support from healthcare professionals. First, to relieve guilt: "When you're a parent, you feel responsible, but even more so when your child suffers from a psychiatric disorder. You constantly wonder what you did wrong," notes Nathalie Godart.

Parents also need daily guidance. "We help them rebuild a healthy eating environment at home: meals should be shared, structured, and not stretched out over time," insists Nathalie Godart. "We encourage them to be firm, without getting upset. We also give them clear instructions regarding mealtimes: the child doesn't do the shopping or cooking. And you have to be there for them for an hour after the meal," adds Renaud de Tournemire.

Professionals also help them better understand the illness : "Some parents think there's no cure for eating disorders. Others think they can be gotten rid of very quickly," notes Nathalie Godart. "However, adolescent anorexia can be cured in 70-80% of cases within 2-3 years, and for bulimia or binge eating disorder, it's more likely to be 5-8 years," says Renaud de Tournemire.