She fought to save her child from an eating disorder. Now, she combats the misconceptions.

SAN DIEGO —

Nine years ago, JD Ouellette nearly lost her daughter Kinsey, then 17, to a near-fatal bout with anorexia nervosa. Kinsey has since recovered, but her mom is still in the trenches, helping connect other San Diego parents and children with the tools and strategies they’ll need to win their own battles against eating disorders.

According to the National Eating Disorders Association, EDs will affect about 20 million women and 10 million men in America during their lives. These illnesses include anorexia and bulimia nervosa and binge-eating and avoidant-restrictive food intake disorders. They can affect people of all ages, ethnicities and socioeconomic groups. They can show up in children as young as 7 and are particularly common in women ages 15 to 24. Unfortunately, only about 10 percent of people with eating disorders ever receive treatment.

Ouellette, a 57-year-old mother of four from Scripps Ranch, said parents may fail to recognize the signs because of widespread myths and outdated information online. New research over the past 20 years has dramatically changed what scientists know about these diseases and how to treat them, so Ouellette said getting this new information out to families can save lives.

“What I tell parents is to ‘trust your Spidey-sense,’” said Ouellette, referring to Spider-Man’s hypersensitivity to danger. “If you feel like something is wrong, particularly after reading about it in the Union-Tribune, get an evaluation right away.”

JD Oullette stands in front of the the UC San Diego Health Eating Disorders Center in La Jolla.

In 2012, Kinsey Ouellette went through treatment at the UC San Diego Eating Disorders Center for Treatment and Research in La Jolla, which is widely recognized as one of the top eating disorder research organizations in the nation. JD Ouellette said she was so grateful for her daughter’s recovery that she paid it forward by volunteering to mentor others parents of children beginning treatment. When the college where she worked as an administrator closed in 2018, she devoted herself full time to her new vocation.

She now runs her own coaching service for parents and patients with eating disorders; serves as a parent mentor on the University of California San Diego center’s parent advisory council; is the director of mentorship for EQUIP, a 2-year-old all-virtual eating disorders treatment program in San Diego; is the co-founder of the International Eating Disorders Family Support network and World Eating Disorders Action Day; and is a former board member for Families Empowered and Supporting Treatment of Eating Disorders (F.E.A.S.T.).

Ouellette said most Americans and surprisingly many pediatricians don’t realize that eating disorders are not a personal “choice,” but a hereditary, genetic neurobiological disease. Although they can be triggered by social or environmental factors (like body-shaming or the media-driven promotion of thin body types), they should be understood as complex medical and psychiatric illnesses.

“One of the biggest things I learned is that everything I thought I knew about EDs was flat wrong,” she said. “I was a teacher with a master’s degree and I had it wrong.”

Decades ago, the traditional treatment for young people with serious eating disorders was to remove them from the family home — or a “parent-ectomy” as Ouellette calls it — because parents were seen as the root cause of the problem. Now, Ouellette said, research has proved that the most effective technique is called family-based treatment, where a patient’s family are part of the trained “team” who help guide the patient back to physical and emotional health in their own home.

“No family causes an eating disorder but every family has to change to fight one,” Ouellette said. “Think of it like this: Your family’s operating software doesn’t have the ED-fighting patch in it so you have to upgrade your software to the version that fights ED.”

Ouellette said there are common temperamental characteristics in youths who have these disorders. They are often great students and high-achieving athletes and artists who work hard, are inwardly motivated and accustomed to practicing to perfection.

“Those are very valuable skills, but once you’ve developed an ED, that same discipline applies. There’s a light and a dark side to those skills,” she said.

That was the case for Kinsey, who was a top student and high school athlete. After graduating, she and a couple friends decided to do a “healthy eating makeover” to avoid the “freshman 15″ pounds students often gain in their first year of college. But within two months of starting the makeover, Kinsey’s health became so precarious that her family pushed her to go into treatment at UC San Diego.

“Some people have a slow burn, but she was way off the cliff. It was astonishing,” Ouellette said. “She has said many times in the years since that had we not interceded when we did, she would have been dead within a couple of months.”

“Think of their disorder as a person. When your child is yelling, screaming, throwing things, refusing to eat, negotiating meals, whatever it may be, you are not witnessing or dealing with your actual child. You are face to face with the personification of their disorder.”

Kinsey, JD Oullette’s daughter, as she wrote in an essay about her eating disorder

Ouellette said that family-based treatment works, but it’s not easy. Marriages can fall apart and parent-child relations can be permanently frayed without the support of a comprehensive treatment program like that at UC San Diego, Rady Children’s Hospital in San Diego or EQUIP.

“If a plate of food is like a plate of snakes and spiders for a child, they will act appropriately, and that is hard on everyone,” Ouellette said. “For parents, it’s really easy to feel like it’s you against your kid, but it’s really you against the eating disorder that’s in control of your kid.”

In an essay Kinsey wrote about her struggle with anorexia for F.E.A.S.T., she said that children in the grips of an eating disorder will say and do almost anything if they believe their parent is standing in the way of their weight goal.

“Think of their disorder as a person,” Kinsey wrote. “When your child is yelling, screaming, throwing things, refusing to eat, negotiating meals, whatever it may be, you are not witnessing or dealing with your actual child. You are face to face with the personification of their disorder. This hate comes from a losing eating disorder, so just remember that the more hate you feel, the better job you are doing.”

Treatment and recovery outcomes vary, but Ouellette said that in most cases, aggressive treatment can solve the disorder in three to four months, but it can take one to three years for full recovery. Relapse is common. Some studies showing a relapse rate of 36 percent for anorexia patients and 35 percent for bulimia patients.

Ouellette said she advises parents who are struggling through treatment with their child to remain focused on the end goal and stay on track.

“It’s important you approach this with compassion, consistency and with the knowledge that all of what you’re doing is protection, even if it can feel, or seem filtered to feel, like punishment,” she said. “Feeding our children and monitoring exercise and other behaviors to attain and maintain their optimal physical and mental health is our right and responsibility as parents.”

Common warning signs of an eating disorder

Sudden weight loss or gain

Disordered eating, such as habitually skipping breakfast or lunch
Participating in fasting challenges or keeping track of everything they eat in a day
Sudden change in mood or socializing habits
Self-esteem issues about body image
Decision to go vegan or vegetarian
Anxiety or depression
Exercise compulsion
Food rituals (like excessive chewing or not letting foods touch each other)
Girls experience menstrual irregularity or stoppage
Boys focused on bodybuilding and body fat
Dizziness or fainting
Stomach cramps or acid reflux
Sleep problems
Cuts and calluses across the top of the finger joints (from inducing vomiting)
Yellow skin (from eating too many carrots)
Difficulty concentrating
Dry skin and hair

— Source: National Eating Disorders Association

Self-care tips for parents of a child with an eating disorder

Learn psychoeducation, which is therapeutic intervention for patients and family members to understand and cope with illness.
Work with providers to give you the same skills you are teaching your child.
To avoid conflict, both parents should stay on the same page when addressing their child’s treatment.
Divide responsibilities in your family, ideally so the father can take a more active role.
Engage in bonding activities with your child in treatment.
Do guided meditation for at least five minutes a day.
Learn to play a musical instrument.
Get outside and take a walk.
Avoid activities that cause you stress.

— Source: JD Ouellette