Eating disorders are frequently accompanied by shame, secrecy and loneliness. But the patient isn’t the only person who experiences intense emotional distress due to the illness — the people closest to them suffer alongside their loved ones. The mothers of children with eating disorders frequently find themselves in no-win situations as they try to simultaneously offer unconditional support and tough love to their children — often while navigating a complicated, frustrating health care system and insurance companies that still don’t take the illness seriously.
Despite being one of the most common mental illnesses, eating disorders such as anorexia, bulimia and binge-eating disorder are still often misunderstood by the public and even members of the medical community itself. Individuals with eating disorders are frequently labeled as “vain” despite the abundance of evidence that the illness is a coping mechanism for underlying mental health issues, including anxiety, depression and post-traumatic stress disorder.
Breaks in school & relationships
Sofia, now 20, tells SheKnows that she began experiencing depression and anxiety when she was around 9 years old, and her eating disorder symptoms first emerged when she was 14. She spent her high school years in and out of hospitals and treatment centers — but the day she turned 18, Sofia signed herself out of her current treatment program.
Her mom, Miryam, urged Sofia to take a gap year to focus on her recovery, but she’s passionate about academics and was eager to begin college at American University. Just two months into the semester, Sofia was hospitalized due to severe physical complications from her eating disorder. When she signed herself out of treatment against medical advice once again and continued to resist recovery, Sofia and Miryam’s relationship became strained.
“It’s very painful, and it’s a pain that sometimes you’re not allowed to express because you’re thinking, ‘I don’t want to add to my daughter’s stress or pain. I don’t want my daughter to see me upset. I don’t want my daughter to see me cry. I don’t want her to see that I’m struggling and suffering too,'” Miryam says.
Miryam tells SheKnows that finding her own therapist was something that helped her a great deal, and it’s something she recommends to other parents who are in a similar situation. “You have to take care of yourself,” Miryam says. “You have to take care of yourself because it’s very hard, and you can get mentally sick and depressed. So it’s important to find help and take time just for you.” She also says it’s crucial to find therapists, medical doctors and psychiatrists who are specifically trained in eating disorders.
Nanette, whose daughter Maggie developed an eating disorder when she was around 12, also emphasizes the importance of finding support. “They say you’re only as happy as your saddest child is, so it’s been rough,” Nanette tells SheKnows. Thanks to The Eating Disorder Foundation in Denver, Colorado, she and Maggie’s dad were able to find a community of parents.
“My husband and I are really involved. It’s a space where we’re able to talk to other people and cry,” she says. In addition to finding solace in one another, the parents exchange advice and recommendations about which therapists and treatment centers have been most effective for their own children. This is how Nanette learned about a residential treatment program that helped Maggie a great deal.
Maggie and Nanette also bring up another important point: The trajectory of Maggie’s eating disorder began with bingeing as a way to cope with her depression, so she initially gained weight. She recalls that her parents expressed concern, but there wasn’t a sense of urgency and no action was taken by doctors at the time — something that’s incredibly common because so many people, including members of the medical community, associate eating disorders with being dangerously underweight. When she was 14, Maggie’s symptoms shifted to restricting and purging. She lost weight and was underweight when she was admitted into her first treatment facility.
“We just thought she was super-depressed. Doctors made no mention of an eating disorder,” Nanette recalls. “It wasn’t until she lost weight that they started being concerned. And I feel bad that she had to lose weight in order for us to recognize that she was suffering.”
For parents who are taking care of children with eating disorders, Miryam advises that it’s important to be strong and firm when it comes to enforcing rules about a meal plan but you also need to be flexible when your child just doesn’t want to talk about it. “The caregiver has to stay strong with rules. You have to be strong but on the other hand flexible,” she says. “You have to know the person who’s sick to understand because sometimes she’ll want to be alone and not want to talk, and you have to understand this.”
Don’t give up
It’s also crucial to never give up. Relapse is common, and the road to recovery is nonlinear for the majority of patients. Some doctors will tell parents that recovery simply isn’t in the cards for their children — and that’s a major red flag that you need to find a new doctor, because even patients with the most severe eating disorders are capable of recovery.
“Sometimes, I wanted to give up because my frustration was so deep,” Miryam recalls. “Sofia was dying; it was horrible to go to the hospital to see my daughter hooked up to a feeding tube. And she was refusing to eat, so my frustration was horrible, and sometimes, I wanted to give up, and then we’d say, ‘No, we have to fight.'” Doctors told Miryam that Sofia would be a chronic patient and there was nothing she could do, but Miryam refused to accept that diagnosis.
Because the recovery process is often so long and frustrating, Nanette emphasizes the importance of patience. “Give a lot of hugs and be patient,” she advises the parents of children with eating disorders. “I don’t want our whole life to become the disease, but we’re really trying to advocate education and understanding and that everybody has their own path. But you need support. If my child had diabetes or cancer, I’d want that support too. But I’m not afraid or embarrassed anymore. Some people don’t know what to say, and I just look at them and say, ‘You probably know someone.'”
Today, Sofia is enrolled in college at Rutgers and is healthier than she ever imagined she would be. For the past eight months, she’s adhered to her meal plan, maintained her weight, and challenged herself to work as hard on recovery as possible. Sofia’s living on her own and eating things she “could never in a thousand years imagine eating” before.
Rutgers is located just 40 minutes from Miryam’s house, so she still can rely on her mom’s support when she needs it. For example, Sofia had just gone through a tough week before she and Miryam spoke to SheKnows — so she called her mom to tell her she wasn’t doing well, and Miryam picked her up so she could spend the weekend at home, where she knows she can count on her mom’s support to help her get back on track.
Maggie, now 19, is also doing better and recently moved out of her parents’ home. Although she says it’s been difficult in a lot of ways, she tells SheKnows that she has applied to college in Colorado with the goal of beginning in the fall semester. Both Sofia and Maggie have faced many challenges and setbacks throughout treatment, but they’re both proof that recovery is possible — and that supportive parents play a crucial role in their child’s recovery.
But as Miryam and Nanette emphasize, the best way to be supportive is to ensure that you’re taking care of yourself as well, whether it’s through a therapist or a support group. Watching your child suffer from an eating disorder is one of the most painful things a parent can imagine, and no one should go through this alone.