In a heartbreaking final summary of her loss, Yehudit Bauman expressed the pain of saying goodbye to her daughter, former Israeli model Karin Bauman. “I can’t breathe,” said Karin Bauman’s mother, a statement that speaks to the immense grief left behind by the loss of a young life that had been a long and grueling struggle.
Karin became an important symbol as she struggled for years with this terrible disease, which is characterized by extreme malnutrition and can be fatal. Her mother, Yehudit, has cared for her immensely and has been by her side throughout her difficult journey. As the incidence of anorexia nervosa grows among the younger generation, the disease itself is increasingly alarming the government.
The challenges posed by the disease extend beyond the individual and his or her immediate caregivers, profoundly affecting families and highlighting systemic issues. Even though cases are on the rise, especially in the wake of the coronavirus pandemic, the wait for critical treatment and hospitalization can be months. This reality forces many parents to fight an uphill battle on two fronts: against the relentlessness of eating disorders themselves, and against the healthcare system to ensure access to appropriate treatment.
The human cost of these delays and systemic limitations is profound and reverberates through the lives of countless families. Shirley Trello, whose 16-year-old daughter, N, has been struggling with anorexia for three and a half years, speaks candidly about the strain on their relationship. Shirley explains that what was once a wonderful relationship became difficult as she found herself in constant conflict with her daughter over her greatest fear: eating. Looking back years later, Shirley noted her gratitude for her mother’s persistence and admitted that “at the time, that wasn’t the case.”
Another mother, Orit Meoded, shared her experience with her 19-year-old daughter, B., who also suffers from an eating disorder. Orit recalled that their family went through a major crisis. Even during B.’s hospitalization, the level of care required was high, requiring her parents to be with her around the clock. While describing the situation as “like we were having a baby,” Olivet added emphatically, “But this was a 17-year-old girl who needed to make sure she was fed and happy, and dealing with outbursts of anger and pain, and as a parent, you’re just trying to help her out.
The constant fear of parents is palpable. Ouellette talks about the sleepless nights spent with B, relentlessly checking to see if she was breathing because she was afraid her daughter’s heart rate might drop. “It’s a constant sense of fear and helplessness,” she explains, emphasizing the feeling of being adrift when a child is diagnosed and the parents are left without proper guidance. The sad reality is that children waiting for treatment can become increasingly weakened and the risks are ever-present.
B., the second of Orit’s four children, was diagnosed with anorexia at the age of 16. The onset was sudden and shocking. B., who suffers from asthma, began to cut back significantly on her eating after an asthma attack. Although she initially cited bacteria in her stomach as the reason for her eating difficulties, the dramatic weight loss was indisputable, and in just a month and a half she lost about 20 kilograms (44 pounds), leading to fainting spells at school and obvious weakness. Realizing the severity of the problem, the pediatrician referred them to the emergency room, where B was immediately diagnosed with anorexia nervosa.
After two and a half weeks of hospitalization, Orit immediately began searching for appropriate ongoing treatment. Despite the diagnosis and referral, the wait for treatment was long, initially four months. Noting that it has gotten worse, Orit says the current wait time is said to be six to seven months, which she describes as “crazy.” This wait time places a huge burden on parents.
“During the waiting period,” Orit emphasized, ”as a mother, you have to keep your daughter alive. This involves making sure your daughter doesn’t have a heart rate spike in her sleep and helping her cope with depression. During this agonizing wait, B. needed to make occasional trips to the emergency room when she didn’t feel well to be treated for specific problems, but then she could be discharged.
When the opportunity for treatment finally presented itself, B encountered another obstacle: the center required her to be able to eat before she could begin treatment. For weeks, Orit insisted on taking her daughter to a nutritionist to help her start eating. After about three months, B.’s situation took a drastic turn for the worse; she began self-harming and was transferred to a psychiatric hospital.
The week-long stay in the psychiatric hospital proved to be extremely traumatic for B.: B. told her that she saw other patients and, unfortunately, learned from them “how to hurt yourself or how to vomit.” The emotional scars were obvious. Orit recounts a recent conversation in which B dreamed that she had been forced by a cab to a psychiatric hospital, tied up and screaming “Mommy, no!” . With tears streaming down her face, Olivet could only stand by helplessly and tell her daughter it was just a dream.
Currently, B is in recovery, receiving private care from a team that includes a dietitian, psychiatrist, and follow-up visits with her family doctor. She recently began working three times a week at the nursery. Holding on to hope, Ouellette says, “I really wish we could say we’ve gotten over it, but we’re still in the process. The road to recovery has been challenging, especially finding specialists trained in eating disorders, as there aren’t many to choose from. The financial burden is also heavy, with treatment costing about 6,000 NIS ($1,300) per month.” “It’s a lot of money,” admits Oriet, simply stating, ”I just want to save my daughter, and I fight for every breath she takes.”
Orit also emphasized a key point about the visibility of the disease, noting that people who meet B. sometimes say, “She doesn’t look like an anorexic,” because she is not significantly underweight. This perception highlights the tricky aspect of the disorder, which is not always associated with typical weight loss. Orit pointed out that if B.’s treatment plan had been determined solely on the basis of her weight, she would never have been treated because she would have exceeded the underweight limit.
Outside of her personal recovery, B. harbors a powerful dream. To create a home that can help girls with eating disorders that isn’t as coercive as a hospital room,” shares Ouellette. A place that provides a supportive framework.” Orit fervently hopes that B succeeds in realizing this dream, adding, “I know I will help her achieve it.”
In honor of World Eating Disorders Day of Action on June 2, Israel Hayom shares the stories of these mothers, whose stories highlight a common call for better healthcare system support for people with eating disorders.
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‘It’s a war over what scares my child the most – eating’ – www.israelhayom.com
