When 23-year-old Madeleine Billings died in her sleep just after Christmas last year, she spent nearly half her life trying to starve herself.
Not that a casual observer would notice. She was an A student in school, exercised, went to college and looked “deceptively healthy,” her parents said.
But during that time, she’d also attended a dozen inpatient and outpatient programs, received therapy, and tried drugs—anything to get her out of the clutches of anorexia nervosa† Nothing worked.
“She was brilliant. But in the end she was psychotic. I mean, the conversations I had with her the last week of her life, there was no Maddie. It was all illness,” her father, Nick Billings, 53, told TODAY.
“That brain was obsessed with Dr. Pepper and whether or not she accidentally sipped normal versus diet. And what did that mean? I spent hours talking to her about that subject.”
Her mother, who is a clinical psychologist, saw moments when Maddie seemed to realize how much danger her health was in, but she continued to severely restrict her eating.
“The voices, the eating disorder thoughts that she would have that were so cruel and critical to her, were so strong that all the behavior would sneak back and she couldn’t do it,” said Lisa Billings, 54. “It freaked me out incredibly. .”
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‘We threw everything on it’
The Denver, Colorado family first noticed something was wrong just before Maddie turned 13. That summer, for 8th grade, she was on a bike ride through France with her grandparents in a group that also included a teenage girl with an eating disorder. It impressed Maddie, her mother said. Maddie had also taken to heart some lighthearted comments teasing her about her healthy appetite.
That same summer, she also attended a soccer camp and another experience away from home.
“By the time we picked her up from there, she had lost so much weight (weight) that she just didn’t look right,” recalls Lisa Billings.
Her parents gave her intensive therapy and Maddie made a quick recovery. But when she started high school and got a challenging class schedule, plus hockey and soccer practice, her eating disorder came back.
Maddie was very good at everything she did, but she also had a significant uncontrolled underlying anxietywhich she managed through her eating disorder, her father said.
“It just started creeping back in and we saw it creeping back. There was no denial around this disease at any point. We threw everything we had on it,” he noted.
Nick Billings recalled how stressful regular dinners became when Lisa was constantly negotiating with Maddie about what to eat. Lisa felt her role was to make sure Maddie got the nutrition she needed while Nick took care of the couple’s other three children. It was tough on the family and made it hard to get along with other families, they recalled.
Maddie looked very normal weight-wise during her teenage years “because we did all the work,” her mother said.
But later, at some point, she lost weight to 76 pounds, despite many treatment programs along the way.
“We had her admitted to the hospital. We had her at the outpatient clinic. We had her in therapy. We had her on several meds. And it got worse’ said Nick Billings.
“I know that conventional treatment, I suppose, works for some. It didn’t work for her.”
He called it treatment-resistant anorexia, which some studies have shown that 10% of patients make up with the eating disorder. Treatment-resistant patients have more severe depressive symptoms and “endorse more serious eating disorder beliefs,” researchers found.
As a clinical psychologist trained in a children’s hospital, Lisa Billings had seen how terrible this disease could be.
Anorexia nervosa can be fatal and has an “extremely high” death rate compared to other mental disorders, according to the National Institute of Mental Health† Patients are at risk of dying from medical complications related to starvation, it warned. After a while, serious health consequences include heart and brain damage and multiple organ failure.
Maddie graduated from high school “with an obscenely high grade point average and a standardized test score that annoyed and impressed many”, read her obituary† She attended Dartmouth College for a short time before transferring to the University of Colorado because she wanted to be closer to home.
When the pandemic lockdowns kicked in, Maddie talked about being lonely a lot, which is what the family believes worsened her disorder† She became much sicker in the last year of her life, her mother said.
“She was the superwoman for so long,” noted Lisa Billings. “And then it was like the wheels came off and everything started to go wrong… she was just a complete mess physically by the end.”
Maddie’s resting heart rate was so low that she sometimes passed out when she stood up, her mother said. Her gastrointestinal system had shut down. The family went to the emergency department three times “with the feeling that our child is dying before our eyes,” recalls Nick Billings.
Last December, she was on a waiting list at an eating disorder treatment center in Denver, but no beds were available, her parents said. NBC News affiliate KUSA†
“She was complaining all day before (she died) about how exhausted she was and how cold she was,” her mother told TODAY.
Maddie died in her sleep at home on December 30, 2021. Her parents are urging families to pay attention to anorexia warning signssuch as extremely restricted eating and an intense fear of gaining weight, and take them seriously.
“If you have a kid who is actually performing and you find meth, the alarm bells are going off and you do something. But if you have that same kid and they’re not done eating, or they’re just eating certain things, you push those things through and say, “Oh, it’s okay,” Nick Billings said.
“This disease will kill you. It isolates you, starves you and kills you.”