As more teens are hospitalized for eating disorders, here's what parents need to know
Amelia Haywood’s story is the kind that doctors say they’ve been hearing over and over again for months now.
“I’m 15 years old. I play volleyball,” Haywood says, tucking her long brown hair behind her ear, “and six months ago I was diagnosed with anorexia nervosa.”
These days, Amelia’s doing really well. She looks happy and healthy. She’s hanging out with friends again. Food and exercise have loosened their grip on her life, Amelia says.
But the disease that reared its head during the COVID-19 pandemic has put her mind, her body, and her family, through hell. In March this year, she was hospitalized at the University of Michigan C.S. Mott Children’s hospital for a week, she says.
“And then about one or two weeks later, I was hospitalized at my local children’s hospital. And then I was transferred to a psychiatric hospital, where I stayed for about a week. So in total, I have been hospitalized at three different hospitals and I’ve been to the emergency room four times.”
A surge in hospitalizations, and an overwhelming demand for treatment
The doctors that treated Haywood, as well as eating disorder experts across the country, are reeling from what they describe as an almost secondary epidemic of post-COVID eating disorders. At the University of Michigan, adolescent eating disorder hospitalizations have doubled from previous years.
“These are kids whose bodies are failing because of their poor nutritional intake,” Dr. Terry Bravender, an adolescent medicine doctor who specializes in eating disorders at the University of Michgian, said. “The medical hospital is really a safety net rescue for them, so that they don't starve to death.”
A recent study from Boston Children’s Hospital reveals a similar surge there too, in which “inpatient admissions, hospital bed-days, and outpatient care-related inquiries” increased dramatically postpandemic.
Dr. Tracy Richmond, the director of the eating disorder program at Boston Children's, co-authored the study. Her team’s been gathering inpatient data across 15 different sites that make up the National Eating Disorders Quality Improvement Collaborative.
“And I can tell you the punch line of that, which is that on average across sites, there's at least a doubling of inpatient care requests,” Richmond said, “It’s a really big impact.”
Even before the pandemic, there was a shortage of specialists and psychotherapists who know how to effectively treat eating disorders. It’s still a relatively new field, Richmond says, and there’s a common misperception that it’s a particularly “emotionally draining” and “complicated” specialty to enter.
Now doctors say they’re hearing from increasingly desperate parents, who feel unable to get their sick kid the help they need.
“We're hearing literal feedback that families have called 60 therapists. Sixty. And not gotten a response,” Richmond said.
“The families feel like they’ve reached out to everybody, and nobody can get them in,” said Dr. Natalie Prohaska, the medical director of the Comprehensive Eating Disorders Program at Mott Children’s Hospital.
“And it's really hard to say to them, ‘I wish even at such a big institution like Michigan Medicine, that we would have the ability to see everybody. And we're horribly backed up.’ And so I think parents feel desperate, watching their kid starve.”
“I didn’t have control over anything, except what I ate.”
For Amelia Haywood, it started off as just working out 20 minutes a day. When the pandemic hit and quarantine started, Haywood wanted to stay in shape for volleyball. Keeping up a commitment to “eating healthy” and running felt like just a smart idea, nothing extreme, just a good outlet.
“Everything in the world is like, people are dying. Everyone's getting sick. You can't see your friends,” she said. “It was hard. Because I felt like I didn't have any control over anything except what I ate and how I exercised.”
But as the long months of quarantine stretched into summer, then fall, then winter, that restriction and intensity started to consume her. She’d make elaborate smoothie bowls and post pictures to Instagram, but then give them to her sister, pretending that she’d already eaten. She’d cancel on friends to fit in another run. She wore baggy sweats so her mom couldn’t see how much weight she was losing, and started withdrawing, spending more time in her room.
“I had basically no emotions,” she said. “I was just numb. All I wanted to do is, like, lay in my bed. And my parents obviously were like, ‘What's going on?’”
Eventually her mom, Jennifer Ackerman-Haywood, confronted her daughter in her room this past winter.
“I just went in there and I said, ‘Amelia, I know something's up with you. And I'm not going to leave your room until, you know, as long as it takes,’” she said. “‘You can take your time telling me. But I'm not going anywhere until we have a discussion about this. Because I'm very concerned.’”
“And I finally said, ‘I'm struggling with food,’” Haywood said. “And that was probably the hardest thing I've ever said in my whole entire life.”
Why are we seeing this increase now?
Eating disorders, like many other diseases, have a strong genetic component.
“What we see is, about 50% or more of the differences among people in their disordered eating patterns, are due to differences in our genes,” said Dr. Jessica Van Huysse, a clinical psychologist and assistant professor at the University of Michigan and the clinical director of the Comprehensive Eating Disorders Program.
“So we know certain people are more at risk for this just at baseline. But that doesn't explain it all, right? Enviroment explains part of this, too. And I sort of think about that gene/environment interaction, when I think about COVID. COVID was a stressor for everybody.”
While there’s no single trigger for an eating disorder, the pandemic created a “perfect storm” for these illnesses to emerge and thrive, said Dr. Samantha DeCaro. She’s the director of clinical outreach and education for the Renfrew Center, a private network of eating disorder treatment clinics in several states. Call volume there is up 65% this year, DeCaro said.
Even before the pandemic, patients often reported a link between the emergence or “heightening” of their eating disorder to a period of intense change or trauma in their lives, DeCaro said – like a divorce, a move, or loss of a loved one. And for many adolescents, the pandemic changed nearly every part of their lives, almost overnight.
“This is really an experience of collective trauma, collective grief,” DeCaro said. “Not only losing loved ones to COVID, but losing so many parts of our lives. School, work, things have been completely turned upside down ... and what we know about eating disorders, even prior to the pandemic, is that they thrive in isolation. They thrive in secrecy. And so here we are over a year later, we have been isolated. And this has definitely contributed to not only the onset of an eating disorder, but relapses as well for those who maybe have struggled in the past.”
What are families supposed to do?
For Ackerman-Haywood, Amelia’s mom, navigating her daughter’s illness felt like moving through a maze.
“It seems insane. Because if your child gets a cancer diagnosis – which is a truly awful diagnosis, no one’s a winner here, any of these diseases are terrible – but, there’s a protocol for cancer. There's a protocol for some of these other illnesses out there. There isn't a universal protocol for eating disorders.”
So she did what so many others had done before her, talk to other parents. “What have you tried? What works? What doesn’t? Who are you seeing? That kind of thing,” Ackerman-Haywood said. “And it's kind of like coming from other parents, the information. More than coming from the medical community.”
Parents of kids with eating disorders have even created their own organization: F.E.A.S.T, a nonprofit started in 2007, to “support those parents, and to supply the information, resources, and empowerment that they need at a time when they are feeling lost and alone,” said executive director Judy Krasna. “We teach parents and caregivers how they can put their loved one on a path to recovery, so that they don't lose more ground against the eating disorder while waiting for treatment to start.”
That’s become especially critical in the last year and half, Krasna said.
“Globally, we are seeing much longer waits for treatment as a result of the pandemic. This takes early intervention off the table, which worsens outcomes overall. By the time people start treatment, their physical condition has often deteriorated and their eating disorder has compromised their cognitive function. So essentially, they are starting treatment in a worse place, which gives them a slimmer chance of a full recovery. In addition, parents are left panicked, terrified, confused, and without professional guidance,” Krasna said.
While every individual’s treatment is unique, here are some steps parents and experts recommend.
#1: Get medical attention, now
The day after Amelia Haywood told her mom she was struggling, Ackerman-Haywood had her in the pediatrician’s office at 7:30 am. Don’t wait for a specialist, experts advise. Even a general practitioner can give you a diagnosis, local referrals, and run medical tests that can reveal serious, but unseen health issues such as low blood pressure, low heart rates, and electrolyte imbalances.
And don’t skip this part even if your child isn’t considered medically underweight. They can still be at risk, said Dr. Tracy Richmond.
“I had a patient who lost 50% of his body weight, and it was over nine months, but came in with really significantly low heart rates, really low blood pressure,” she said. “But to the average person who saw him on the street, he would look fine. You can end up in what is termed a ‘healthy’ weight range. But if you've lost a large percentage of your body weight and done it with really disordered behaviors, and therefore really rapidly, you can end up needing medical stabilization, even when you appear to be healthy to the average [person.]”
Have your doctor go through those results with you, and ask them to flag anything unusual. Amelia had a check-up earlier last fall, before she was diagnosed with an eating disorder. But Ackerman-Haywood said it wasn’t until after her daughter’s diagnosis that the doctors’ office told her Amelia had fallen off the growth chart at that previous appointment. Even after she was diagnosed with anorexia nervosa, it was weeks before she learned Amelia’s EKG showed a dangerously low heart rate.
“When I learned about what her rate was three weeks prior, I realized that she was about a point away from [where] she'd have to be immediately hospitalized,” she said. “And I just thought, ‘Wow, we were that close to that. We didn't know.’”
#2: Build a support team
Typically, a critical part of that team will be a psychotherapist who specializes in eating disorders. The National Eating Disorder Association has a list online of providers in each state. And even if there aren’t any specialists near you, many providers are now doing virtual visits. Look for certified nutritionists and dieticians who have experience working with adolescents during recovery, or ask your doctor or the therapist for referrals.
Treatment and recovery can be a long-term process, so if you feel comfortable, reach out to people in your community who can support you, your child, and your family.
Janine Van Patten’s teenage daughter, whose name we’re not using at the family’s request, had been diagnosed with anorexia nervosa before the pandemic. But quarantine seemed to exacerbate the illness, Van Patten said.
She ended up taking a month off work through FMLA leave, partly unpaid, to be able to stay home with her daughter and supervise her meals. But the family just needed more help. “I reached out to family members to come and stay, [like] my mother. And also her teacher volunteered to eat with [my daughter] every day at school. So we were able to get her eating, eventually, after a couple of months, eating regular meals.”
#3 Understand how these illnesses work
Before your kid can get better mentally, they may need to get better physically.
That’s because the body’s response to restricted eating is both biolgical and psychological, according Dr. Van Huysse.
“Malnutrition makes us more irritable, can make us more depressed, more anxious, more rigid,” she said. “So people with severe malnourishment have difficulty sometimes making decisions about everyday things. So what we're really doing in the early phases of treatment, are reversing some of these biological effects of starvation. And what we'll often say is, we'll finally get to meet the actual kid, not the kid that's clouded by the eating disorder, once they've had some more consistent nourishment.”
When Ackerman-Haywood first found a therapist for her daughter Amelia, she didn't understand that the eating disorder was actually undercutting that treatment.
“What I didn't realize at the time, that now I fully understand, is that when your child is medically unstable, they cannot process therapy sessions and things like that,” she said. “If your brain is starved and your heart is suffering and your organs are being robbed of nutrition, like you can't mentally do that work yet.”
#4 Don’t give up
Recovery from eating disorders is possible, experts say. But relapses and setbacks can be part of that process. So don’t hesitate to seek more intensive treatment if your child isn’t improving.
During the winter and into the early spring of this year, Amelia Haywood was in and out of the hospital, and her recovery felt unsteady. She’d eat, but then be plagued with obsessive thoughts of guilt. Late one night, she had a panic attack. “That was our first trip to the ER,” Ackerman-Haywood said. “And the attending basically came in and said, ‘Well you know, compared to your original EKG, it’s better. You’re doing great.’ And so we were walking out of the hospital and she was like, ‘OK, I don't need to eat anymore. He said I'm doing great.’ And so I realized at that point we had a major setback going on.”
They found an adolescent medicine doctor in their area who had experience treating disorders, and recommended Amelia try medication to assist in the recovery process.
“Willpower alone is usually not going to be enough, especially if you have an acute case,” Ackerman-Haywood said. “If someone says your child needs to go on medication, a lot of parents are like, ‘Whoa, I don't think I want my kid on medication.’ We did not start to see actual results until Amelia did go on some medications that would help her kind of alleviate the nagging that was happening [around food.]”
When Amelia was hospitalized again, doctors suggested inpatient treatment at a nearby psychiatric hospital. Ackerman-Haywood says checking her 15-year-old daughter into a mental hospital, and then driving away, was one of the hardest things she’s ever had to do. It was terrifying and surreal, the kind of thing she remembers thinking happens to “other people,” not her family. “This is something that can happen to anybody,” she says now.
But for Amelia, that treatment ended up being a turning point. “You realize that, I’m not alone,” she said. “I was able to meet people who are going through the same thing I was, and talk to them and be surrounded by them,” she said. “And because I feel like eating disorders ... make you feel so isolated and so alone, like ... there’s something wrong with you. But being able to talk to people who are going through the same thing helped me so much.”
Now, six months after her diagnosis, it feels “like we have our daughter back,” Ackerman-Haywood said. “I mean, we're not out of the woods. But we've been running through a haunted forest for the last four months. And I can see we're getting to the end, kind of being able to get back to normal hopefully.”
And Amelia wants others going through this to know they’re not alone.
“For people who are struggling, just know that it gets better. The really hard time is temporary.... I'm six months out, and I am starting to get activity back [in my life.] So I can hang out with my friends and live my life how I want to live. And I know it's really hard to recover, and really hard to reach out. But at the end of the day, it's so worth it.”