Why is chronic anorexia so hard to treat?

Up to 20 per cent of people who develop anorexia will have chronic course, with distinct treatment challenges and high mortality rates

The dizzying combination of side effects hit Lisa Sheinfeld like clockwork.
Two hours after she’d taken her usual amount of laxatives on an autumn afternoon last year, the 42-year-old Thornhill mother of three sat in a public washroom, sweaty and lightheaded. The pain, she recalls, was more intense than being in labour. To cope with her overwhelming nausea, she curled her thin 5-foot-5 body into a ball on the floor with a sweater bunched under her arm. It was an awful, all-too-familiar feeling.

And she’d done it to herself.

For two decades — nearly half her life — Sheinfeld has been coping with anorexia nervosa, a chronic and deadly eating disorder. Anorexia has a typical onset in the early teens, but the worn-out stereotype of young women hoping to shed a few pounds doesn’t tell the full story. Around 150,000 Canadians have or once had anorexia, according to data in a 2014 federal report. Other research shows around 20 per cent of people who develop anorexia in adolescence or young adulthood have a chronic course, typically living with the disorder for a decade or more.

Having an eating disorder throughout adulthood comes with distinct challenges, including few intensive treatment options, lengthy wait times, high mortality rates, and the strain of trying to recover while juggling the demands of a family and career.

For Sheinfeld, the disorder started in her early 20s when she first tried using laxatives. The initial feeling of a flat stomach was “amazing,” Sheinfeld recalls, but soon her family started noticing her frequent bathroom trips and unhealthy weight loss. After being diagnosed with an eating disorder, she tried therapy, and attended a brief treatment program in Toronto. It was like a detox, she says, and only lasted around three weeks. At 29, she married her husband Rob, and with children on the horizon, Sheinfeld knew her body needed to be healthy; the laxatives would have to go.

For the next 10 years, the disorder seemed to be under control. Sheinfeld never used laxatives in the stretch when her three sons, now aged 9, 7, and 5, were conceived and born. But in April 2014, she says a “switch went off.”

Sheinfeld bought a pack of drugstore laxatives — she can’t recall the reason why — and, in the back of her mind, she knew she was inviting the return of a full-blown eating disorder. “It happened very quickly. I knew all the secrets. I knew how to lie,” she recalls. Sheinfeld was diagnosed with anorexia nervosa, featuring the purging typically associated with bulimia nervosa, and lost 30 pounds in less than a year by coupling laxative use with a restrictive diet, hiding lengthy bathroom trips from her colleagues, husband, and kids — a lifestyle filled with pain and secrecy.

“It’s like I’m on a merry-go-round, and I just can’t get off of it,” Sheinfeld says. “I want to, but I can’t.”

Dr. Allan Kaplan, a senior clinician-scientist with the Centre for Addiction and Mental Health, compares anorexia to an addiction. A trigger like depression or anxiety will lead someone to start using drugs, he says, but the unpleasant symptoms of withdrawal causes them to continue.

“Someone who is in cocaine withdrawal or heroin withdrawal can’t will themselves to not be in withdrawal. It’s the same with anorexia nervosa — someone can’t will themselves to be in control,” says Kaplan, who has spent 35 years studying the psychobiology of anorexia and bulimia.

And that cycle can be deadly. Among the side-effects of anorexia, studies show ongoing weight loss can lead to osteoporosis, fertility problems, and atrophy of the brain, among other medical conditions, and the suicide mortality rate of people with anorexia is one of the highest of all psychiatric illnesses, according to studies cited by the American Association of Suicidology.

The National Eating Disorder Information Centre suggests an estimated 10 per cent of people with anorexia will die within 10 years of the disorder’s onset — a stat that jumps to 50 per cent for those suffering a chronic course, either because of medical complications associated with the disorder or by suicide, Kaplan says.

But for adult sufferers, finding suitable treatment is difficult. Sheinfeld says she’s been told her Body Mass Index is too low for certain treatment programs, while others have responded with months-long waiting lists.

“My hope is just to have a life,” Sheinfeld says. “To have my life back.”

Road to recovery

Wendy Preskow founded the National Initiative for Eating Disorders in 2012 after witnessing her daughter’s struggle to get adequate care. Her daughter Amy, 30, has been coping with anorexia and bulimia since she was 14.

She said long wait times for treatment programs often lead to stints in the hospital instead. In 2014 alone, Amy went to the hospital four times; in one instance, clinicians needed to give her an injection and couldn’t figure out how to do it because of her gaunt frame.

Anorexia is not just a disorder of teenage girls, Preskow stresses. “Some people in their 40s and 50s have been living with this all their lives.”

While experts say intensive treatment is generally required for the sickest anorexia patients, there are just four health centres in Ontario offering inpatient services for adults with the disorder: The Homewood Health Centre in Guelph, Trillium Health Partners in Mississauga, The Ottawa Hospital in Ottawa, and the University Health Network in Toronto.

“We do see the sickest patients immediately in terms of consultations,” says Dr. Blake Woodside, director of UHN’s inpatient eating disorders service at Toronto General Hospital, but adds someone could wait four to six months for one of its 10 beds. “There’s nothing we can do about that. Everyone on that waiting list is very, very sick.”

Even when intensive treatment programs are available, helping longtime anorexia sufferers is particularly challenging, as people are disabled by their illness, says CAMH’s Kaplan. “Once people lose weight, they change their brain chemistry,” he says. “Their processing isn’t normal.”

Kaplan’s current research focuses on how anorexia impacts the brain’s myelin, the fatty covering of “white matter” that delivers information to the “grey matter” centres controlling hearing, vision, emotions and high-level thinking. When people lose weight, they lose body tissue from every part of their body, including the brain. The myelin acts like the plastic coating on a wire — if too much is lost, the device short-circuits, Kaplan says.

While findings from Kaplan’s research could be two years away, other physiological complications of chronic anorexia are clear. The disorder affects how the brain communicates with the gut, says Dr. Angela Guarda, director of the Eating Disorders Program at the Johns Hopkins Hospital in Baltimore. People with anorexia feel full with less food, which makes it harder to gain weight, she says, and also have symptoms of a gastro-intestinal disorder, like bloating, constipation, and abdominal pain.

On top of that, adults with the disorder may be leading a secret life, Kaplan says, given the guilt and stigma associated with their illness. And while parents might be able to force a child into treatment, it’s a different situation with a spouse.

Lisa Sheinfeld’s husband can relate. Last fall, at a therapy session in Toronto for families of people with eating disorders, Rob looked around the room — there were around 20 people there, he says — and all he saw were parents.

“I’m thinking to myself, if your child is under 18, you can put them in a hospital as a parent. You can take things away from them, you can make little threatening positioning tactics to get kids to do what you want them to do,” he says. “How do you do that with a 42-year-old? Am I going to take her car away, say she can’t go out with her girlfriends? I can’t do that.”

Despite the overwhelming challenges, experts in the Canadian eating disorders field hope more research and advocacy can improve treatment options for people with chronic anorexia.

Preskow, of the National Initiative for Eating Disorders, is leading the national push for more research. In April, she met with MPs in Ottawa in hopes of moving forward on recommendations made in the 2014 eating disorders report from the Standing Committee on the Status of Women — such as creating a centralized data base of treatment programs, addressing long wait times, and closing gaps in data collection about eating disorders.

“I think eating disorders need to have the same recognition, funding, and research that every other physical disease gets,” Preskow says.

One bright spot on the horizon is a private member’s bill on eating disorders awareness from Sudbury MPP Glenn Thibeault, which passed second reading in May. Should the bill gain royal assent, Feb. 1 to 7 every year will be recognized as Eating Disorders Awareness Week in Ontario.

“The fact is that eating disorders affect both men and women, young and old, and from all backgrounds and socioeconomic backgrounds,” says Thibeault. “In order to address eating disorders more effectively, we need to challenge these stereotypes through increased awareness.”

As for Sheinfeld, she’s striving to get better — before it’s too late. Her last physical in February, she says, was a turning point, though her test results didn’t show anything critical. “How am I not dead?” she asked her physician. Sheinfeld’s doctor told her that, if test results showed major damage in her organs, it would already be too late: She’d be dead in three months.

Earlier this year, Sheinfeld found a new therapist, a woman who has recovered from an eating disorder, giving her a newfound sense of accountability. She is also curbing her laxative use, and has been chronicling her progress on her blog.

In a recent phone call with the Toronto Star, Sheinfeld’s voice is strong, the tone forceful. Once she recovers, she hopes to help other sufferers, she says, perhaps through public speaking or opening her own clinic.

“To suffer for 20 years through this — and to just walk away from it recovered — it’s not enough. I need to do something with this,” Sheinfeld says.

“This is just a starting point.”

Myth: People with anorexia enjoy it

Reality: There’s an assumption that people with this eating disorder enjoy it, and that’s why they continue living this way, says Stoney Creek-based psychotherapist Carly Crawford, who battled an eating disorder for around 10 years. But that’s not the case. “The people I see are mentally exhausted, and so depleted of the energy to do the things they need to do to get well, so they stay sick,” she says.

Myth: It’s caused by models and the media

Reality: Modern research is revealing biological and genetic components to anorexia, even though it’s often tied to the influence of skinny models and celebrities. “Yes, underweight models and the thin ideal promote dieting and disordered eating,” says Dr. Angela Guarda, director of the Eating Disorders Program at the Johns Hopkins Hospital in Baltimore. “But if that was enough to explain anorexia, we would all have it.”

Myth: The disorder is a lifestyle choice

Reality: People often think anorexia is a lifestyle choice, like being a runner or going on a diet – but it’s actually a dangerous psychological disorder beyond ones control. “A lifestyle choice is something we can choose to do or not to do. This is very different,” says Dr. Guarda. “People can not choose to not do what they did yesterday if they have anorexia.”

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