Eating Disorders: it's not a choice, it's a disease - let's treat it right

“You know how I know it’s not the end?” my daughter says when I complain that I’m ‘at the end of my rope’ again in our struggles to get her the treatment she needs for her eating disorder (ED).

I answer what I know she wants to hear, what has become our little catechism of hope: “Because everything’s not alright yet?”

“That’s right,” she says. “Everyone knows that everything always turns out alright at the end. So if it’s not alright, then it’s not the end.”

While I believe what I say is true (because I have to in order to keep going on), the truth is that the end for too many of those suffering from an ED is very far from ‘alright’—or even ‘right’.

Unless you’ve lived with an ED, either as a sufferer or as a loved one, you cannot possibly understand how dramatically it can impact your life. For the last two years, our home became an institution when we put our daughter on 24/7 watch and tabulated every bite of food, checked every pocket for crumbled energy bars, held every bathroom door open ‘just a crack’ to ensure she didn’t purge. When she was admitted to hospital, our days revolved around the three or more trips back and forth to the ward every single day for months at a time, and the hours spent attempting to distract her from her relentless ED thoughts. For years, we watched, helpless, as she battled ED demons; she was so angry and confused and in so much pain it was almost unbearable to watch.

When the doctor, upon her admission, said it would take two to seven years for our daughter to recover, I didn’t understand he meant it would take all of our next two years; I never anticipated that it would cost me a promotion, twelve months (and counting) of paid work, anything resembling a social life and my own health. Or that it would cost my daughter so much more—her adolescence, a full year of school and almost all her friends. But these sacrifices were nothing when we considered the other, all-too-real consequence far too many ED sufferers experience: death. According the National Initiative for Eating Disorders (NIED):

Anorexia Nervosa has one of the highest overall mortality rates and the highest suicide rate of any psychiatric disorder. The risk of death is three times higher than in depression, schizophrenia or alcoholism and twelve times higher than in the general population.

Of all the myths surrounding ED’s, one of the most prevalent and damaging is the misconception that it’s a ‘lifestyle’—40% of Canadians polled by the National Eating Disorder Information Centre (NEDIC) in 2015 believed ED’s were a choice. The truth is that it is an incredibly complex and deadly disease that’s devastatingly underfunded and misunderstood. ED’s not a choice, it’s a disease and it needs to be treated. Unfortunately, timely and effective treatment is hard to come by for many sufferers in Canada.

Roughly one million Canadians have diagnosed eating disorders in Canada, and 1,500 of these die every year from complications and suicide. The numbers of sufferers, at least among adolescents, also appears to be increasing; despite media messaging about ‘the obesity epidemic’, twice as many teenage girls suffer from an ED than from obesity. But despite the severity and prevalence of EDs, there are few treatment options outside of hospital emergency units, where staffs are often not always trained in eating disorders and treatments are short-term. In Ontario, there are only 24 adult and 24 pediatric beds in eating disorder wards, available primarily for re-feeding and medical stabilization. Waiting times to get into these wards can be months, and OHIP limits patient stays to three months (at least in the pediatric ward), after which sufferers must be discharged home under parental supervision or to residential treatment centres that, until recently, were all out of the country. As my friend once noted, the system is madness; would we treat someone with cancer the same way? Just send them stateside if their radiation treatment didn’t work ‘the first time’? Just kick them out of hospital because their infection refused to heal?

Dr. Blake Woodside, Medical Director for the Program for Eating Disorders at the Toronto General Hospital probably said it best, as recorded in the “Eating Disorders Among Girls and Women in Canada” report by the House of Commons to the Standing Committee on the Status of Women, issued November 2014:

If there were waits like this of four to six months for prostate cancer treatment, there would be a national outcry. There would be marches in the streets. Middle-age men like me would attend the marches, but of course prostate cancer is a disease of middle-age men just like me, and older, so there is a clinic for prostate cancer in every hospital in this country. Compare that with the situation for anorexia nervosa where, in the province of Ontario… there are only three treatment centres that have in-patient beds for a population of 12 million. If this isn't discrimination, I don't know what is.

I have to say that, considering what other families have been through (click to read the Irwin Family’s struggle), we have been relatively fortunate. Living in Ottawa, my daughter was admitted into the system when she first began to experience heart problems—this was just before the Children’s Hospital of Eastern Ontario (CHEO) stopped taking referrals owing to a lack of funding and space (see Dr. Spettigue’s interview on CHEO’s ED admittance). This was, of course, after many weeks of sleepless nights when I would wake in a panic and check my daughter’s pulse to ensure she hadn’t died of a heart attack in her sleep. My daughter has since received extraordinary care from the limited resources at CHEO; our daughter’s physician moved mountains of OHIP paperwork to secure my daughter placement in the few treatment programs available, and fought on our behalf to ensure her quality of care when she was hospitalized outside of the country during a terrifying set-back. The psychiatric, nursing and front-line staff on the ED and medical wards were also amazing supports. But even with these resources, my family has had to sacrifice half our income to ensure someone was home to support my daughter’s safe recovery, and we paid professionals to provide what support the system could not, including family counselling as well as travel costs to and from treatment centres inside and outside of the country—a high financial burden many families must currently bear. I’m only grateful that we could afford the support we could, but wonder what those who don’t have these same means, like single parents, would do in the same situation? Or those parents who must shell out as much as $50,000 for three months of treatment for their children because the wait list for other treatment centres is too long? Because this isn’t just a disease of upper- and middle-class white people, despite how it has often been portrayed in movies and television, but a disease that transcends all race, gender and socio-economic boundaries.

Fortunately, we’ve been able to secure my daughter a bed in the new Adolescent Eating Disorder Unit at Ontario Shores in Whitby, Ontario. The first of its kind in the province, the unit opened in November 2014 and offers the first publically funded long-term treatment program for adolescents suffering from ED in Ontario. Already, their beds are full. The program is experimental, but promising, and is run by a committed staff dedicated to helping sufferers regain their life in a safe environment. That’s one positive thing I will say about my life since ED took over, I’ve never before met such caring and compassionate people as I have in the ED treatment world. If only caring and compassion were enough.

Last November, several top physicians and psychologists warned that more research and resources are needed to treat ED in this country. It’s surprising, really, how little we know about ED, the deadliest mental illness in the country. But what’s more shocking is just how poorly funded ED programs are:

According to the National Institute of Health (NIH), the average funding for anorexia sufferers from 2008 – 2011 was $6.50 per person, whereas, over the same period, the average funding for people with Schizophrenia and Bipolar Disorder was $200.33.Yet twice as many people will die from a serious Eating Disorder than from either of the other mental illnesses combined. (NIED)

Change needs to happen, and it begins with us in the community accepting and promoting the truth: that EDs are serious illnesses and sufferers deserve proper treatment. As Canadians, we can and must do better if we ever hope to help my daughter and other sufferers get to any kind of ‘alright’—or right—in the end.

Wondering what you can do to help? Spread the word, promote awareness, and please check out these non-profit organizations aimed at helping generate awareness and support for eating disorders in Canada and Ontario:

Hopewell – Hopewell is eastern Ontario’s only eating disorder support centre. We are a not-for-profit registered charitable organization created in 1999 by three Ottawa mothers who were driven by a common goal to help their daughters overcome their battles with anorexia.

National Initiative for Eating Disorders: NIED is a not-for-profit coalition of health care professionals, counsellors and parents with children suffering from Eating Disorders. NIED aims to increase the awareness and education of Eating Disorders to sow the seeds for change in the understanding, treatment and funding of the disease in Canada.

The National Eating Disorder Information Centre: NEDIC is a non-profit organization founded in 1985 to provide information and resources on eating disorders and food and weight preoccupation. One of our main goals is to inform the public about eating disorders and related issues.