Canada: A System That Fails Those With Eating Disorders

Eating Disorders are brain-based, biological illnesses with a strong genetic component. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Karen's Story

Where to begin? I believe that this is and will be the most difficult task I will ever be involved in, filled with the unknown, fear, uncertainty and grief. I am the mother of an adult daughter (age 30 ) with an eating disorder spanning a time period of 15 years so far.

We reside in a Toronto, Ontario suburb. Our journey began in high school when we discovered our daughter had started binging and purging.  Of course the denials were there though we finally convinced her family doctor, who did not seem to be terribly concerned, to refer to a nutritionist. Our daughter insisted that she had everything under control and that this was an infrequent occurrence. 

She was fairly stable for 10 years.

Looking back there were things we, and others, should have picked up on, such as low self esteem, some OCD behaviours, inability to be satisfied with her job and changing jobs frequently, financial difficulties and some heavy drinking. As time went one, she declined. Four years ago  she entered intensive outpatient treatment for 3 months followed by six weeks of transition after a three month wait. She relapsed four months later.

The last four years have been awful as she quickly went downhill with severe bulimia and purging, laxative abuse and restricting food intake. She is unable to work due to high anxiety, panic attacks and weakness. She went on disability and lived with us.

She consented to treatment once again and after a four month wait was admitted to intensive inpatient at a hospital-based program due to malnourishment. By admission time she had lost the incentive and discharged herself after three weeks. She found the program repetitive with too many groups and not enough individual work.  Continuing to become more and more ill, with closer monitoring by physicians and a few day admissions to hospital for IV potassium, we and her therapist convinced her to try treatment in the states.  

She consented and was there within a week . She stayed three months and had individual counseling, nutrition  counseling  and group therapy all on a daily basis. On discharge there was no appropriate follow up here In Canada which contributed to relapse again months later. The out-of-pocket cost was 1400.00 a day.

Her concurrent alcohol abuse escalated and anxiety worsened and presently she is in an alcohol rehab center paid for by us.  No government-sponsored centers will treat coexisting disorders at the same time (eating disorders often have co-morbid conditions such as anxiety, OCD and substance abuse).

The Canadian system fails due to too long wait times which mean sufferers change their mind and lose motivation.  Minimal individual therapies in treatment.  Groups can be triggering and after a few times in treatment become repetitive.  The Canadian system fails due to lack of education for physicians to recognize and act on eating disorders quickly (prompt, aggressive treatment prevents eating disorders from becoming chronic). The Canadian System fails due to lack of follow up treatment for out-of-country clients when they have had to turn to another country due to long wait times here. The Canadian system fails due to lack of involvement of parents due to confidentiality and lack of age-appropriate treatment for adults.

Financial responsibility is put on parents for the adult child as they can't work to fund the psychologists, medications, out-of-country treatment and other expenses.

The dread and fear we live with watching our daughter waste away physically and mentally from malnourishment and organ failure is terrifying.

Most tragic is the time spent in sheer hell, suffering and wasting away with this terrible disease when there is the possibility of recovery if treatment can be given in timely manner with effective, evidence-based protocols; to me this is pathetic and inhumane.

Thank you for your interest; we need to make the Canadian system one of success, not failure.

Canada: A Rural Zipcode Should NOT Mean No Help

Eating Disorders are brain-based, biological illnesses with a strong genetic component. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Trish's Story

My story encompasses the struggles that people who don’t have health benefits, who don’t have a wise family doctor, who live in rural areas or who don’t come from a financially wealthy background.  It wasn’t easy on so many levels and this is why we need change to the services available, or lack thereof, to people who struggle with these deathly disorders.

I was never formally diagnosed. I worked out a lot and ate very little. It wasn't until treatment that someone actually paid attention to me, but I just always assumed I had anorexia. I began losing weight the healthy way as I was overweight when I first began this journey, but it was probably October of 2007 when it all began getting out of control. I had hit my weight loss goal but I knew I could go further.

My condition got worse in January of 2008 and I began seeing a counselor for family issues. Luckily, the counselor that I was seeing was provided by OHIP, however only eight sessions. She noticed me deteriorating right before her eyes and she somehow found more sessions for me and kept seeing me because I didn’t have health benefits.  My family physician had no clue. He said it was okay that exercised for 4 hours a day, I just had to eat more. He even gave me suggestions as to what to eat. I knew those were things I would stay away from.

By March of 2008 I knew I had a problem and wanted help. I was seeing a cardiologist because my heart rate was so slow and there were discussions of putting a pacemaker in me. 

My counselor gave me options but they were all located in the GTA.  Simcoe County (I was living in Wasaga Beach) had no eating disorder services for someone my age.

I had no idea how I was going to do this but I called Credit Valley Hospital and had forms faxed to me.  I took them to my doctor to sign and with reluctance, because he didn't think I needed it - I could fix this myself, he signed it. 

I was placed on a wait list that was months long.  It wouldn't be until February or March of 2009 that I could go.  During this time, I was undergoing tests and hospitalized for my heart – my resting heart rate was 26 beats per minute*.  Beginning immediately, I would have to travel to Mississauga every Thursday, for eight weeks, to attend motivation group in order to stay eligible.  My home, Wasaga Beach, is 2.5 hours from Mississauga.

I entered treatment December 2008. I stayed until August 2009 and by the time I left, I was in severe financial debt.  Although the treatment was covered, I had everyday living to pay for. The first two months I was forced to pay $1,400 a month to live in a hotel because I was rushed to find a place. By February I found a tiny basement apartment to rent for $600 a month.  It was a place to live while I was attending full day treatment. I also had to pay for my car, car insurance, gas, food, laundry… the list goes on.  I lived off of credit cards and Ontario Works.

I graduated from Credit Valley in August of 2009 and have been back twice to be a motivational speaker. Currently, I am at a healthy weight, I have a great career, I am married and my husband and I are trying to have a baby. 

*It is very common for doctors--who generally have very little training on eating disorders to attribute a low heart rate to excellent health.

Canada: A Journey to Recovery Shouldn't have to Mean a Trip to the U.S.

Eating Disorders are brain-based, biological illnesses with a strong genetic component. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

                                                           

                                                           Ashley's Story                                         

I am 31 and a survivor of an eating disorder which included restricting and over exercising.  After a seven-year struggle, I am now almost eight years in recovery.

I started struggling at 16 after I was put on a then new anti-psychotic for depression. As a result of that, I gained a significant amount of weight in just under six weeks. I was then told to diet and exercise, but with no oversight. Within months, I was deep into the eating disorder.

I finally sought help at the age of 19 through Interior Health at the outpatient eating disorder program in Kelowna, BC in 2003. I was only able to participate in the outpatient program for a few months because I was too unwell to benefit from it. I was not able to access a higher level of care through St. Paul’s in Vancouver despite needing it due to unrealistic expectations of being able to eat all meals and snacks and gaining weight before I was allowed to participate in that particular program (which was the entire reason I needed a higher level of care to begin with!).

I was medically monitored and had a psychiatrist as well as case managers from 2003 to 2008 but with no other treatment for the eating disorder. Despite inquiring again two or so times about a higher level of care, I was still unable to access it for several reasons. The wait list as of 2006 was an estimated nine months for a component of St. Paul’s program.

I tried to get better on my own but was not successful.

I was finally able to get treatment in a residential center in the U.S. in 2007 thanks to the help of a man I met online who had followed me via a video blog I did sharing my struggles with mental health, the eating disorder, and trying to get much needed help.

During those seven years, I experienced severe gaps in care, inadequate treatment because I supposedly was not physically or psychiatrically unwell enough for hospital admission. I had ill-equipped ER physicians/nurses when it came to patients with mental health issues; this almost led to my death in 2003 after being sent home where my appendix burst, leading to emergency surgery the following day due to lack of appropriate testing and assuming it was a mental health issue. This and other experiences have left me with very little help and little faith in the system.

It was only when that one person stepped in and gave me the chance I needed--what I had been fighting for over all years--that helped save my life. I do not believe I would have ever received the necessary treatment I needed in B.C., as all these years later so many still struggle to get desperately needed adequate treatment. Without that help--not from Canada, but in another country--I do not believe I would be here today.