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.

Canada: When Things Go Right (ish)

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!

                                          Recovery IS Possible

My name is Julie, and I am a mother of four, one son and three daughters, the last two being twins. We are a happy, normal family. I am primarily a stay-at-home mother, with a self-employed husband who usually works from home. I live just outside of a small town in Ontario.

When "G", my youngest, was approaching her 17th birthday, I noticed changes in her mood as well as body.  She was an excellent student and rugby player. As the summer rolled around and she turned 17, there was a noticeable weight loss and mood changes as she focused on eating "healthy."

Now with protruding bones and seemingly very depressed, I knew we were dealing with anorexia and depression.  I got her an appointment with the Family and Youth Clinic at Peterborough Regional Hospital, one hour away, with a team of a social worker, nurse practitioner and dietitian, as well as our local family doctor.  Blood tests indicated malnourishment, ECG showed a very dangerously low heart rate and mentally she was unstable, saying she had a plan for suicide.  She was always tired and cold. She was no longer the daughter I knew. She was withdrawn, moody, sometimes mildly violent and started to self harm.

As her BMI dropped below 16, I was told she would be put on a wait list for SickKids or CHEO. I was told the wait was 3 to 6 months. At this point I worried that her organs, particularly her weak heart, would deteriorate to the point of shutting down. I knew my daughter was dying.

Since she was so medically unstable, and our timing was right, "G" ended up jumping the queue at SickKids and spent a month there.Ten months of outpatient treatment at PRHC, with a psychiatrist added to the team, she was discharged and is now away at college where she sees a nurse practitioner once per week.

My daughter was one of the lucky ones.  I got her into treatment quickly, mainly from my own research; my doctor has had no experience in dealing with eating disorders and could not help except to run tests and monitor her vitals.  She had to learn along the way, which did not instill confidence in me as a parent of a very sick child.  My daughter was treated quickly due to her medical instability, but unfortunately she had to be close to death to get that treatment.

Now away at college and "in recovery" my daughter is responsible for her own health.  If she relapses, the story will be different.  It may not have the same happy ending as resources are sadly lacking for her age group (young adults 18 - 25). In the meantime I stay vigilant and continue to research ways in which to help her.

Canada: Eating Disorder Awareness Week (and beyond) Action

Storytelling Template for International Eating Disorder Action Blog CANADIAN HEALTHCARE ACTION

Purpose: These stories will be used to bring attention to the myriad ways in which the healthcare system fails those with eating disorders. They are also used to highlight that full recovery is possible in properly functioning medical and treatment systems.  This balance is important.

Responsible story telling includes not using sensational photos or numbers as these may be subverted for unsafe use and we don’t want that. We also don’t want to reinforce a message that only those who are dramatically thin are sick.

WHO: Briefly tell us who you are and who your loved one is. The more people realize our families/children are just like theirs, the more likely they are to see themselves in our stories.

WHAT: What is the diagnosis, how long they/you have been ill and where the person is now in terms of recovery? Try to tell the story using medical language that people will understand.

WHERE: Be specific about where your healthcare is delivered and who is responsible for delivering that healthcare. Please include your postal or zip code.

WHY: This is the bulk of your story—we want to highlight places along the way that were pivotal---delay in diagnosis, waiting times for services, lack of services, uninformed physicians, hospitals, etc. Discuss lack of education or outdated information given to you by clinicians. If you have gone outside the system discuss the tremendous financial and other sacrifices you have made. Conversely, if you have a story where things have gone well, share what makes your story different from most of the stories we encounter.

FINAL THOUGHTS: We are trying to paint a visceral picture so small details can be important. The word limit is 500 words and if you have non-triggering photos to include that is very helpful. Use of your own name is great, but it’s absolutely fine to use pseudonyms. The pieces will be edited, but overall content/message will not be altered.

Email your story to iedaction.global@gmail.com with a cc to info@nied.ca 

We will be using these hashtags on social media: #cdnpoli #EDAW2015 #IEDAction so please check and retweet these on a regular basis.

Please visit our website, like our FB page, and follow us on Twitter: Our voices are amplified when we raise them TOGETHER!

EXAMPLE

My name is Lisa and I live in Mississauga, Ontario; I have two incredible daughters, an amazing fiancé, and assorted animals. Both my girls have struggled with mental illnesses for many years. My youngest daughter has a diagnosis of anorexia, binge-purge subtype.

Though M. was diagnosed in October of 2011 at 17, we had already been enduring a nightmare for many years. From the time she was 9 or 10 years old, we spent more time in doctors offices and hospital emergency rooms than I can remember, due to complaints of constant stomach upset, constipation, lethargy.  We once spent 15 hours in the ER of Toronto's premier Sick Kid's Hospital when she was 12 because she hadn't eaten anything solid for over 2 weeks, was persistently vomiting and sleeping 15 hours per day. Her anxiety became crippling.

At 15, she started to eat "healthy.” This meant virtually no dairy, no pasta, no bread, no baked goods (and yet she would bake up a storm) and eventually no meat. Her energy levels continued to drop and her hair became dry and brittle, off we went again to our family GP who offered no real help and said she was just a "teenager going through the natural progression of working towards independence.” At 16, shopping for summer clothes and bathing suits my heart stopped and life as we knew it came to an end.  This time our GP suggested, upon discovering a terrifying weight loss of a quarter of her weight that I send my daughter to Africa to "see what starving children really look like."

At no point did our GP say “”eating disorder,” though she did say “willful,” “disrespectful,” “manipulation,” “depression,” and “conniving.”  At the end of my daughter's 16th year we were FINALLY referred to an eating disorder therapist.  Upon diagnosis we were told that on a scale of 1-10, my daughter's eating disorder was so entrenched it was a 15. We were also told that due to my daughters age, she turned 17 days after diagnosis, that we would likely run out of time to save her before the age of 18 when she would become an adult, effectively ending our parental right to save her life.

Even after her diagnosis, one that was clearly delayed due to lack of education on our GP’s part, we were never steered toward good medical or psychological information that was vital to helping our daughter. What we did experience were interminably long wait lists, being denied access to services either because our daughter was to sick or not sick enough and wholly inadequate number of beds in dedicated facilities.

Today I have a daughter who teeters constantly on the brink of medical hospital admissions and still has no real help for her eating disorder. I do what I can to find adequate resources for her and I live with the constant dread that whatever help I may find will not come in time to save my daughter’s life.

This project is collaboration with National Initiative for Eating Disorders (NIED).

Kohl's: We Expect Better From You

In general, Kohl's has a better track record than retailers like American Apparel, Hollister, Urban Outfitters, TopShop and others who consistently promote a thin-bias that is weight-stigmatizing and incorporates messages of shame for those who don't meet a narrow guideline of body acceptability (the type that 5% of women and girls possess naturally).

That may be why we are so disappointed in this offering from the weekly catalog from January15-25, 2015.

(As eating disorder activists we are careful to note at all times the difference between eating disorders and disordered eating as EDs are biological, brain-based illnesses and disordered eating is both more common and is not a pathology. The images we are discussing do NOT cause eating disorders. They ARE harmful to all of us and do contribute to a toxic societal environment that can make recovery from an eating disorder difficult).

How is the message on this graphic tee harmful?

• It promotes calorie-burning as a moral imperative.

• It encourages exercise as a calorie-burning, weight loss activity rather than one important for general health and fitness.

• It sends a message that a female should elevate calorie-burning before all other activities (actually, it's reminiscent of the Maria Kang What's Your Excuse? debacle).

• It sends a message that all those who don't fit a narrow stereotype do so because they are lazy excuse-makers. 

We hope you will join us on Twitter in letting @Kohls understand that #IEDAction is #NotBuyingIt when they choose to market a message to us and to our daughters that promotes a false ideal that an a ability to burn calories defines girls and women. It does not. 

Eating Disorder Hope: Starting A Dialogue

For some time, a group of advocates has been concerned about the content of the website Eating Disorder Hope (EDH). The site is designed to have an educational feel yet many articles were outdated and promoted the debunked psychosomatic family illness model (the eating disorder as an expression of family dysfunction). The situation was similar to the Something Fishy website in that a high SEO ranking means many people searching for information land on this page.

Members of International Eating Disorder Action sought to begin a conversation with queries sent to the Contact Us information on the site and via blog and Facebook comments and tweets on pieces whose content we objected to. Our comments and missives were direct yet never abusive. With all reasonable attempts to open a productive dialogue stymied, one of our members (JD Ouellette) filed a BBB complaint on the grounds the connections between the information and the advertising was not clear enough.

We are pleased to announce that a dialogue began on Twitter with IED member E.C. and that we have seen a big shift in the postings on the site. Thank you to all who helped with comments and tweets. Access to the most up-to-date research, and information about the evidence-based treatments informed by that research, is of the highest priority and we are pleased that EDH has decided to show their commitment to the HOPE portion of their name by publishing content that supports this mission.

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Letter to Eating Disorder Hope sent by Amy Cunningham of IEDAction and their response:

Thank you so much for your willingness to listen, engage and dialogue about the content of Eating Disorder Hope.  It may be helpful for you to understand that our mission at International Eating Disorder Action includes being a watchdog for outdated information and promoting the dissemination of evidence-based information.

We believe that societal viewpoints that consider eating disorders to be disorders of choice, vanity and family dynamics instead of brain-based, biological illnesses negatively impact early diagnosis, access to aggressive, appropriate level-of-care treatment and research funding parity.

As you know, the last few years have seen an explosion in research findings surrounding eating disorders. Still, some clinicians find it difficult to let go of what they “know.” For so long, eating disorder treatment and practice was based on the psychosomatic family illness model and that has driven practice. This is not to assign blame—everyone was doing the best they could with the information they had at the time.

We do have new information now and we need to use that information to promote early diagnosis, access to aggressive, appropriate level-of-care treatment and research funding parity. We have to operate with caution when we share information about eating disorders.

Without line-editing previous posts (as that puts an onus on us to approve content and that is not an appropriate role for us), we feel that a strong editorial policy would give submitters the guidance required.

Questions to ask are:

·      Is there solid and current evidence the statements in this piece are true? Are there citations to verify this?

·      Is there a possibility this piece is reinforcing myths and disproven stereotypes?

·      Does the information in this piece represent solid research or anecdotal evidence?

·      Does the information in this piece promote evidence-based treatment?

·      Does the information in this piece empower parents/carers to help their loved one or does it disempower them by blaming them (even inadvertently) for the eating disorder?

·      Does the piece state that eating disorders are preventable (there is no evidence for this yet)?

·       

An editorial policy such as that outlined above, combined with encouraging dialogue and discussion in the comments without a defensive posture, should lead to positive changes which fulfill the idea of providing hope to those whose lives are touched by eating disorders.

Dear Ms. Cunningham,

Greetings and Happy New Year to you as well!  Thank you kindly for taking the time to submit this invaluable feedback.  We appreciate the constructive dialogue that we have been able to have thus far and gladly receive your suggestions and input. We deeply respect the insight and feedback from our community and the group of parents/survivors that you represent.  

I will be sharing this letter with our organization's president and our other team members, and we will move forward with discussion about how to best integrate the helpful suggestions you have outlined.  We sincerely look forward to collaborating together to further promote our mutual goals and missions.

Thank you again for your time, efforts, and for the tremendous work you are doing in the eating disorder community.

With Warmest Regards,

Crystal Karges

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These are specific blog posts we commented upon as representative of our concerns that while lip service was paid to families not being responsible for eating disorders the message reinforced the psychosomatic family illness model of parent blaming.

Coming Home from College: Eating Disorders and College Breaks by Dr. Gregory Jantz

Overcoming Family Conflict During Eating Disorder Recovery by Katie Thompson, MS, LPC, NCC, CEDS from Castlewood Treatment Center 

Communication Skills for Families in Recovery by Dr. Gregory Jantz

The Link Between High-Achieving Families and Eating Disorders

National Eating Disorder Information Center (NEDIC) Action

January 9, 2015

Meryl Bear, M.Ed.

Director, NEDIC

National Eating Disorder Information Center

ES 7-421, 200 Elizabeth Street

Toronto, Ontario M5G 2C4

Dear Meryl Bear,

Recently you have heard, on Twitter and Facebook and via email, from members of International Eating Disorder Action (IED Action) about concerns we have with your recently unveiled “Zero Calories” awareness poster. It may be helpful for you to understand that our mission at IED Action includes being a watchdog for outdated information and promoting the dissemination of evidence-based information.

We believe that societal viewpoints that consider eating disorders to be disorders of choice, vanity and family dynamics instead of brain-based, biological illnesses negatively impact early diagnosis, access to aggressive, appropriate level-of-care treatment and research funding parity.

We are hopeful that you will be open to a dialogue with us as we are both puzzled by the Zero Calories campaign and concerned over the amount of outdated information we found as we explored your website; we are also troubled by the contention that eating disorders are preventable as there is no evidence to show that to be true.

As you know, the last few years have seen an explosion in research findings surrounding eating disorders. For so long eating disorder treatment and practice was based on the psychosomatic family illness model and that has informed much of the content we see on your site.

We do have new information now and we need to use that information to promote early diagnosis, access to aggressive, appropriate level-of-care treatment and research funding parity. We have to operate with caution when we share information about eating disorders.

We ask that you undertake a review of your site’s content and your mission of awareness by using these guidelines to vet the content.

A review should entail assessing the following:

·      Is there solid and current evidence the statements in this piece are true? Are there citations to verify this?

·      Is there a possibility this piece is reinforcing myths and disproven stereotypes?

·      Does the information in this piece represent solid research or anecdotal evidence?

·      Does the information in this piece promote evidence-based treatment?

·      Does the information in this piece empower parents/carers to help their loved one or does it disempower them by blaming them (even inadvertently) for the eating disorder?

·      Does the piece state that eating disorders are preventable (there is no evidence for this yet)?
Adopting an editorial policy such as that outlined above, combined with encouraging dialogue and discussion without a defensive posture, should lead to positive changes which fulfill the ideas of providing hope to those whose lives are touched by eating disorders.

We are happy to connect by phone or email to hear your thoughts and discuss a timeline for changes; both Mirror-Mirror and Eating Disorder Hope are advocacy and awareness organizations that have made substantial and helpful changes after considering our feedback and we hope you will be moved to do the same.

Respectfully,


International Eating Disorder Action
Web:  www.iedaction.weebly.com
Twitter:  @IEDAction
FB: groups/ iedaction.global, iedaction

Admins: Evelyn Cohen
Amy Cunningham
Tabitha Farrar
Jennifer Denise Ouellette
Lisa Springer