A Mighty Misstep: An Open Letter To A Mighty Girl

Dear A Mighty Girl,

It is a really tough thing when someone--or some organization--you respect and admire lets you down. That's the place the members of International Eating Disorder Action find ourselves in right now. We are sad, we are confused and, if we're being honest (and we are), we are getting angry.

Many of us are followers of your Facebook page and believe tremendously in the work you do. Heck, many of us DO the same work you do--"inspiring the next generation of history makers" as educators and school counselors. It's too early to tell, but it's possible some of us will even go down in history. We are exactly the women A Mighty Girl is encouraging girls to become.

February is National Eating Disorder Awareness Month. You, AMG, had a laudable idea to publish a book list to encourage awareness of eating disorders. That's when things started to go south a bit. Instead of consulting an expert about how and what and why and which books to recommend, it appears the author took a stroll down the aisles of Amazon and picked some things that looked suitable--they've been around a while, the authors are known; that seems to have been the criteria.

It doesn't seem to have been on the radar that eating disorders are deadly genetic, brain-based biological illnesses with a psychosocial component and by virtue of this only an expert would be qualified to make such a reading list for an influential group to distribute.

But hey, mistakes happen and we understand that many people only have a Lifetime TV movie understanding of eating disorders. We have, in fact, been there ourselves in the not-too-distant past.

We are no longer there because either our children or ourselves had an eating disorder and when that happens A Mighty Woman gets educated mighty quickly.

So we know that teaching kids about eating disorders does nothing to prevent eating disorders. In fact, we know there is no evidence eating disorders can be prevented. We know that both Wasted and Wintergirls have cult followings in the pro-Ana/Thinspo communities and are considered ill-advised reading even for young people without eating disorders. We know that the conflation of disordered eating with eating disorders reinforces the idea that eating disorders are a diet gone bad. We know that males get eating disorders. We know that people of color get eating disorders. We know that people with no body-image issues and great self-esteem get eating disorders. We know that eating disorders can be triggered by any negative energy imbalance such as a stomach bug or when wisdom teeth are pulled. We know the belief that controlling mothers, absent fathers and dysfunctional families cause eating disorders is both untrue and persistent. We know that societal misunderstandings of eating disorders hamper diagnosis, access to treatment and research funding parity.

Because this is a matter of life and death importance to us--anorexia having the highest mortality rate of any mental illness--we gave AMG our feedback on Facebook. We also tried to comment on the blog, but our comments were never published, so we emailed. A disclaimer was put in place, but that didn't fully address all our issues and so we asked for further dialogue.

How can it be that AMG is unwilling to listen to the very mothers and daughters the list purports to be helping? How can it be that an organization such as AMG deletes or doesn't publish comments? How can it be that AMG is uninterested in a dialogue with women who are both educators and parents of those with eating disorders? How can it be that AMG ignores eating disorder experts who have reached out?

As we contemplate next steps we are asking ourselves What Would Malala Yousafzi/Eleanor Roosevelt/Sojourner Truth/Hillary Clinton/Margaret Mead Do?

Our answer--it's certainly not to sit down, give up, shut up or go away.

Let's turn this around AMG--it is a sign of strength to acknowledge a misstep, engage in dialogue and change for the better. Let us help you help us. Please.

Sincerely,

The Many Mighty Women (and More Than A Few Men) of International Eating Disorder Action

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.