Nine Truths About Eating Disorders

International Eating Disorder Action is proud to have worked closely with prominent eating disorder organizations and in collaboration with Dr. Cynthia Bulik, PhD, FAED, to create the “Nine Truths about Eating Disorders.” The major goals of creating this unified message are to raise public awareness, increase understanding, break the stigma, and ultimately to lead to early diagnosis and intervention. 

The current “Nine Truths About Eating Disorders” document is based on Dr. Bulik’s 2014 “9 Eating Disorders Myths Busted” talk at the National Institute of Mental Health. You can click here to watch her speak at the National Institute of Mental Health.

To download the PDF of this document click here and share!

To read more visit the pages and read the press releases from other cosigners:

AED, F.E.A.S.T. NEDA, ANAD, EDC, MEDA, BEDA, REDC, EDPS, IAEDP, Project Heal, T-FFED

Also read these articles to learn more:

The Examiner

Newswire

Newswise

Buzfeedy

 

Consumer Action: How about we DON'T "Rescue the Anorexia Girl" by throwing food at her?!

Amazon and SmartTouch Media Fail!

Consumer Action: How about we DON'T "Rescue the Anorexia Girl" by throwing food at her?!

Thanks to a mom in the U.K. for alerting fellow parents at Eating Disorder Parent Support and International Eating Disorder Action for bringing this to our attention. The mocking of eating disorders is a direct contributing factor to societal lack of understanding that eating disorders are serious, genetic, brain-based illnesses with a psychosocial component related to temperament. These are treatable illnesses and yet anorexia has the highest mortality rate of any mental illness--and societal misunderstanding contributes to that. 

Please join us in emailing Amazon through their "contact us" function and doing the same with the App Development company (scroll down) and in expressing your dismay on Twitter.

Canada: Four Beds are Simply Not Enough!

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. 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!

Canada: Four Beds are Simply Not Enough!

I had to give up my apartment, find shelter for my cat, and leave the little professional and social supports I had to in order to receive treatment hours away from my home, my life.

Having struggled with both severe anxiety and an eating disorder for over half my life; I don't know how I found the courage to embark on such a journey to seek treatment.

After waiting six months to even hear if the hospital got my referral, I was directed to attend a weekly group meeting in order to prepare for the intensive three stage eating disorder program. This meant I would have had to commute four hours by public transit or have my father drive me part way. It was further recommended that I relocate to the city so I would to be able to take part in the outpatient portion of the program which was to be completed after two months of inpatient treatment.

A month before my admission I packed up my apartment, left my 15-year old cat with a friend, and with a mixture of great anticipation and anxiety, left the home I had lived in for seven years. I was leaving the security of the comfortable turmoil I was accustomed to living, for the possibility of a new positive and productive life.

Being ill for so many years I have never really been able to live a “normal life” finish school or hold down a full time job, thus having to be supported by living off of disability. 

The financial burden associated with the treatment program was high. I had to pay for housing and storage of my possessions during the inpatient portion of the program and so I would have a place to live during the intensive day treatment portion. This was also in addition to the costs of transportation and the additional food costs that were mandatory for the program.

The inpatient program was located inside the psychiatric unit and had only four beds. Space is very limited. Outpatients followed the same program but were able to leave after dinner. In total the group of approximately 14 patients and two staff were literally squished around two big tables at meal times. It was difficult to eat without bumping elbows. Group rooms were located outside of the unit so we would be paraded out into the mental health outpatient waiting room and down the hall several times a day.

I am very grateful to have had the opportunity; however, due to the narrow scope of the treatment modality, other comorbid health concerns which could impact the success of treatment were not adequately managed . Many people with eating disorders have other comorbid mental health conditions, (e.g.: anxiety, depression, OCD, etc.…) myself included. 

If programs focus solely on eating disorder treatment and fail to properly support the person as a whole, then this leads to greater chance of relapse. Unfortunately, this is exactly what happened to me, I started to slip even before I left the program.

Three years later I am again looking for treatment and am not pleased with the very limited options I have in Ontario.

It would be beneficial to have residential treatment in Ontario that is publicly funded. A place conducive to repairing the holistic health of each individual person. Just because we are diagnosed with the same disorder does not mean we are carbon copies of each other.

This disorder affects a wide range of Canadians. There is not enough help in our communities. Currently, people are forced to put their lives on hold in order to receive treatment, waiting until they are deemed sick enough, or not getting any help at all. We need to stop ignoring eating disorders, closing our eyes, and letting someone else handle it.

These are people who have so much to give the world but are being held captive by the most powerful of forces--their own brains.

Canada: Raise your VOICE . . . TODAY!

This is a fantastic opportunity to ensure eating disorders, the deadliest of all mental illnesses, will be recognized in this action plan.

http://www.mentalhealthcommission.ca/English/mental-health-matters

Suggested "asks" from our partners at the National Initiative for Eating Disorders (NIED):


Canada needs a National Strategy for Eating Disorders as there is no statistical tracking of Eating Disorder sufferers.

a) Canada does not know the numbers of sufferers
b) How long they are waiting for treatment
c) Who is getting the treatment
d) How long are the waiting lists 
e) Diagnostic billing codes need to be better defined

· A national research strategy is required to identify effective 
ways to scale up the implementation and dissemination of best practices in the treatment and prevention of eating disorders 
across the country. 

· Guidelines are required to establish acceptable levels of service, wait times, and training requirements for service providers. 

· Infrastructure is required to build capacity for the delivery of 
timely and age appropriate evidence-based treatment and support services for eating disorders spanning prevention, specialized outpatient treatment, intensive treatment, and residential care services.

Canada: Recovery Takes Longer than A Few Weeks

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. 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!

Canada: Recovery Takes Longer than A Few Weeks

I have been the stepmother of a young adolescent since July of 2011. She was seventeen when her father and I married, and had already been suffering from bulimia for two years; she would regularly binge eat and throw up afterwards. Sometimes as many as six times a day. Initially, I think she started binging and purging to stay thin.

In early July of 2013, she had an appointment for an evaluation at CAMH. When we arrived at 11am she had both drugs and alcohol in her system and were told that the clinic would not offer any eating disorder treatment because of this. We were told that she must be drug and alcohol free before any treatment could be started. At the time, we felt clueless as to how to get her to adhere to his condition.

Just a couple of days after this, her father called 911 as she told him that she couldn’t remember how many prescription pills she had taken. She was admitted under form T1.   She was then admitted to the alcohol detox program at CAMH which she attended for four days and was released.

Between July and September that year,  she went to live with her Mom, who attempted to control her eating disorder by placing her own bed in front of the refrigerator. She did this so that she could guard it overnight, in order to stop her daughter from binge eating and purging.

Around the middle of September, she was accepted to live at the Ingles House with five other young woman. She continued to be drug and alcohol free at this time, but was receiving no support regarding her eating disorder.

Just a month later, in October, she was asked to leave the Ingles House due to her disruptive eating disorder behaviours.

In November, she came back to live with us at our house and stayed until late January of 2014. Her eating disorder seemed  worse than ever. Finally, in February 2014, she was placed in an inpatient program at TGH. She started to show great improvement, but it seemed like too little too late; we had waited such a long time for her to finally receive the help she needed.

At the end of February she was moved on to the outpatient five-day program. She did fairly well, except for some “slip ups”. We tried to get some information from the program at TGH to help with her recovery process as her caretakers, but none of the administrators or doctors responded. The only source of direct information we were able to get  was at Sheena’s place and from the internet. She then moved on to an outpatient two-day program. in March, and in April she was dismissed from this program.

After the outpatient treatment stopped, her eating disorder worsened again. We paid for some private therapy sessions, but she showed no improvement at all.  We finally resorted to removing all of the food from the house. In October she moved out to  share an apartment with a girl-friend.

In February, 2015, she admitted to her father that her eating disorder was totally out of control and that she was afraid for her life. She was dangerously thin. In an attempt to try and help her, he went to TGH to find out if she could again be admitted into the eating disorder program. Only because of his efforts, was she evaluated on in late February and started on a three week, five-days-a-week outpatient program at TGH at the beginning of March. 

The question remains: What will happen after the three weeks are up?

It deeply concerns me that a person, and especially a young adolescent with a life-threatening eating disorder, is not able to understand the protocol to be followed at CAMH. There is no communication at all to the caretaker or parent unless written consent is given from the patient on the hospital form by the doctor in the presence of the caretaker. This system creates a dangerous situation for any person suffering from an eating disorder as it meant that it is hard for them to continue treatment once they are dismissed from the inpatient facility.

I question why there are there so few inpatient beds for people with eating disorders available? The inpatient program really made a difference, but because there was never a follow up treatment or involvement plan for the caretakers, it had little effect in the end.

Canada: Where Treatment Protocols Don't Make Fiscal Sense

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. 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!

Canada: Where Treatment Protocols Don't Even Make Fiscal Sense

I was diagnosed at 16 years old by a psychiatrist I was referred to at a hospital in Ottawa. The meeting lasted no longer than 12 minutes and I was out the door unsure of what step to take next. I had to tell my family doctor the diagnosis myself and explain what little I knew since the psychiatrist did not follow up or contact my GP.

Then on began my battle with the system and multiple eating disorders. As things got worse and my parents were kept in the dark I stopped going to school and demanded to be homeschooled. Meanwhile I slept all day, rarely ate dinner and exercised all day. I had been waiting for a referral to CHEO for 8 months now and I was to be turning 18 five months after my set assessment date. That would be enough time to tackle the disorder right? Wrong because I would not get that chance.

My family and I arrived at CHEO and were told my appointment had been canceled but we had no idea. I was told that the doctors felt that I had more of a mood disorder and that they would not be helping me. Devastated, embarrassed and confused I strived to become more sick. To fit the mold in order to receive proper care.

Things only got worse and my mental and physical health continued to deteriorate and I was barely getting through the average day of grade 12. My Mom ended up contacting Dr. Spettigue from CHEO and explained to her the neglect that went on with my so called referral. By the time I finally met Dr. Spettigue I was ambivalent towards life and recovery. I did not feel I deserved or need recovery.

Thankfully she was able to see and understand that I needed intensive care immediately. Unfortunately for me the program at CHEO was full and to no surprise I had no interest in going into a program that did not think I had an eating disorder. So Avalon Hills in Logan Utah was brought up and she made the referral with my psychologist to have me leave for residential treatment as soon as possible.

It only took a month or so and OHIP came back confirming they would pay for my treatment. I was overwhelmed, excited and unsure. I dove into the program and was there from November 19th 2012 until January 30th 2013. I discharged 2 days before my 18th birthday. I had an option to continue treatment at the adult home or go home and finish grade 12 on time. So of course I was ready to get the heck out. Too bad for me because I came home to a new and final semester of high school and I had no support outside of my home from processionals and I relapsed 2 1/2 months later and wound back at the same state I was before treatment.

There are two ways to look at this. If I had of stayed in treatment for a few more months I might of been in a better state and if I didn't and came home to the system with a proper team then maybe I wouldn't be 20 years old and still dealing with all of this. What would have been best is if I could have done recovery at home so my tradition was not so tough.

I live with a lot of regret and guilt but is it my fault that I have not received the care I need for the correct amount of time? When I left treatment I was still into my disorder but was high on the fact that I had freedom as an 18 year old. If I could go back to that day and did things differently I would.

I hope that our system will finally offer better long-term care here and that when treatment is through recovery isn't. I want men and women to have a different path than me.