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: Treatment Should Not Require Luck Part 2

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: Treatment Should Not Require Luck Part 2

I am writing this in support of the “What’s your story?” campaign put forth by the National Initiative on Eating Disorders.  As a survivor of Anorexia Nervosa, I support the mission put forth by NIED to educate the general public on the severity of living with an eating disorder, and the lack of resources supporting those who do.

 My eating disorder has been a life-long journey.  Although it only took two years for the physical symptoms to ruin my life, I lived 26 years believing absolutely nothing of myself.  The official diagnosis of my eating disorder was Anorexia Nervosa – Not Otherwise Specified, meaning there were multiple symptoms to my eating disorder (purging through self-induced vomiting, purging through exercise, no food intake, and laxatives).  The effects were almost immediate, and before I knew it, my health quickly started to fail me.  Not only were the numbers of my heart rate, body weight and BMI extremely low (and scary), but emotionally I felt unstable, numb, experienced loss of memory, fatigue, guilt, shame for body, and the list goes on.  As much as I knew things weren’t right in my life, the eating disorder tricked me into believing that gaining weight was more scary then how I was living my life at that moment.  I am thankful every day to have such supportive friends, and am amazing family who cared enough about me to get me the help I needed, even when I was adamant I had everything under control

My journey to recovery started at the Kingston General Hospital in Kingston, ON in July of 2012.  My first assessment at KGH was an evaluation with the nurse practitioner of the eating disorder program as well as the head psychiatrist.  Their first recommendation for me was to be admitted into an inpatient program in a hospital.  Unfortunately for those struggling with eating disorders in Ontario, there are only two hospitals with such a program, Ottawa General Hospital and Toronto General Hospital.  I was told that the wait list was two years long, but until then I could come once a week to the out-patient program at KGH.  Considering I thought the nurse practitioner and psychologist were “crazy” for wanting to admit me, I reluctantly began the out-patient program.  After approximately two months, I stopped attending the program as I found the environment to be too competitive and knew my symptoms were getting worse because of this.

 In the meantime, my parents, who were scared beyond belief, paid out of their pocket for me to see a private psychologist at home in Toronto who specialized in eating disorders.  I saw this woman twice a week for approximately one month.  I appreciated this woman as I could be completely honest with her about everything I was feeling, but felt an immense amount of guilt.  My parents were paying a fortune for this service, and I didn’t know how/believe I could get over this eating disorder.  As much as I loved going to these sessions and seeing this woman, and as much as I wanted to get better for my parents who were so supportive, I knew there was no one “forcing” me to eat, and I could not be this firm and disciplined with myself.  I still felt extremely trapped and consumed by this disease.

It was in October of 2012, approximately three months after being referred by the psychiatrist at Kingston General Hospital, did I get a call to for an assessment with Dr. Bissada of the eating disorder program at the Ottawa General Hospital in Ottawa, ON.  At the end of my assessment it was clear to Dr. Bissada that I needed to be admitted to the inpatient program, and as soon as possible.  The fear of my health failing me before I could get a bed in the hospital was a reality, one which scared my family to death.  I started to make weekly trips to Ottawa once a week for the in-patient readiness program.  There were approximately six other individuals who came to this programme each week, all of whom appeared to be in the same health conditions as myself.  More scary, all of whom who were also in complete denial that anything was wrong. 

Two more months went by, and in December of 2012 I was admitted into the inpatient program at OGH.  I will never forget the day my life changed, and for the very best way it could.  Making the choice to be admitted was the scariest decision I’ve ever made, but also the most important decision, as this program literally saved my life.  There are only six beds in this program, and as I learned more and more, those beds are reserved for only the sickest of the sick.  This is not something I am proud of, but something that I thank God for that I was able to get one of those beds.  Without the help of OGH and the wonderful doctors and nurses, I would not be able to share my story with you today. 

It saddens me that TOO many people out there, who struggle with the same eating disordered thoughts that I once did, do not have this opportunity to save their own lives.  Those living with eating disorders often do so in shame and with guilt as the famous lines, “just eat” are thrown at us as our only solution.  If we could “just eat”, then Anorexia Nervosa would not be a problem.  Unfortunately, the general public, anyone who hasn’t lived with an eating disorder, does not fully understand the experience of what it is to do so.  I am blessed with a family who tried so hard to support me, and to save my life, even if they had no idea where to begin.  Unfortunately, not every family is as supportive as mine, and there are many individuals who struggle with this disease alone.  Resources need to be created, or allocated to not only those who are struggling, but also for their families and friends who are desperately trying to know how they can help.

I recognize this post exceeds the 500 word limit, but I did not want to delete any of my story to save space.  The best part, which I have yet to share, is that thanks to OGH and the hard work I put into the program, I can proudly say I am two years into my own recovery from Anorexia Nervosa.  It is not easy, and every day is work, but I have learned that I am, and my life is, totally worth it.  I pray for the day that all those who struggle can learn to accept this truth as well.

Canada: Treatment Should Not Require Luck Part 1

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: Treatment Should Not Require Luck Part 1

I am writing this account in response to the NIED's effort to secure funding for adequate treatment and support of patients with Eating Disorders through our healthcare system.

In the summer of 2012 our daughter was diagnosed with Anorexia Nervosa - not otherwise specified....she was 26 years old. We were told by professionals that there was good news and bad news. The good news was, they felt our daughter would probably respond to an inpatient treatment program - the bad news was, there are only 18 beds in Ontario and the wait list is 2 years long.... our daughter would not survive the wait. We immediately starting researching other facilities both in Ontario and the United States but were refused help as my daughter's BMI was too low; meaning she needed urgent medical care which private facilities could not give her.  Our daughter's fate was sealed - she was going to die because of underfunding of eating disorder treatment programs in our hospitals.

Our story however, does have a very happy ending. The inpatient eating disorder program at the Ottawa Hospital runs on the premise that if patients are not "buying into" the way the program is run, they are asked to leave.  By some miracle, my daughter was admitted Dec. 6th 2012* and has been recovering since March of that year. Through a lot of hard work on my daughter's part (of which we are very proud) and the fantastic care, training and medical attention she received at the Ottawa Hospital, she is healthy.....and alive! Her days are not without struggles, but because of the exceptional treatment she received, she has "tools" that help her work through them. Before admission to the hospital, my daughter was seeing a therapist who specialized in eating disorders.  I asked her a few weeks ago, "If you were not admitted to the hospital, but instead kept seeing the therapist, would you have recovered?" Without hesitation her answer was "No.  The therapist didn't make me eat like I had to in the hospital!".

My daughter was saved - it is tragic that everyone with an ED does not have the same opportunity she did.

*I have thoughts on why my daughter was admitted so quickly, but space prevents me from listing them.

USA: #IHadNoIdea so many people had no idea males get eating disorders too!

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!

Sally and Nate's Story

When my son, Nate, was 16 years old (fall of 2006), he started showing signs of an eating disorder. January of 2007, when he texted me from a high school trip to NYC and asked me how many calories black coffee had, that was my biggest wake-up call. He actually asked if I could get him an appointment with a dietitian because he knew something was wrong and he wanted to eat healthy. It took about a month to get into the dietitian and by the time he did, the dietitian told both my son and me that he had a serious eating disorder and needed help right away, probably residential treatment. That scared him, not only because he was physically dying, but because he was so ashamed and embarrassed. He thought eating disorders were just a female thing . . . and he is a straight male! 

He didn't want anyone to know, but, by the looks of him, EVERYONE knew he was very sick. After his nutritionist gave us a diagnosis, I immediately called his pediatrician who referred us to Laureate Eating Disorder Center in Tulsa, Oklahoma (where we live). He began outpatient treatment because Laureate only has an all-female residential program. 

He had an outpatient team of a psychiatrist, psychologist, and a dietitian, but after a few months Laureate advised us that he needed more intensive residential treatment. (He was hospitalized once for dehydration & another time for over-hydration, which gave him water toxicity which led to the start of some of his internal organs to shut down).

I was a mess inside of my head at this point, scared out of my mind! Laureate and I went searching for an all-male residential eating disorder program. The only one in the country in 2007 was Rogers Memorial Hospital's Ed Residential Program in Oconomowoc, Wisconsin (between Milwaukee and Madison). I called and they had a waiting list; when a bed finally opened, I flew him to Wisconsin. He was sooooo sick by then that he was ready to get this kind of intensive treatment. 

Leaving him there, so sick, and me living 763 miles away (11 - 12 hour drive), was not easy, but it was the only thing the doctors and I felt could be done to save his life. He ended up in Oconomowac, Wisconsin at Rogers Memorial residential ED program for males. And, thankfully, it was the right choice! Rogers ED center helped him tremendously and I will forever be grateful to them. 

To back up a little . . . before he went, he looked like a walking skeleton. He had been freezing all the time (even when it was hot indoors or outdoors)because he'd lost all his fat and some muscle. He was using laxatives, & later I found out that he was not only restricting & over-exercising, he was also purging. It all came clear when I noticed his strange eating & exercise habits. He'd go to the grocery store and be there for hours because he was reading the nutrition & fat labels on everything he considered buying! 

Anyway, the residential program told us it was mandatory that he stay at least one month and then they would re-evaluate. Well, he ended up staying there for ten weeks. Some of my family members and I went to every "Family & Friends" weekends that the program had. When my son finally returned to Tulsa, he move in with me and went to an IOP(Intensive Oupatient Program) at Laureate for eight months and he became fully weight restored. 

He still struggled mentally, but Rogers' ED program gave him the tools to stay healthy--one important one was that he must stay on a meal plan, which did. However, ED was always in his head. He begged to go away to college, which scared me and, honestly, it scared his treatment team in Tulsa, too. But he really wanted to do it (he'd gotten a academic scholarship), so he went to Oklahoma State University, which was only about 1 hour, 20 minutes away from Tulsa. That way, I could get to him easily and he could get to me if necessary. 

Anyway, he struggled with ED, but remained healthy, joined a fraternity, became Vice President of his fraternity and graduated with a 3.8 in Chemical Engineering. He is now living in Houston, working for Chevron-Phillips Chemical. He lives in a town-home with some other engineers and is doing very well. While in college, he started a Project Heal chapter, supported by NEDA & his college. It was a support group for students with ED or students who wanted more information on ED. He organized several NEDA walks in Stillwater, Oklahoma. 

He will be 25 years old in April 2015. Yes, ED still bugs him, but my son keeps fighting and WINNING!

I flew to Houston in 2014 to walk in the Houston NEDA walk that my son was involved in. He was asked by one of the organizers of the event to deliver his ED story in a speech to the other walkers before the walk. I am so thrilled because my son is my son again and instead of being in denial about Ed or trying to keep it a secret, he is now an advocate for helping people with ED. 

We both went to the annual NEDA conference in San Antonio in 2014 and plan to go to the NEDA conference in San Diego Oct 1 - 3, 2015. He is so busy at work, but he is still involved in a program in Houston called "Mentor Connect" & last I heard, he was mentoring (by email) a male in Australia who has ED. Both he and I want to be advocates that help others with ED. I know that ED is never really going to stop bothering my son, so there is always a chance for relapse, but I also know that my son knows that, as well so it helps him to stay healthy by helping others to get and stay healthy! I'm very proud of him!

USA: #IHadNoIdea not all #eatingdisorder treatment was #evidence-based

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!
Elena's Story 

My name is Elena and because we are still very much in the fight to bring my daughter J (15) from the depths of this hell called an eating disorder, this is an abbreviated version of our story...

Right now J is diagnosed OSFED (Other Specified Feeding or Eating Disorder) with co-morbids of anxiety and depression. Two years ago it started with bulimia and the co-morbids soon followed. We had no warning signs, just a journal found by her uncle.

I live in California's beautiful Central Coast and J's dad  lives in Las Vegas  where she attends school; we share custody. Both locations we were discover would let both us and J down in quality of care in treating eating disorders.

In the last two years it took J's first therapist 6 months to realize he was in over his head and say she needs someone who treats eating disorders (EDs) and knows medication; what we didn't know was that treating EDs and specializing in evidence-based treatment are not the same. 

It feels like we lost another year and a half seeing more therapists, teen psych unit stays for self-harm and two residential stays to try and beat this finally realizing at worst it strengthened ED at best it broke the cycle of behavior for maybe a few weeks, as ED is now entrenched and can manipulate most any therapist, dietician, or doctor. 

We finally found evidence-based care for J this year and hope it will turn things around, but that leads us to another problem, insurance.

It really hits you hard to hear your insurer (because we have coverage for J through both dad and stepdad) say things like " that's not covered, wrong diagnosis" or "maybe switch to PPO so more than urgent care covered out of state." With all the bills that have accumulated and us even splitting those copays, etc do they think we are choosing to struggle with HMO as it is or that J chose this illness? Do diabetics who are covered choose that?

The implied cycle of blame from health care providers and insurance is shocking. The lack of support in our communities for parents and those suffering like J (only 15 with no positive peer support) is heartbreaking.That those with the most power--the providers, insurance and lawmakers leave it to us the parents to try and change this system, all while we fight to save the life our child, is unimaginable.

USA: #IHadNoIdea One Did Not Need to WANT Help to BE Helped

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!

Our family in May 2013: It was a true celebration on many fronts--including the celebration of recovery for little sis and the joy of every one of us truly enjoying the cake. Because our family was never assumed to be the cause of Kinsey's anorexia, she was able to access the love and support of her parents and brothers and sister throughout her journey. 

In early 2012, my happy, healthy, bright and well-loved youngest-of-four 17-yr old daughter began to lose weight rapidly and experience a lot of stomach issues—the foods on her can’t-eat-this-it-hurts-my-stomach list quickly became longer than the list of what she could eat. Our pediatrician, a savvy and sensible woman, talked to my daughter about these issues over several visits and within a couple of months, after ruling out other possible causes, came to the conclusion the diagnosis was anorexia nervosa. Kinsey, the patient, disagreed and in fact never realized she was sick until she was well on her way to not being sick.

The doctor told us we would be going to the topnotch UCSD Eating Disorder Center for Treatment and Research. When I asked if Aetna would cover it she said she would fight for it. She explained UCSD was the only local facility utilizing a Family Based Treatment (Maudsley) model and research showed that to have the best chance for success. Thankfully, Aetna quickly agreed to write a single-case agreement and treatment started within a week.

Recovering from anorexia nervosa is never easy; eating disorders are brutal, persistent and misunderstood by most of society.  You didn’t know they are genetic, biological, brain-based disorders thought to be triggered by a period of malnutrition?  You are not alone. Fighting stigma is hard when you are also fighting for your own or your child’s life.

My daughter had an early diagnosis*, top-notch treatment and she still lost a semester of high school and one of college to her disease; she continues to be followed today to ensure her recovery stays solid. She fought hard to be where she is today (18-months of independent recovery away at University and studying abroad currently) and she and we are the lucky ones—we’ve had access to treatment that is evidence-based and that we could afford.

Our story is atypical; I’ve spoken to few people whose path has been this direct. Most struggle with uninformed physicians which delays diagnosis. Most have to search, often fruitlessly, for a treatment program that is both evidence-based and accessible. Most have to battle their insurance company endlessly. Most have to follow paths far more rugged than ours (which was decidedly no walk in the park).

Today I fight because parent pioneers like Laura Collins deserve to know there are those committed to carrying on their work. I fight for the opportunity to recover my daughter had not to be an anomaly. I fight for the access to treatment every person affected by an eating disorder deserves. I fight because I know too many mothers who have lost their children and too many who face that prospect. I fight because the researchers who have taught us much in recent years need and deserve funding on par with what other diseases get. I fight so people will understand this disease has nothing to do with vanity or choice and everything to do with brain wiring. I fight because eating disorders are serious and there is hope and together we will raise our voice to ensure there is progress.
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* For more information on the importance of early diagnosis and treatment, please check out this article, "Anorexia Nervosa: New research underlines importance of getting help before chronicity sets in.