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

 

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: 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!

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: The Very Brink of Death

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!

Helpless

My name is Tara & I live with my husband and two daughters Hannah (16) & Quinn (11) on Vancouver Island, BC.  Our oldest daughter was diagnosed with anorexia in November 2012 at the age of 14.

Prior to diagnosis our family led a “normal” life, we worked, took our girls to extracurricular events, socialized with friends, volunteering at school functions etc.  When we had days off together you would find us up the mountain or a beach spending time together, enjoying life.

November 19, 2012 a simple call from the school reporting Hannah had missed a class created a string of events that blew Hannah's secret open.  Quickly I was seeing clearly the answers to all the nagging question that I had been asking myself.  Hannah had an eating disorder.  Life as we knew it was about to take a drastic change.

In less than a week we had seen our family doctor and agreed and diagnosed Hannah with anorexia. Her name was being referred to those who could help.

Two and a half month later, intake information appointment at MCFD only to be sent somewhere else, referrals to psychiatrist and dietician still sit on the wait lists, numerous calls to ED organizations, a private ED treatment center (we did not meet age criteria) Hannah was sicker than I ever dreamed possible.  My daughter was dying and nobody could help, we were on the wait list.

Feb 8, 2013 I looked into Hannah's eyes and saw death, our doctor saw it and told her.  I was scared, he was scared and the ED wanted to take Hannah from us. Still on the wait list at BCCH for a consultation appointment, I could not wait for help from them.  Armed with Gatorade and Boost, blankets to keep Hannah warm and our doctor’s home phone number I spent the next week at Hannah’s side, pleading with her to take a sip every few minutes. I slept with her at night so I could keep a hand on her chest so I would know immediately if she stopped breathing.  Her breathing so shallow I hardly slept for days because I thought every breath was her last.

We were finally seen at BCCH mid-March.  I had taken a leave from work to be home full time to refeed Hannah.  We as a family (and it is a full family effort) had managed to pull her out of the critical medical state she had been in.  We had her eating food and she was gaining weight.  BCCH added us to their out patient program.  We would travel back and forth to Vancouver once a week.

Eight months of outpatient treatment and they are comfortable to discharge her as a patient.  I have confidence in our family doctor and I have secured a therapist at NARSF in Nanaimo.  I hope and pray we will continue on the recovery road.

Things are okay(ish) for the next while, Hannah struggles but is stable and she likes her therapist who she sees and has returned to school.  Few months later her therapist must leave for personal reasons, there is no replacement. I now fight for somebody new; I'm stuck in a government nightmare of boundary lines.  There is nobody to see in Nanaimo & Duncan is not our catchment area.  Few months later the position at NARSF has been filled.  We hope that there is a connection between Hannah and her new therapist.

The last year has been a constant struggle to keep Hannah stronger than the Eating Disorder.  It haunts her and is gaining strength.  We continue to fight for appropriate treatment and programs. We are unable to access some programs because we live a five-minute walk north of a boundary line, she is unable to attend school because of severe anxieties, and her therapist isn't connecting.

As February 8 approaches, the day I have named “Living Day”, the day almost two years ago Hannah surrendered enough to follow my lead and take a sip of Gatorade then another and then one of Boost and lived through the day, as that day approaches I am scared. I am scared because this nightmare is not yet over, relapse is strong and two nights ago I saw ED alive and well in Hannah, she refused to eat. Today I try to make arrangements to have her put on a wait list for a program that she is not yet old enough to participate in, but maybe by the time she turns 17 her name will be at the top of the list . . . I am unable to write an end to this yet but I know what I am fighting for and I hope our families next 'Living Day' will be one to enjoy.

Canada: NIED and Amy's Story

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!

My Story With Amy

As the founder of NIED - the National Initiative for Eating Disorders – I am here today to speak on behalf of hundreds and thousands of Moms and Dads, caregivers and families just like ours.

As parents of a 29 year old who has been suffering with Anorexia and Bulimia for over 14 years, my husband, Len and I have done everything possible – emotionally, physically and financially to provide and help our daughter Amy, and it is never enough.

Our experiences of helplessness, frustration and ultimately anger fueled me to want to create awareness and take action regarding the bizarre and unforgiving world of Eating Disorders. The pain, for sufferers and their families, is insurmountable. The stress and strain on families is extreme, horrendous and devastating.

There is no system in place to help our child – yes, at 29 she is a child with not only an Eating Disorder, but on Ontario Disability because she cannot work, paralyzed with anxiety and depression and still expected to navigate the health system for help because of her age. Impossible situation.

 EATING DISORDERS KILL.

THEY HAVE THE HIGHEST MORTALITY RATE OF ANY MENTAL DISEASE.

Yet unlike depression, schizophrenia, anxiety, and mood disorders, Eating Disorders have NO PUBLIC PROFILE. Eating Disorders are a MENTAL ILLNESS but they are seldom mentioned or acknowledged under the umbrella of mental illnesses. Eating Disorders are NOT on the mental health radar, programs, campaigns or agendas.

Like so many other mothers in this province and country - I have been running a 24/7 do-it-yourself treatment center for her. There is no affordable warm, fuzzy place of healing for her to be in or go to, other than our home and family support. I know and she knows she should not have to deal with anxiety, binges, depression, mood fluctuations on her own, trying desperately and so hard every single minute not to give in to the loud, noisy, forceful voices in her head that lead to more binge behaviour.

I started NIED just over 2 years ago and have been operating on zero funding to create Awareness of Eating Disorder sufferers and their families and to ultimately change and improve the system in Ontario and across Canada.

In closing, and with her permission, I will share Amy’s words from her journal…

Sept 2011…I feel unmitigated fury ripping through my body. Nothing is ok. Nowhere is safe. I hear blood thumping my eardrums, I feel a blazing hot scream trapped in my throat and simmering dangerously. I am cross-eyed with rage toward myself for being alive, toward everyone else who is functional. I want to take a knife and slash my body. Carve off the fat places until only bone remains and everything is quiet. I want to cry, which only infuriates me further. I want to kill myself but don't have the courage, which again ignites the anger. Weak pig worthless ugly insignificant despicable revolting cow.

The minute I had my bite of pizza the chaos in my head stilled. It was instantly balmed like aloe on sunburn. The silence was blissful. And then all too soon the eating and throwing up was over and a shock wave of anxiety seized my body.

Legs like rubber, hands shaking, vision blurred I walked like a dead weight to buy more food.

   

Later that afternoon, after much protest and procrastination I eventually agree to let my parents take me out for coffee. Its the first I've seen them all week since depression rendered me unable to let them love me. My body is with them but I am vacant and nowhere to be found, staring into a murky void only I can see while I habitually check my pulse. It beats the word fat. Fat. Fat. Sometimes its a slow taunt: fat...fat...fat.... then it speeds up: fat, fat, fat. My parents try to make me smile. My heart smiles at this but my lips don't follow suit. Its like my face has been botoxed into expressionless paralysis. My mom and dad continue to talk while I continue to sip my coffee and try focus my eyes.

Feb 2014 . .  . Its the sense of profound fear that I’m not going to make it out of this eating disorder - I'm not going to be the 1/3 that recovers; I may even be in the 20% that die. Mom, you are changing the Eating Disorder world in Canada and perhaps the only reason I ever existed was for you to create colossal change. But what about me, now? It will be years before any such dream treatment facility will be brought to fruition in Canada.

As Amy’s Mom, here I am, on behalf of NIED, advocating to make change and bring public awareness for Eating Disorders - just as Terry Fox and his mom did for cancer.

Thank you for supporting our efforts by doing your part.

Wendy Preskow – 416 859 7571 wendy@nied.ca