USA: #IHadNoIdea Weight loss and a "suddenly healthy" BMI could indicate illness and neither did the DOCTORS!

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!

Tara-Leigh Tarantola thought she knew what a person with anorexia looked like: "This really tiny, little, thin girl who won't eat." In other words, not her son, Zachary Haines, a happy-go-lucky teenager who once had a football player's bulky build.

But when Haines was hospitalized last spring after dropping more than 100 pounds, Tarantola for the first time heard the diagnosis applied to her child.

"I broke down because I couldn't believe that a doctor was telling me that he could have died at any moment, yet all of these other doctors wouldn't even take me seriously," says Tarantola. She had repeatedly pleaded with a primary-care physician, two endocrinologists, a liver specialist and nutrition experts to address Haines's exercise and eating patterns, which she knew were making him sick. "They kept telling me how wonderful it was that he had lost 100 pounds."

Like many people with eating disorders, Haines had restricted his caloric intake, exercised excessively and obsessed over his physique. He was irritable, constantly cold and doubled over with stomach pains after eating. At one point, his pulse dropped to 26 beats per minute (anything below 40 can send someone to the emergency room).

"All of the signs were there," Tarantola says.

But because Haines was once considered obese and never dropped to what the body mass index charts indicate as "underweight," his dramatic weight loss was overlooked, even applauded. For more than a year, the clinicians "didn't seem to think anything was wrong," says Haines, now a sophomore in recovery at Temple University in Philadelphia.

The above is taken from a timely and fascinating story on the American Psychological Association Website that reflects on how our focus on obesity is meaning missed diagnosis on eating disorders. In the co-ed online support group Eating Disorder Parent Support we consistently hear stories from parents who are worried about their children's new eating habits, but have concerns brushed aside because their child is "still on the chart." 

BMI charts don't take individual growth patterns into account and this is a dangerous practice that must be halted. If a child is always in the 50% for height and the 75% for weight, a drop to 50% and 50% is an enormous red flag that must be looked into. When weight drops from the 95% to the 5% the fact that 5% is "still on the chart" means nothing in terms of health.

One of the most important pieces of work we Eating Disorder Awareness Advocates and Activists have in front of us is to get an appropriate quantity and quality of education on eating disorders into medical schools. Eating disorders have the highest mortality rate of all mental illnesses, greater even than some cancers, and still it can took Tara-Lynn a year of searching for answers to get someone to recognize what should have been one of the first things looked for with her son's symptoms.

Eating disorders happen to males, they happen to people of color, they happen to people in non-Westernized countries and they have happened in all eras. When a zebra walks into a room, a doctor needs to recognize it as a zebra--this is, after all, why go to the doctor.

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.
.

* 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.

Canada: Recovery Cannot Be Halfway

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!

Recovery Cannot Be Halfway 

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 - but when I did, it was even more of a challenge to find the right help to recover.

After waiting six months to hear from the hospital about my referral , I was directed to attend a weekly group meeting to prepare for the intensive three stage eating disorder program. This meant I needed to  either  commute 4 hours by public transit or have my father drive me part way.  It was recommended that I relocate to the city so I could 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 – to living with 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, having to be supported by disability payments. 

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 so I would have a place to live during the intensive day treatment portion. This was 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 4 beds.  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. Like me, many people with eating disorders struggle  with other mental health conditions, (e.g.: anxiety, depression, OCD, etc…). If programs focus solely on eating disorder treatment and fail to properly support the person as a whole, 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 extremely frustrated with the very limited options there are 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.

There is not enough help within 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 in Canada.  This is a growing problem that must cost the government a fortune with the revolving door of emergency visits, disability payments and no end in sight!  

There are so many Canadians who have so much to give the world but are being held captive by the most powerful of forces, their own brains.

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.