Eating disorders are family disorders

NIMH director speaks from the heart ‘Lessons that I wish I had known before’

Eating disorders are family disorders

Eating disorders are family disorders

Keynote speaker at the 2013 National Eating Disorder Association conference, Dr Thomas Insel, was speaking from the heart when he said, “Eating disorders are family disorders.”* His words remain vital today.

When a Federal government shutdown meant Dr Insel could not address the NEDA audience as director of the National Institute of Mental Health (NIMH, 2002-2015), this father of two children born in the late 1970s spoke as a parent.
“We had a boy and a girl, like a salt and pepper set,” Dr Insel said. One – a boy – was incredibly difficult, requiring constant attention, special schools, medications, lots of counseling and even with all of that, had tumultuous teenage years.  The other – a girl – was incredibly easy. A happy, imaginative, playful child who made friends but could play by herself, gave piano recitals at age five, and while a bit cautious and shy, pushed herself to succeed in school and theatre and art. One child was impulsive and oddly brimming with self-confidence while the other was high achieving and oddly lacking in self-confidence.
Despite his studies in the field of genetics, Dr Insel said it was challenging to find the right sets of rules for kids so different.
Both kids turned out to be spectacular adults but Dr Insel said:
“My greatest regret in life is that we did not know at the start that it would all turn out all right.
“I tell you this because our daughter, Lara, became very ill in her senior year of high school. Her hair fell out and she had dizzy spells. We talked about nutrition and body image and talked about college, and planned a trip to Italy during the upcoming spring break. The three of us travelled to Italy together, our son staying behind to do his own thing. I remember this vacation with great fondness but Lara remembers it as living hell. She was consumed with thoughts of what she could eat or not eat and her focus was limited to a set of obsessions.”

“Clueless” as a parent

Dr Insel said it was amazing how “clueless” he was as a parent.
“Lara was moody; she was 17, and away from her friends, not giving a lot of information. It’s not as if I was an ignorant observer – a psychiatrist who treated a lot of people with eating disorders – and yet, like cobblers’ kids have no shoes, I somehow missed all the clues.
“Denial, secrecy, family cohesion. All these things had us thinking about college choices, about the future, and absolutely missing what was going on in the present with our beautiful daughter. She was slipping into Anorexia Nervosa, and we were mostly ‘out to lunch’.
“Lara slipped slowly into this path of addiction* but today, 16 years later, 17-year-olds don’t slip into anything – they are turbocharged by the Internet. What was 18 months, in the 1990s, can occur now in a few weeks.”
Despite misgivings, Dr Insel said his daughter went off to college.
“She came home for Thanksgiving and told us she needed help. I was a professor of psychiatry but knew no-one to turn to. A private program had availability and great group of young clinicians, but best of all for us was the fact that our very ill daughter said, ‘I want to do this’ and she sought the program, made the appointments, and was willing to take time off school to get therapy.  “Within a term, she had broken the spell (of the eating disorder). She built up confidence and used the illness as a teachable 18 months about who she could be – and proceeded to turn into a spectacular adult.”

Different outcomes

A cousin fell ill in about the same way but had a different outcome – outpatient and inpatient treatment was not helpful and insurance ran out – savings ran out – and the family became a victim of illness in many ways, including divorce, debt and depression. The cousin became better eventually but the costs, Dr Insel said, were profound.
‘It’s been said that every suicide has 11 victims, the person who dies and 10 others who will never be the same.  Anorexia wreaks the same costs – in an odd way the soil for anorexia – low self-esteem, perfectionism, obsessiveness – grows an awful tree of chaos, guilt, and helplessness.’
“With an eating disorder, you start with low self-esteem and develop blame, shame, low self-esteem, and chaos,” Dr Insel said.
“Why did Lara have a different outcome compared with her cousin? I would like to say the reason was because she had great parents, but the cousin had great parents too. I think it had something to do with insight, and our daughter did all that she could with this. Her cousin’s illness was more like a cancer that had already metastasized so widely that her illness in many ways became her identity, and this was why it took years to get her life back on path.”

“Lessons that I wish I had known before”

Dr Insel listed four lessons:
Language matters. We use labels as if giving them a name explains what we are naming. It is good to have a common language but we have to be clear what these names mean. We need to specify and clarify. We need to be mindful that the labels may hide huge differences and prevent us from finding the right treatments. Perhaps the presence of insight may be more important than weight or family history.
Eating disorders are like a cancer in that they grow insidiously and slowly. We know they grow from temperament – an easy kid, perfectionist, self disciplined, modest – wonderful traits to have but also grounds for developing these disorders. What we see often is that it is helpful to understand and recognise the disorder at a much earlier stage. We have learnt that behavior is the last thing to change when the illness develops. The brain is wired in ways to compensate for amazing changes, e.g. the loss of cells; it is an amazing computer – and this also presents an opportunity to identify the illness early, before behaviors start to appear – this is true now in heart disease, diabetes – so that we are aiming for pre-emption rather than prevention. This can make a huge difference (in the prognosis).
Eating disorders are family disorders. They are not necessarily a family system problem but the family provides the context in which the eating disorder develops and exists, and this is the context in which the illness will ultimately be resolved. The culture counts too, and family is the prime culture. We need to focus on learning to express emotion, to ‘out’ any secrecy. It is tough going. Family-focused treatment in recent years, with Maudsley, and Lock and Le Grange and others has a clear track ride. This treatment may not be the right answer for everyone but for everyone, unless family is involved in some way, there will still be problems that won’t be resolved in that family culture.
Most people with an eating disorder are great. There are scars and fatalities. The story, however, is mostly a hopeful story. Most people who develop such an illness go on to do spectacular things as adults, using the very traits that may have taken them into the addiction of an eating disorder. We like to assume we know how people get sick or better but with this problem there is no single path either way.
In some cases, one person has assisted recovery and also the tincture of time has helped.

And furthermore

“We need to be humble,” Dr Insel said. “We know little about eating disorders. The problems are global. In China, Anorexia Nervosa is a major concern. abreast of other mental illnesses.  Consumerism is now rife in Beijing and Shanghai. Shops are full of high-end luxury goods. Some streets are like an airport walk. Thirteen-year-old girls in Shanghai are feeling the same pressure as experienced by young people in many parts of the USA.”
The problem of eating disorders, Dr Insel said, was more common everywhere.
He acknowledged that families and support organisations were passionate about advocacy for getting access to insurance coverage and quality care. This was all-important, but Dr Insel said:
“We have to be humble because we also need better science, more information and understanding. For instance with diabetes, and cystic fibrosis, the focus is where they already know a lot: they are deeply and continually focused on science.
“This provides an important lesson – we need to be thinking how to advocate for better treatments that will be cures rather than slow, rehabilitative interventions.
“We want advocates who don’t just talk but actually do it—posting clinical trials and collecting registries. An example is the NEDA Hope Fund.
“This is a lesson from support organisations and families with children who have diabetes and cystic fibrosis.
“You CAN make a difference.”

We need to address biological illnesses

President John Kennedy, 50 years ago, stated:

Yet mental illness and mental retardation are among our most critical health problems. They occur more frequently, affect more people, require more prolonged treatment, cause more suffering by the families of the afflicted, waste more of our human resources, and constitute more financial drain upon both the public treasury and the personal finances of the individual families than any other single condition.**

“President Kennedy focused the country for first time on these issues,” Dr Insel said.
“That was 1963.
“How do we make sure that 15 or 16 years from now, we are not having same conversation?
“It is great to be aware and measuring things, but we cannot accept a 67 per cent increase in prevalence of these diseases.
“We need to be mindful, and identify much early through biomarkers, screenings, or whatever, we need to focus on family and culture, and define the paths to recovery.
“Most of all, we need to build a community of addressing these biological illnesses.
“I am hopeful, because I have seen what happens in other areas of illnesses, serious disorders. At the end of the day it is up to each of us and this is okay because we CAN make a difference, by working in communities, and supporting others.
“As a proud parent, thank you for your commitment and to be open about your own personal issues about failures as well as successes.”

* During question time, Dr Insel expanded on his use of the term ‘addiction’. He described an addiction as a very narrow focus on a single target. He said that whether the addiction was cocaine, or thinness, it had that quality of being self-reinforced and defining. Mostly, addictions pertained to substance abuse, but in Anorexia Nervosa and maybe Bulimia Nervosa, Dr Insel said addictive behaviour took over in much the same way. “I don’t know that we fully understand the biology but it is a helpful conceptualisation,” Dr Insel said.

* This post first appeared on October 29, 2013.
** Read more at the American Presidency Project: John F. Kennedy: Special Message to the Congress on Mental Illness and Mental Retardation.

June Alexander

About June Alexander

All articles by June Alexander

As founder of Life Stories Diary my prime motivation is to connect with people who want to share their story. Why? Because your story is important. My goal with this blog is to provide a platform for you to share your story with others. Building on the accomplishments of The Diary Healer the Life Stories Diary blog will continue to be a voice for people who have experienced an eating disorder, trauma or other mental health challenge, and provide inspiration through the narrative, to live a full and meaningful life.

My nine books about eating disorders focus on learning through story-sharing. Prior to writing books, which include my memoir, I had a long career in print journalism. In 2017, I graduated as a Doctor of Philosophy (Creative Writing), researching the usefulness of journaling and writing when recovering from an eating disorder or other traumatic experience.
Today I combine my writing expertise with life experience to help others self-heal. Clients receive mentoring in narrative techniques and guidance in memoir-writing. I also share my editing expertise with people who are writing their story and wish to prepare it to publication standard. I encourage everyone to write their story. Your story counts!
Contact me: Email and on Facebook and LinkedIn.

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