EATING DISORDERS ARE FAMILY DISORDERS
Eating disorders are family disorders. Keynote speaker at this year’s National Eating Disorders Association Conference, Dr Thomas Insel, spoke from the heart.
The Federal government shutdown meant he could not speak as director of the National Institute of Mental Health (NIMH) so Dr Insel, the 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. 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.
‘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.
“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).
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.’
‘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 recognize the disorder at a much earlier stage. We have learned that behavior is the last thing to change when the illness develops. The brain is wired in ways to compensate for amazing changes, 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.
“We need to be humble,” Dr. Insel said.
He acknowledged that families and support organizations 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.
PRESIDENT KENNEDY - MESSAGE HALF A CENTURY AGO
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 ok because we CAN make a difference, by working in communities, and supporting others.
* Read more at the American Presidency Project: John F. Kennedy: Special Message to the Congress on Mental Illness and Mental Retardation.