I just returned from Tampa, Florida and the 2014 IAEDP conference of professionals involved in the treatment of eating disorders. I was there to talk about the very young child with anorexia nervosa, and I was slated to talk for three hours. And talk I did. For three hours! That’s an unusually long presentation time, but I was surprised that the audience and I found plenty to say on the subject.
At the beginning of my presentation I asked everyone to briefly state who they were and what their interest was. There were a large number of dietitians, who were very interested and with whom the difficulty of finding physicians who understand children with AN resonated prominently.
Many of these dietitians had been asked to follow a very young child who had been overweight before they got their eating disorder and whose doctor had told them how “great” it was that they were losing weight. Doctors who unthinkingly congratulated them on fat restricting and exercising. Grrrrr.
Of course, given the reported rising incidence of obesity in the US, it seems likely that this will become an ever more common experience, all the more reason I’ve tried to reach out to my fellow pediatricians, family doctors and nurse practitioners in various forums. There were two or three physicians in the audience who were also there to learn about very young children with eating disorders and who asked many good questions. There were also a lot of therapists. It was great.
And then there was Carolyn. As many of you no doubt already know Carolyn Costin is a well-known therapist, writer and founder of the Monte Nido group of treatment centers. Her approach to eating disorders differs in many ways from Kartini Clinic’s, and yet also similar in many others. Certainly her passion and dedication rings a bell with my staff. She walked in half-way through the discussion, but brought something to the table every science-oriented doctor, like me, should be grateful for: a different point of view.
Speaking for the many providers who themselves had/have anorexia nervosa, she spoke about how the new paradigm to which I, among others, subscribe (“anorexia nervosa is a highly heritable brain disorder, parents don’t cause it and children don’t choose to have it”) can be liberating yet confusing, empowering yet discouraging. Food for thought. How we talk about it to patients and their parents matters greatly to what they hear us say.
Leaving the discussion of “brain disorder” to another blog, let’s talk about what it means to say that anorexia is highly heritable, with a heritability thought to lie somewhere between 50-80%. (See Google results for Cynthia Bulik anorexia genetics for more information).
Thinking about this reminds me of a book by molecular anthropologist Jonathan Marks called “What It Means to be 98% Chimpanzee”, where he discusses (in 302 pages!) what it means to say that 98% of our genes are the same as a chimp’s. It emphatically does not mean that we are more chimp than human.
So what does it mean to say that the heritability for AN is around 70 %? It does not mean that you have a 70% chance of passing it on if you have it. But it does mean is that, roughly, 70% of what you see (the phenotype) is attributable to the genotype (your genes). And the rest is attributable to environmental effects. Substitute 50%, 55% 80%, 73.5674% or any other number, and you get the same idea.
To say that something has a large genetic basis does not mean that if you carry this gene you will inevitably express it. It also tells us nothing about which environmental factors cause us to express it. It certainly does not mean that you only have a 30% chance of getting well.
But that is not what I wanted to write about, nor what Carolyn challenged me to think about. No, the challenge was to be aware of how this information, which should be absolutely liberating and empowering for those caught in the grips of the illness, can be interpreted as disempowering and discouraging.
In discussing the genetic backbone of this illness it is important that we allow the patient to express how this information makes them feel. It is important to hear their story about their journey and lead them beyond the empowering belief that they are not to blame, to the belief that they can heal. To do this, we need to throw the doors of the discussion wide open. We need to face the curious unintended consequence of “you didn’t choose it”, which is their fear that if they didn’t “choose it”, then they can’t “un-choose it.” And while that’s probably correct, it is important to discuss how healing can take place despite this.
Present the facts, acknowledge the science, and then help open the discussion to how the individual hears you speak.
What we say matters, it matters a lot.