My good friend and colleague Therese Waterhous, a PhD, RD eating disorder specialist and board member of the parent organization F.E.A.S.T., called me the other day. She needed to vent, and now, apparently, I do too.
It’s not that her annoying experience was rare or new, it’s just the fact that such ignorance persists and that at this point — given the avalanche of new information about pediatric eating disorders — such ignorance seems willful. You can update your database. I have to do it myself all the time.
Therese is particularly annoyed when dieticians give outdated advice to parents about eating disorders; I hate it when doctors do it, and we both gnash our teeth when therapists do it. Sometimes we have to ask ourselves: what is the point in continuing to challenge the old paradigms, when our years of challenge still seem to fall on deaf ears?
Example: I met a new patient, last week, about 18 years old, who had been seen for her bingeing eating disorder. The bingeing was destroying her life, her sense of self, her ability to maintain relationships. Notice I don’t say it was destroying her weight (although it can); her weight was still normal because she was engaging in other eating disordered behaviors designed to suppress the effect of increased caloric intake. In other words, she might have been better off if all the bingeing did was make her fat. As it was, although of normal weight, she was battling several ED demons at a time in order to not gain weight. Now, who would chose this condition? It absolutely sucks.
In desperation for help, this patient turned to a therapist who works within an organization for size acceptance and self nourishment which I admire. But this therapist reportedly told her “you will never be able to get over your eating disorder until you change your relationship to your mother.”
Therese told me about another, younger patient with anorexia nervosa whom she had counseled who had achieved beautiful remission from her anorexia nervosa, was weight restored and back to happy social functioning, but who was then told by her therapist, “now you need to take the last step and get away from your parents, especially your mother. Until you reject her enmeshment with you, you will never be truly healed.”
How did this pervasive parent bashing/mistrust enter our professional lexicon? Uprooting it is like trying to get invasive blackberry vines out of the forest: pull it up by the roots, go ahead, try. It is amazingly persistent.
Therese pulls her hair out when she reviews the work of other dieticians who counsel patients (still) to limit their fat intake or who set impossibly low goal weights based on simplistic insurance equations. Once, those equations were all we had, but that was a long time ago though, folks, and the field had advanced.
The venting Therese needed to do with me that day, however, involved a doctor. A pediatrician, no less.
My goodness, you’d think that my partner and I (and others) had not spent the last ten or fifteen years giving talk after talk to our colleagues about pediatric anorexia nervosa and other eating disorders. Not being able to convince doctors that treating patients inadequately is not in the best interest of good outcome, I have begun to tell them to consider the effects of malpractice on their own future. Deaf ears.
The patient whom Therese evaluated that day was a lovely girl of about 16, talented, intelligent and the daughter of concerned parents. They had brought their daughter to a pediatrician they trusted because they were concerned about her gradual and continual weight loss; her over-enthusiastic involvement in her sport despite being cold all the time; her purple hands and feet; and her dizzy spells. They knew she still ate (or thought she did), but clearly not enough to match her output. And she had begun to restrict whole categories of food (gluten, dairy, most carbs, fats) on the basis of “intolerance” and “upset stomach”. The pediatrician told them not to “over-react”. Yes, they were told, her heart rate was very low (below 50), but that was because she was “a trained athlete”. She was “still on the growth curve”, so the weight loss was “not that bad” (this is the point where my blood pressure shoots up). She should “eat a little bit more”, maybe “add a protein drink” (fat phobia is ubiquitous among pediatricians who don’t update their database) and they – parents – should back off and take her to see a dietician. This they did. They fortunately took her to see Therese. But Therese’s work was cut out for her, because the doctor had carefully laid the groundwork for Therese to look like a self-serving alarmist if she suggested that the girl not be allowed to continue her sport, gain back all — repeat all — of the weight she had lost, and add some F*A*T to her diet, immediately. Therese set a written timetable for weight gain, which, if not accomplished, would need to result in a higher level of care/intervention. And then she called me, to share in the frustration.
Unfortunately, conversations like this are a weekly occurrence for my partner, Dr Moshtael, and me, despite our lectures, our writing, blogging, phone chats, giving out the F.E.A.S.T./A.E.D. sponsored handouts about medical care, and numerous Kartini films addressing these very issues (for example here and here).
The only thing that has seemed to make a small dent is the fact that all pediatric residents from Oregon Health and Sciences University’s medical school have rotated through Kartini Clinic since 1998. Thanks to the teaching given to them by our parents, patients and by us (our teaching motto: “your patients are your teachers”), these young doctors call us years later with informed questions about patients they suspect have eating disorders. Those patients are the lucky ones.
So what are we going to do about all this? What are we going to do?
I’m hopeful that one possible answer lies in the “empower the parents” approach we have taken and supported for years. It is the primary reason I keep blogging. I have been a patient too, as well as the wife of a seriously ill patient, and I know that you need to find a doctor you think stays up to date, and one who will work with you. And you need to be informed yourself. Nothing else seems to work. If you find yourself or your child in front of someone operating with a treatment paradigm from the 1970s (or 1870s), find someone else. Immediately.
And remember: ultimately, no matter who we are and where we land among providers, we ultimately vote with our feet.