This post was originally published on December 16, 2015.
Possibly nothing has changed so much over the last ten years as the acceptance of parents’ role in the treatment of children and adolescents with eating disorders.
When I founded Kartini Clinic in 1998, “dysfunctional” parents were widely considered to cause eating disorders in general and anorexia nervosa in particular. Toxic and enmeshed mothers were commonly cited by therapists, doctors and lay people as the common denominator in these illnesses. In fact, eating disorders were not even considered illnesses as such, but more lifestyle choices, protests against puberty, against the suppression of women and girls-- anything but brain based conditions. Many referring physicians, even pediatricians, would comment as they sent me their patient: “it’s no wonder she has anorexia, you should get a load of her mother.”
I’m proud of the fact that Kartini Clinic never accepted the “anorexogenic parent” as an explanation for these illnesses, and we created a family-based approach to treatment from the get-go. Today most everyone seems to have forgotten what it was like to be attacked by “the professionals” for the heresy of declaring that parents don’t cause eating disorders. Because of our belief that such an explanation (parental causation) made no biological sense, we were not surprised when “family based treatment” became popularized as the standard of care.
As a vocal booster of parental inclusion in all aspects of treatment I was, however, surprised when I began to receive reports from parents who told me they had been taken to task by other parents for seeking professional help when they “should be” re-feeding their child on their own.
One thing I have learned from experience is that there are many roles for parents in the healing of sick children, not just one role. And I have come to see that the single greatest disability a child could ever have is to grow up either without a parent or with one(s) who is/are not able to put the needs of their children first.
Parents are not saints. Mine weren’t. I’m not. And I’ll bet you aren’t either. Basically, parents are humans who have reproduced, which means that they have all the warts and bumps of people everywhere, with one distinguishing difference: the overwhelming majority of parents are their child’s biggest booster, most devoted fan club and deepest source of love and support. But parents can tire, get ill themselves, lose heart, get impatient, run out of steam and even die. To talk as if all parents are any one thing is to do a disservice to them. Some parents have a much harder row to hoe than others. Some are more fortunate, some are less so. Some have more severely ill children than others do. Outcome is not simply determined by parental virtue or hard work. For example, one of the implications of anorexia nervosa being a brain disorder is that outcome will be partially determined by a child’s own biology, the severity of their illness, the promptness of treatment and weight restoration, and the whole psychological and social environment within which they find themselves.
To illustrate the diversity of challenges some families face, I am going to outline a few.
Please remember that we have treated over 3000 children at Kartini Clinic, so if you think you recognize yourself in any of these vignettes, you are probably wrong. These vignettes do not include parents who have successfully re-fed their child at home and whose child is in good remission, because such parents would not be referred to us in the first place. Here are a few examples of those challenges:
A 15 year old girl who has had a bingeing and purging eating disorder for three years, without treatment. Her father is a lawyer, her mother stays home. They have three other children, one of whom has a severe disability requiring tube feeding and many doctors appointments, so plenty of family stress and time constraints on both parents. They live near Kartini Clinic.
A 14 year old boy whose parents are divorced, who has restricting anorexia nervosa with a severe compulsive exercise component and is terribly malnourished. Both parents work full time, father lives in another state and custody is in flux. Because the legal issues are unresolved (it has been two years) Mom has not received any child support. She earns barely enough for their needs at her new job where she believes she has no family leave time -- and certainly no paid family leave. She is convinced she cannot re-feed her son at home, as he defies her in almost all ways, and she needs to be at work. She lives an hour and a half from Kartini Clinic.
A 16 year old girl from overseas with partially treated anorexia nervosa, whose parents tried Maudsley re-feeding with success when she was first diagnosed at age 13, but have not been able to get her to a weight where she can menstruate, and she has become more resistant and harder for them to manage. There is one Maudsley-style therapist in their region but she has “given up” on their daughter. They have two other children in school and some help from grandparents in their home country, but have flown 10 hours to get to us. Needless to say their health insurance is not valid in the US.
A 15 year old girl with severe bulimia nervosa and diabetes whose father died this year, whose mother has been in and out of rehab and whose grandparents live in another state.
A ten year old boy with two parents, both professors, who live three hours away and have two other children. They tried home re-feeding, but felt that “it was ruining their relationship with their son” as well as “severely straining their marriage” and “ruining the lives of their other children.”
An 8 year old boy with food phobia from across the country whose parents mortgaged their house to get treatment in Portland because all attempts (four or five in their home state) to get their child to eat again had failed. Mom brought their son to Portland alone as Dad needed to keep working in the family business to maintain their health insurance and care for his elderly parents, who live with them.
An 11 year old girl whose mother, a nurse, took leave of absence from work to re-feed their daughter at home (despite father’s misgivings). Father is a physician, they have no other children and live in Portland. Despite everything Mom could do, their daughter gained, and then lost, weight in cycles they could not seem to control. Mom sought the support of other parents who had been successful with home re-feeding, but is now feeling a failure and wants us to help her figure out how to go forward.
Twin 13 year old girls of undocumented parents from Mexico with severe weight loss of unknown origin. The girls (born here) speak English, but their parents do not. Maternal grandmother and two maternal aunts have anorexia nervosa, from which one of them died.
Hats off to those parents who have done it themselves! But for those who need help (and those who don’t) let’s remember: the variety of human experience is very large, and those who have not been able to do home re-feeding can still be involved in a meaningful way in their child’s care -- and should be. No parent should be made to feel like a failure if home re-feeding either did not work for them, or they felt it was never an option in the first place. The task will be to find a way for parents to be treated as critical team members while navigating their other challenges; after all, without their parents’ help and support, a child is unlikely to get well over the long term regardless of treatment. In the end, children need to be able to return home, to learn to eat, love and live again within their own families and their own communities.
There is just more than one road that can lead us there.