What does it mean to say a family member of a patient with anorexia nervosa is “affected” or “partially affected” with an eating disorder?
The last ten years have brought us a lot of new information about eating disorders in general and anorexia nervosa in particular. One such bit of new information is the evidence of heritability of anorexia nervosa. In a study published in the Archives of General Psychiatry Dr Cynthia Bulik, a well known researcher from the University of North Carolina, put it this way: “The heritability finding places anorexia well within the more heritable psychiatric disorders.”
After years of taking family histories at Kartini Clinic, it is equally clear to us that anorexia runs in families, but that not every affected family member will have the exact same eating disorder their relative does. If you have a first degree relative (mother, father, sister, brother, child) with anorexia, your risk of your acquiring anorexia is ten times great than someone who does not have such a relative. If the first degree relative with anorexia is a male, risk to his relatives is even higher (se Bulik et al; Devlin B et al.).
These being the facts, it should surprise no one that, in the course of treating a child with anorexia, another family member (often a parent) is also found to have an eating disorder. In the vocabulary of genetics, this is called being “affected.” There are also cases of eating disorders that do not meet full diagnostic criteria (“sub-threshold cases”). When we encounter sub-threshold cases we say the person is “partially affected.” There is absolutely no judgment involved here — no one can help what they do or do not inherit genetically.
So, back to our opening question,: what does it mean to say a family member is affected or partially affected? It means someone else in the family has inherited the same illness. They did not choose it, they inherited it.
If another child in the same family is thought by the treatment team to have an eating disorder the next steps are fairly straightforward: if the diagnosis is confirmed, that child also gets evaluated and treated. But what if the other affected family member is a parent?
It has been our many years’ experience that if a parent is active in their own eating disorder while their child is in treatment, the child will not get well. And since the entire reason parents bring their child to us for treatment is so their child can get well, this is clearly a fundamental problem.
The problem is made even more difficult because we are talking about a brain disorder. And one feature of this particular brain disorder (and others) is something called anosognosia.
Anosognosia is a fancy term for a feature of anorexia and related eating disorders (as well as of some types of stroke and brain trauma) that describes a change to how our brains process information. In brain conditions with anosognosia, the person’s perception of their own illness is affected. In fact, anosognosia often declares the illness to be gone or to have never been present. In anosognosia the brain does not perceive the extent of the illness, sometimes not even its presence.
The presence of anosognosia means an affected parent may not be able to recognize they are ill or that it matters. This may lead them to refuse treatment — not because they are stubborn, but because they are unable to perceive their own illness as a problem. In the case of an affected child, this attitude can be overridden by parental pressure. If adults in a family feel that their child’s illness is a problem, the child will have to submit to treatment. But if the affected family member is an adult, who can make them accept treatment?
The answer has to be “the family.” Rarely have we found it sufficient to draw attention to an affected parent and simply to ask them to seek help. In fact, in some ways, addressing the issue of an affected parent is the “third rail” of eating disorder treatment: touch at your own risk – you may get electrocuted. As a provider you really have to care a great deal about the family (and the child) in order to take that risk.
Now, how does one convey caring, compassion and non-judgmentalism when drawing attention to an illness which a parent may perceive to be a personal “failing”, “shortcoming” or “flaw”? How can we preserve a parent’s personal dignity and parental authority while still requesting they seek help? Not in front of their child, for sure, but of necessity in front of their spouse, significant other, and/or participating family member, all of whom will need to support the person’s efforts to get treatment. Open, compassionate discussion among adults in the family will be essential. An affected parent may either procrastinate getting help, refuse help or say they are “seeing a counselor occasionally” (remember anosognosia!). Even when their child’s treatment aggravates their own illness, to the extent they are unable to follow the family meal plan (a key component of treatment at Kartini Clinic), they may still refuse help for themselves. They may even get angry at their child’s team of providers. In cases where a parent responsible for food at home refuses treatment for an active eating disorder (or one that clouds their judgment about issues such as weight and meals) the child’s own treatment may need to be halted until such time as the parent can be made to understand that unless they get help for their own condition, their child will not get well.
This is hard stuff, but it’s essential to get right.