The stigma that will not go away

I have written and blogged about this subject before.  In some ways it is the third rail of eating disorder treatment: touch it at your peril!  But touch it we must, as it rears its head again and again, enabling the eating disorder to confound attempts at real treatment and pitting one parent against the team or one parent against an other.  This hydra-headed monster is none other than the “also affected parent”.

It is quite common to uncover an eating disorder in first degree relatives of our patients. And why should this be a surprise?  Anorexia nervosa is highly heritable, after all.  That means it runs in families — just like autoimmune illnesses, diabetes, high blood pressure and many other things.  And because it runs in families it’s not uncommon to find one or more parents who are also affected.  Because the incidence of anorexia nervosa is ten times as common in females as in males, most cases (but not all) are found in the mother.  And while their illness may not be active (by report) it commonly gets activated as their child goes thorough treatment and talk turns to food, goal weights, “state not weight”, etc.

And it’s a nightmare. Here’s a representative (albeit entirely fictional) sampling:

Doctor: “Anorexia nervosa is a highly heritable brain disorder.  Your child’s illness is NOT YOUR FAULT.”
Parent: “Then why is everyone blaming me?”
Doctor: “What do you mean?  Who’s blaming you?”
Parent: “Well…the team.  They say my daughter inherited it from my side of the family, my grandmother had it too.”
Doctor: “Ok.  So she also inherited your beautiful skin and brown eyes….. inheritance is not about fault.  Really.”
Parent: “I never wanted anyone to know that I had it in college and I don’t want them to know it now. They’ll think I’m weak and vain and neurotic.”
Doctor: “Is it alright for people to know about your daughter’s illness?”
Parent: “Yes. No…. I mean, I guess so.  It’s not her fault she has it.”
Doctor: “So why is it yours?”

or

Doctor: “Mrs X, your daughter Samantha has told the therapists that the fact that you don’t eat breakfast and just drink coffee and skim milk is very triggering for her.”
Parent: “That’s all I’ve ever had for breakfast.”
Doctor: “Yes, but now we are trying to model ordered eating for your daughter.  She looks to you to show her the way.  We need you to eat a balanced meal plan breakfast as well.  Not just watch her eat.”
Parent: “But I can’t!  I can’t!” (voice rising) “I don’t like the taste!  My cholesterol will go up…. My irritable bowel will act up… you don’t understand.”
Doctor: ”I’ll try and understand.  But I need you to eat.

And worse:

Patient: “Dr O’Toole, my mom told me you guys are just making me fat.  She said she never weighed over a hundred pounds until she had babies”  or (tearfully) “my mom says I’m built like my dad’s side of the family, not petite like her” or  “my mom says when I get out of treatment she’ll let me lose five pounds because she doesn’t agree with you guys about healthy weight” or “my mom didn’t have a period until she was seventeen, so that’s normal for us.”

Perhaps worst of all:  

Parent: “Doctor, that damned wife (ex-wife/husband) of mine had anorexia nervosa with purging all of our married life together and it made us miserable. Now she’s given it to my daughter.”
Doctor: “She didn’t give it to your daughter, Bob.  They are both just victims of the illness.”
Parent: “Yeah yeah, I know.  But have you seen her?  She’s lost fifteen pounds since Suzie went into treatment.  It’s like she’s competing with her.”
Doctor: “We need to get Suzie’s Mom to agree to get help for her own eating disorder.”

later:

Doctor: “Marilyn, I am concerned about you.  Since Suzie went into treatment here the team has noticed that you have lost a lot of weight and don’t seem to be able to eat on the meal plan.”
Parent: “I eat, doctor, I do.”
Doctor: “But then how can we explain the weight loss?”
Parent: “It’s stress.”
Doctor: “But Marilyn, when I first met you, you told me that you have a history of anorexia nervosa.  If you don’t get your own illness under control, Suzie is unlikely to get well.  Her eating disorder will use your illness as an excuse to refuse to comply with treatment.”
Parent: “I am in treatment. I see my doctor every month…. or two.”
Doctor: “And she does….?”
Parent: “She prescribes the medication I need for sleep and anxiety.  My eating disorder is about anxiety and, believe me, it’s much worse since everyone has started blaming me for my daughter’s illness.  How dare they?”
Doctor: “How long have you been in treatment with this doctor, Marilyn?”
Parent: “Five years.”
Doctor: “But you continue to lose weight.”
Parent: “My doctor says anorexia nervosa is not all about weight. Why is everyone blaming me?”

Aaargh!  How can we help?  How can we identify and help treat multi-generational anorexia nervosa with compassion, understanding and success? We need to open this conversation to the readership here and ask for experience and suggestions, as no one, to my knowledge, has been able to get this one just right. And the suffering is immense.