my poor child

In response to yesterday's blog post, BBMI, I received the following from an anonymous reader:

"Laura, You really need to step back from this a little. I've never seen a parent more intent on making her poor child out to have a mental disease. It is not biologically plausible for 10-25% of young people (namely girls) in industrialized cultures to suddenly have brain disorders... that almost universally (but for very rare exceptions of psychiatric problems or cases among third world cultures exposed to industrialized weight ideals) appear after dieting and weight/body obsessions."

I know nothing about you, Anonymous, but I'm guessing that you are not a parent who has had to seek and pay for care for a loved one with an eating disorder. To have an illness that at very high rates kills or maims its victims, that distorts reality to the point of delusion, that rejects help and perceives the experience as a choice - treated by medical and psychiatric resources with 20 outpatient visits because it isn't a "real illness."

I'm guessing that you have not looked at a young loved one whose life is being destroyed and known that despite medical experts wanting to help - you can't pay the bill until the illness has put them near death or irretrievably ill.

You probably didn't spend your retirement fund, lose the equity on your home, lose your job, or make another sibling go without college tuition in order to save a life of a beloved child.

But you are right that most eating disorders are preceded by a diet.

Perhaps you don't understand that the brain is damaged by dieting. Perhaps you don't understand that dieting causes malnutrition that for certain people drives disordered thoughts and behaviors, destoys self-esteem, and distorts body image.

My "poor" child finds knowing her illness for what it is - a TREATABLE brain disorder - a freedom, not a restriction. She likes knowing that her recovery was acknowledged as truly heroic and HARD and not self-inflicted. She doesn't need your pity - and she doesn't have mine.

Lots of illnesses - ADHD, OCD, heart disease, schizophrenia, diabetes, asthma - have environmental triggers and respond to societal changes. ED clearly does, too. But no one objects to calling them biologically based illness. No one questions whether care should be covered.

Here's why I don't "step back," Anonymous. Because parents need to know the truth in order to get and pay for and support good care. We need to be fully engaged and not passive or guilt-ridden or blaming our kids.

This is the hardest work most of us will ever do. Knowing that this is a real brain disease helps. Insurance coverage helps.

(Anorexia, bulimia, and EDNOS do not strike 10-20% of the population - not even the youth population. I fear you are conflating - and this is common - the subclinical disturbances throughout society with frank mental illness. You may be adding in BED to get that figure.)

Comments

  1. You go, Laura. I'm not stepping back either!! Call me what you want - overinvolved, overprotective....- I will not let my child die of this horrible disease. I applaud you.

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  2. Okay, here's my take: do you know how relieving it was to be told I had a mental illness called anorexia? Not just that I was "anorexic". That was a bizarre adjective that belonged to skinny people (which I definitely didn't think I was).

    But to be told, over and over, that this illness was a real illness and that it wasn't my fault relieved so much guilt. Not all of it, but some. That I wasn't putting my friends and family through hell because I had "chosen" to starve and wasn't "choosing" to stop. I was in the hospital for depression (as well as an eating disorder) and my psychiatrist said: your brain is sick. And we will fix it.

    There ARE increases in disordered eating, and that is really freaking sad. Some of those disordered eaters will probably go on to develop full-blown anorexia and bulimia. Which is another reason we should work to prevent it. But that in no way means that anorexia and bulimia are NOT real illnesses.

    No parent--NONE--wants their child to have a brain disease, mental illness, whatever you want to call it. But parents and sufferers and clinicians DO need to be given a proper diagnosis and led towards treatment and cure, as well as insurance coverage for their care.

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  3. I think it's still so damn hard for many to come to terms with the word "mental illness" as well.

    Many remain uncomfortable, and sometimes for valid reasons, with the terminology, and this continues to stigmatize countless, which then keeps many away from finding or being able to obtain even the most rudimentary and adequate treatment, (and not to mention keeping insurance quite content not to have to cover services!), along with finding the qualified clinician(s) to best assist in this type of care.

    There also seems to be at times, quite a bit of resentment towards those suffering with ED's as well as continued negative ambiguity towards parents and families, which honestly, continues to baffle me as why this is acceptable practice. So caring, intelligent, compassionate voices such as yours, Laura have and do make a difference! **

    Now that awareness, advocacy and more accurate research is contradicting what has kept many silenced, underdiagnosed, and untreated for far too long, there is a slow ripple affect taking place. And we just have to keep up the momentum, spirit, and encouragement going not get too bogged down by the negative, overly disaffected or detatched that does still circle so many areas of this illness.

    There are so many ways to have a discussion and debate an issue, I just don't see the relevance in making commentary so personally negative, especially for all the effort you have brought forth to raise awareness and work as passionatley hard as you have as both a parent, loving mother and ED advocate, Laura.

    On the contrary, I think your daughter and family are quite "rich"!

    -XO

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  4. The only thing I take issue with in your response is your addendum at the end about BED--it appears that you're separating BED as less of an illness than the previous 3 you mentioned. I don't know (and in fact doubt) that that's your intent but I worry that it may be construed that way.

    I sometimes think you come on strong and sometimes think you are overly dismissive of emotional/social components to EDs--though I DO NOT DO NOT DO NOT think that ANYONE should be blamed or that anyone is blameWORTHY...and I think that including parents as agents of help rather than excluding them as damaging is an incredibly important step. I agree that nutritional rehab should be a first line step in EDs because frankly it's just common sense. (Even someone without an ED is less capable of making good decisions and coping with life after skipping a meal or two...ever met a cranky hungry toddler?) I strongly believe--because research bears it out--that there are underlying biological vulnerabilities to EDs and that the ED itself is self-perpetuating once the ball is rolling and that "choice" is a ridiculous concept. I think that given those facts, it makes little sense to me that families with ED children are any more dysfunctional than those where kids do not--the kids in those families are just more vulnerable to any stressors that arise, familial (I'm NOT saying bad parenting--not that parents of ED kids are more likely to be good parents than those w/o either...) or otherwise.

    I do, however, think that triggering stressors are not necessarily only the behaviors themselves nor solely biological; social, emotional, etc. factors can stress the organism biologically as well, triggering ED behaviors...and these factors would (after refeeding, or at the very least during and after) need addressing to keep those w/ EDs to returning to what can be an anxiety & depression relieving/suppressing pattern. Sometimes I think that takes the backseat here, as though including non-bio components makes the illnesses less real. Whatever the cause, EDs aren't chosen and no one no one NO ONE should be blamed--not only b/c blame is BS but because it's completely unproductive.

    I think anything that gets those w/ EDs the treatment they need--whatever it is--and gets insurance to cover it, reduces stigma & blame and gets the truth out there is important.

    Hehe, I thought I was going to find a point of agreement with the letter, and the more I thought about it, the more I realize I have none. Really I have a nuanced difference of opinion as to emphasis in cause/treatment, but by and large I think your advocacy and views are incredibly important, so I'll stop babbling and taking over your blog and simply say, kudos & thank you.

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  5. We need to let go of our discomfort with the term "mental illness." I would be interested to see research done to understand why so many are dealing with anorexia today.
    All I can add is that your "poor" daughter is very lucky to have a mother like you who saw the illness for what it was and gave her the best medicine possible, food, and any help she needed to learn how to live with the risks she may continue to face. All this without making her feel that she did something wrong. : )
    And now the work you've done when you could have just as easily said goodbye....thank you for continuing the fight against anorexia for others. You ARE making a difference Laura.

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  6. I have a question. WHY do you think that mental illnesses bear a stigma that (quote) physical illness (or, rather, non-brain-related illnesses) don't? Is it because when one is "mentally ill" it potentially changes our very notion of that person's "personhood" and that is very scary for us to deal with emotionally and conceptually? As though we are denying the seriousness of mental illnesses because of our own personal fears about what it means to the integrity of our personhood? Am I making any sense? Or is it the old we must be able to keep control of ourselves, pull ourselves up and out of the muck and mire of life, the 'free will' vs. predetermination philosophy? We can't stand the thought that we could 'lose' our ability to direct our own lives? I'd like to understand more how the stigma of mental illnesses came to be.

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  7. Anne,

    Blame our good old dead French guy, Rene Descartes. Inventor of the Cartesian plane (in geometry), philosopher, a French Don Juan, and philosopher. The last is the important: he said "Cogito ergo sum." I think, therefore I am.

    Your mind is so often considered separate from your body. In part because of Descartes. Yet neurological illnesses aren't treated with the same stigma as mental illnesses, even though they all involve the brain.

    My guess? Between Descartes and Freud, and the simple fact that you can't see much wrong when you dissect the brain of someone with, say, bipolar disorder, but you can if they have a brain tumor, all adds to the mystery. And behavior wasn't viewed as biological. You were considered to be born with a blank slate, the "tabula rasa." One of Descartes contemporaries came up with that (can't remember who).

    Which is a really long answer to your question. Basically: a hell of a lot of history with precious few answers.

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  8. Haha, great analysis Carrie--proof that you've spent too much time in school. ;-) Descartes screwed it all up. So true.

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  9. Yeah, I'm sure I come off as a one-note Nancy here on this blog. But that's the point.

    There are plenty of messages out there - the overwhelming majority - about the environmental influences on eating disorders. Far, far out of proportion to their influence. And to date, there doesn't seem to be much that is effective in the way of prevention and changing environment.

    I only focus on parents taking charge, and on the biology, because that is what this blog is for - to beat back against the tide.

    I do have a rich life outside this blog, other interests... another name and career as a matter of fact. I even have other blogs!

    But this blog, and this work, is about empowering parents during a critical time in their lives - right after an eating disorder diagnosis. And for the growing number of parent activists trying to prevent the pain and mis-steps we made for the newer families.

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  10. You are a true fighter Laura. I thank the stars above that there are people like you out there educating, researching, and fighting for families. Keep fighting the good fight and please do not step back!

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  11. Amen! Thank you for sticking to your guns and for taking a stand in the first place.

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