insatiable desire for prediction and control

Parents are often chided and patted on the head for demanding answers and not taking "we don't know" for an answer.

So I guess the question is whether this is normal and indeed expected for a parent facing such a monstrous illness or whether we share some traits with our kids:
"insatiable desire for prediction and control with related intolerance for uncertainty"

I'll cop to some of that, but I still think it is natural faced with a real emergency and an unclear and underpowered clinical response. Here's an experiment I'd like to try: what if parents were immediately believed when they suspected an eating disorder, were referred to a range of choices for appropriate and effective care without delay, and there were alternatives if those interventions weren't sufficient. Then let's see how insatiable and intolerant we were. Then lets take some families with kids with eating disorders and swap out their kid's illness for, say, pinkeye or nits, and see if their response is just as extreme.

Sadly, neither of these hypotheticals are possible, but I don't know a parent facing an eating disorder that wouldn't be willing to give either of those a shot!

Comments

  1. I would like to read the whole article before making too much comment, but I do agree, there may well be a reason why parents, and indeed, sufferers, have a desire for control. Doesn't everyone when faced with a life-threatening situation?

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  2. Gosh I am so tired of being told what my d's personality traits are and what mine are too! Can't we just live, love, and eat! And isn't a bit controlling of the psychologists to want to put everyone in boxes of their own making in order to organize our collective psyches?

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  3. I read the entire text of this paper. It's not saying that parents of people with anorexia are inflexible and intolerant of uncertainty. It is claiming that it is individuals with AN, not necessarily their parents, who fit that description. The gist of the paper is that people with AN tend to be psychologically rigid and "driven to predict and control." Sweeping generalizations are made. People who suffer from the disease are pigeonholed and stereotyped. The authors make anorexia nervosa sound more like a choice than an illness when, for example, they write that sufferers seek to "reduce the threat of social rejection" by the "strategy" of "achieving a thin-ideal" which "functions in part" to "increase comfort in social situations by conforming to societal standards of attractiveness and the like."(pp.67-68)

    Meanwhile, the evidence offered is weak, to say the least. In fact, the best sentence in the whole paper is in the conclusion, where the authors acknowledge, as they must, that "The model and predictions outlined above are largely speculative."


    So, given the urgent need to find effective treatments for this terrible disease, why do we need another paper speculating about it? Why don't these researchers instead take their taxpayer dollars allocated for scientific reasearch and, instead of engaging in more unneeded conjecture, test their hypotheses by conducting randomized controlled trials of their "mindfulness" and "acceptance" treatments? To my mind, that would be more useful than what they have written.

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  4. I apologize. I didn't mean to imply that the article I was referring to was discussing parents, it was not.

    I was struck by the wording and the way that phrase takes what is clearly a real trait (or state) often seen in actively ill ED patients (especially AN-leaning) and gives it an ugly deliberate spin. The same traits could be described differently and with less condescension.

    It also struck me that this is a profile also observed in parents and it can be similarly interpreted. I believe we'd be better off assuming these states are temporary and natural to the situation - and spoken of with more compassion.

    There is no question in my mind that many parents of ED patients are extremely anxious and intense and "demanding." But I think it is important not to assume we know why.

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  5. I'll take nits, pinkeye... anyday over ED. I even wished my d had cancer instead of ED at one point. At least, we would have been provided with a team of experts providing evidenced-based care immediately. With ED, we squandered precious time trying to find treatment on our own and really, where's the team? It's been a team of one- me communicating with everyone else. I do have to say that regardless of what my kids have had I always wanted lots of information and yes, some degree of control, if possible- isn't that considered good parenting?

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  6. I feel a film coming on. Anyone want to contribute?

    C and M ED Productions love a challenge.

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  7. I haven't been able to download the whole paper, but perhaps I can explain, from a personal perspective as a former AN sufferer, what 'control' meant/means to me.

    The phrase in the Abstract to the paper "...insatiable desire for prediction and control with related intolerance for uncertainty.." says it all for me.

    I even wrote a paper, published in an ED journal describing how, for me, AN was about 'control'. But was I trying to control other people for some ego boost, or because they were 'over-controlling'? NO! Was I trying to control anxiety? YES!

    I was a very anxious child and had been like that from being a baby. I was hugely over-sensitive to noise and other sensory stimuli. I couldn't cope with change and unpredictability. These characteristics were/are constitutional. I had OCD/ASD rituals from being a very small child. I was bullied at school and this increased my anxiety. When I got to puberty my anxiety escalated. This was in part due to me feeling that my body was doing things beyond my control, but also because of continuing bullying and also sexual abuse by someone outside of my family. (My parents would have been horrified had they known about this, and would have taken action).

    So, all-in-all I was desperately anxious in the months leading up to the onset of my AN at age 11 yrs. I never had a wish to lose weight, but somehow I 'fell into' doing exercise rituals and counting calories. The rituals made me feel I had control in my life through predictability. Rituals and routines make life predictable.

    Once I had become absorbed in anorexic rituals and routines I couldn't get out of them - at least for many years. Whenever I tried to change the anxiety was so great.

    Therefore, the 'control' aspect of AN for me was very strong, but it was not, as some people think, about controlling other people, including parents. In fact, I was very upset that I was hurting my parents with my behaviours.

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  8. Cathy,

    What you are describing is such an eloquent and moving example of what I believe is going on for most if not all people with anorexia. The words they use, and the ideas around it about weight and appearance may differ (and be iatrogenic or dependent on the presence of dysmorphia), but I believe the mechanics of it are quite common.

    Our problem here is linguistic, I think. You are using both "about" and "control" in a specific (and I think accurate) way that is NOT meant by most people in the ED world when they say "about control."

    In popular usage, "about control" is meant to mean that the person has a horrid life and is consciously using food behaviors to exert some agency in their life. The implication is that this person is oppressed from the outside, and is really no different temperamentally or neurologically from other people. This use of "about control" is meant to be a conscious and manipulative response to the world. It also implies that the cure is to get the person free of this oppressive life and teach them that they can control other things instead of food, "use their voice," and get their families and society to stop oppressing them.

    That is why the phrase "about control" is a problem.

    The way you are using it, and Fiona, are different and to my mind, helpful. But when you use it you will be confused with the other meaning, I'm afraid.

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  9. Just reading the comment by the second 'anonymous' above who has read the whole paper:

    The statement taken from the paper:

    ...sufferers seek to "reduce the threat of social rejection" by the "strategy" of "achieving a thin-ideal" which "functions in part" to "increase comfort in social situations by conforming to societal standards of attractiveness and the like."(pp.67-68)

    ...is unfounded nonsense, at least as far as my own experience of AN. I cannot stand the concept of 'thin ideal'. It makes me feel like puking. AN, IMO, has nothing to do with desiring to emulate a 'thin ideal'.

    It is so annoying when people who don't have an ED put their own spin on the whole thing in accordance with what they assume that the person is thinking and feeling.

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  10. I left my second comment before reading your response Laura. I entirely, definitely, absolutely agree with you that people with EDs do not engage in the behaviours they engage in a conscious, wilful or manipulative manner. In fact, 'insatiable desire'... is in accurate. The real terms involve desperation and fear.

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  11. One good test on the language around this is to compare the language used now to describe OCD obsessive and compulsive symptoms. That is the direction that I'd like to see us go in EDs (I actually believe EDs will be understood to be related or even a subset of OCDs eventually).

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