Bad decisions?
This week is, apparently, a good week for infuriating emails and blog posts. I've written about the email that had me scratching my head (or, more accurately, banging it against my desk). Now it's time to write about the blog post that has me doing the same.
Today, I read the latest blog post from fellow Psychology Today blogger Emily Troscianko, aka The Hunger Artist, who is herself in recovery from anorexia. In the title of her post, she posed the following question: Is Anorexia a Disease, a Series of Bad Decisions, or Both?
Writes Toscianko:
A reader recently made a comment which prompted me to write this post. She said that 'anorexia, despite being a "disease", also involves a series of very bad decisions, for which we as the sufferers must bear some responsibility'. This made me reflect on my own experience, and the various 'points of no return' at which the development of full-blown anorexia became significantly more likely...At any of these moments - before leaving the house for school before the non-breakfast, when at the Swiss supermarket or in the kitchen on my boat in Oxford - I could have identified the danger in what I was contemplating doing, and decided otherwise. In the first of these three examples, I had the 'excuse' of really not knowing where this could lead, although I knew that lying to my family about how I was living couldn't be a good thing; but in the second two examples I knew perfectly well what the consequences would be, and went ahead regardless. Yes, numerous physiological, situational, and emotional factors were contributing in each instance to that decision - a decision is not a freely willed thought act detached from its embodied context - but I did nonetheless have the capacity to do otherwise. Whether that doing-otherwise would on its own have significantly slowed or even halted the progression of the anorexia is impossible now to say, but it's clear that all three decisions did have the opposite effect.
...Expressing personal responsibility through action against anorexia is an act of freedom and of self-understanding. The striking simplicity of what is at the heart of any such step towards rejecting anorexia - the simple act of eating - was what made slipping into illness so easy, and is now what makes climbing out of it a process that is constituted primarily of those trivial-seeming daily decisions. Sitting down now with the meal which you have planned to eat, and deciding to take the first bite, may not be an easy decision to make, but the effects both of doing so and of not doing so are very clear, and the moment at which the decision needs to be made - does this fork go into my mouth now, will I swallow now? - equally evident. All the things that have led you to be sitting here at this table contemplating this plate of food are complex and often opaque, but now that you are here, right now, you can make a good decision or a bad one, and however much an inner voice may whisper afterwards to confuse you, you know which is which.
Here's the thing: anorexia isn't a choice. It's not a decision. It's an illness. Which Troscianko admits. The problem is that these types of beliefs about anorexia and recovery--that the sufferer must actively choose and want recovery--don't always lead to the best outcomes.
For years, I felt like a treatment failure because I couldn't simply make the choice to get better. At the beginning, I couldn't see that there was anything to recover from. As the years passed, I started to see that the eating disorder was becoming very problematic, but I couldn't understand why I was still stuck. After all, I didn't want to live this way, I just couldn't figure out how to untangle myself. I couldn't figure out how to choose to get well.
I might not have been able to choose recovery, but I do have to continually choose to stay in recovery. It's a recovery that, now healthy, I am capable of making. It's a choice I have to make many times each day, and will everyday for the rest of my life. I have to take responsibility for my ongoing recovery, and I have.
An eating disorder isn't an illness of bad decisions. Bad decisions are things like buying a pair of Crocs and thinking you'll look stylish. Or buying a house in 2008 thinking it will make a good investment. We all make bad decisions in lif, and most of the time they come to bite us in the ass. This isn't to say that the innocent-seeming decisions we make in the course of everyday life have nothing to do with whether or not we will develop anorexia. The question to ask about some of my seemingly insane ideas and decisions during anorexia is this: was I actually capable of behaving differently? Not in the metaphorical or existential sense; if you look on paper, of course, I could have put food on my plate. But in the thick of the terror and the throes of anorexia, could I have actually done so? Most of the time, I would say no.
Researchers have found that, in the brains of people with active anorexia, reasoning abilities are significantly impaired (McCormick et al., 2008). Which means that the ability of someone with an eating disorder to be able to make rational decisions like eating more, not throwing up, or going into a hospital program pretty limited. It's not impossible--I've known many people who have done the hard and heroic work of having to choose recovery.
Still, current treatment systems for eating disorders (where they exist) are predicated on the patient's ability to choose recovery. "If you don't want to get better," patients are told, "then we can't help you." Of course, everyone's job would be lots easier if eating disorder patients wanted to get better, just as everyone's life would be easier if cancer cells stopped multiplying, psychotic patients stopped hearing voices, and a diabetic's pancreas started producing insulin again. The difference is that we don't view these failures as willful behaviors. We don't sit around and wonder whether it was a bad decision on the part of your lung cell to start dividing and not stop. Or whether someone who is acutely psychotic should try and stop paying attention to those imaginary idiots giving them directions. We understand (okay, at least some of us do) that this is just the limitations of the illness.
If people with anorexia could simply stop making the bad decision of not eating, then it wouldn't be an illness and there wouldn't be a million-dollar treatment industry.
The problem with believing that anorexia is a choice is that we leave sufferers to die alone in their apartments after years of illness. We discharge long-term sufferers to either figure out how to live with their illness or die. We tell them it's their choice whether or not to use behaviors. These are the bad decisions, not the eating disorder itself.
I'm not saying that people have no responsibility for their health, nor that people can't choose to recover. The thing is this: we shouldn't rely on it, nor should we expect it. Someone who is drunk can't drive properly, and we know this. We don't expect someone who is slurring their words after 10 beers to be able to drive a car. They might be able to get home safely. But we still tell them to call a cab. It's like that for eating disorders.
The real bad decisions, in my mind, are in the hands of treatment providers who expect that their eating disorder patients are fully competent and capable of making good decisions. Maybe they are, maybe they're not. But the desire to recover shouldn't be necessary for treatment.
27 comments:
Hi Carrie,
Thank you for being an advocate for me my disease. Thank you for saying what I don't have the words to say. I spend so much time banging my head against a wall, yelling at myself for not being able to make better decisions. I get so confused. Thank you for reminding me that there's a disease there and that I'm more than just a dumb girl who can't get her life together.
-Emily
Carrie, I agree with you 100% on this. There is no way that the behaviours of an eating disorder are an active choice. The behaviours are driven by intrusive thoughts that are part of the illness. I didn't 'choose' to have anorexia nervosa and I didn't 'choose' any of the behaviours. They were so compulsive that I 'had' to do them, come what may.
A person can sometimes 'choose' to request treatment for their ED, but not everyone is able to do that. I made a choice to accept treatment (and I am VERY glad that I did). But I have had to work very hard to overcome the intrusive thoughts and compulsive behaviours of my ED.
I feel like I am always making wrong/bad choices when it comes to my Ed which is sending me crazy because I want recovery so much but then don't understand why I choose some of the behsviours I do when I know they keep me bound to Ed.
Hosting my life at the moment as I seem to be falling more and more into the Ed zone and actually don't know how to get out.
Right at the start of my treatment I too believed that I was responsible - that I had made bad decisions for which I must bear at least some responsibility. But this is the illness at work. This is simply another trigger that the illness uses to make us feel bad about ourselves, isolate ourselves and perpetuate the disease. Thinking that you are in any way responsible for being sick should be warning sign, not a sign of a step forward.
I wish I had something wise to add to that, but I think you nailed it. Really glad you posted this.
I disagree with your assessment. I believe there are separate issues here - whether a series of decisions can lead to an eating disorder, whether they can lead you out of an eating disorder, and whether decisions should be used as a source of blame or guilt.
There's no contest that a starving body limits the ability for rational thought, but the thoughts begin before the body is starving. It's important to consider that everyone's eating disorder is different. My nonpurging bulimia/EDNOS originated in a chaotic, abusive childhood and a mother who binged for comfort. You believe yours is primarily biological. Sometimes it begins in college or at other times of significant change & stress. Sometimes it just happens. With SOME girls & women, I believe there is a vulnerability that includes factors such as low self-esteem, poor body image, and lack of coping skills. When a girl with vulnerabilities embarks on a "diet" it can set off a cascade that triggers development of an eating disorder. Triggers includes the physical changes when you are not getting enough to eat (when their intake is cut in half, normal people obsess about food. It's the body's survival response). By providing a culture that encourages body confidence and teaches coping skills, that vulnerability can be reduced. Someone even recognize their own vulnerability and decide to change course before it reaches the point of no return.
Recovery also clearly involves choices. You don't know how to make them initially, but you LEARN to make the right choices. It's not about being good or bad, it's about developing your mental toolkit. Recognizing that there are choices involved in eating disorders doesn't mean that those who suffer from them are bad or "choosing" to be sick. It doesn't mean they're always capable of making good decisions or should be denied treatment. It just means that at some point in recovery, you have to take the reins and start choosing to make healthy decision.
I don't think the medical illness comparisons are exactly accurate either. A paranoid schizophrenic cannot choose not to hear voices, but a person suffering from depression may learn to process experiences differently. Each mental illness has its own characteristics and treatment needs, and not all people with a mental illness have the same causes (mixes of biology & experience) or benefit from the same treatments.
-T
I agree with PJ- I used to believe whole-heartedly that I "chose" everything I did. This was basically for this reason: It was less terrifying to think I was in control of making bad decisions, and to berate myself for it, than to admit that an ed was controlling ME.
It became more and more difficult to assert that I was in control when I tried my damnedest to make GOOD decisions and discovered that... I couldn't. My hands would shake when I tried to measure out food, my mind would go numb, my heart would race, and I'd go on autopilot and just measure out what my head would allow. Sometimes I'd cry because I wanted more. Sometimes I'd be absolutely certain I was measuring accurately, only to find out the next week I'd lost more weight and didn't know how it happened.
Your curious fishsticks article is wildly appropriate here- why don't you provide a link? My whole family has read it, and is now rallying around me, helping me to make the decisions I could not make on my own.
Actually, I'll copy the link here in case anyone is interested and hasn't seen it yet:
http://www.psychologytoday.com/blog/body-evidence/201201/the-curious-incident-the-fish-sticks-in-the-nighttime
Thanks, Carrie, for being so honest.
(Also a great reference would be that article written by Dr. something-something about the things needed for recovery- lists of what the treatment team needs and what the patient needs- and under "not necessary elements" for the patient, "motivation" and "understanding" are listed repeatedly- this article did wonders for my self-forgiveness factor- Do you remember which article that was? Could you post a link to that one too? I'd like to read it again.)
Anon/T,
You are right--recovery (and the initial descent into illness) does involve decision-making. I'm not disputing that. The problem is the capacity to make decisions that are different than those dictated by the illness.
I think we actually agree quite a bit--much of the work in recovery is learning how to make good decisions that will maintain health. I take full responsibility for making those decisions now because I am capable of doing so. Learning how to do this is a tremendous task, but it can be done.
For example, someone who is severely depressed may not be able to engage in therapy and work on making different decisions (ie, getting out of bed, going to therapy). Someone with psychosis must learn to take their meds regularly. So there's learning and responsibility there. I'm not trying to say that there's not.
I just don't think that perseverating on what bad decisions may have led you to the ED is useful except in the context of not repeating history.
I wish I had something more insightful to add, but you and those in the comments pretty much covered it. For me, someone who is most likely "living with" the disease (said ironically), I often feel like it is my fault. I choose to restrict at times and I choose to exercise when I know that I should rest, but an even stronger part of me feels like I have no choice but to do so.
With my OCD, these behaviors provide me relief from the anxiety and mountain of stressful issues--external and internal--that I face on a daily basis. It's my drug and it keeps me relatively calm while also keeping me relatively sick. Lovely.
But I struggle with whether or not it is something within my control; if I'm using it as an excuse to stay stuck or if I really don't have the strength to pull out of this on my own. I don't know, but I do know I wouldn't ever choose to be faced with these questions on a daily basis, like so many of us are.
thank you carrie, I just got told in therapy today that as I was struggling between working out whether I was a good person or a bad person, I had "chosen" an anorexic identity instead, to avoid the question....when I said I didn't buy it because none of this has ever felt like a choice, I was told it was "subconscious"!
So thank you for putting that blog post up in such a timely fashion!
I really like what you wrote here. I completely agree that anorexia and other addictions, such as alcoholism and drug abuse, are not choices because we don't have the cognitive ability to make a choice - the illness(s) doesn't allow us to. However, we can choose to recover...we just need help from others to make the right choices. That is where therapists, doctors, etc. come in - to guide us until we re-develop the cognitive ability to make a choice. I know that I wouldn't have chosen recovery at first, as I did not see myself as anorexic and needing treatment. I needed to have my eyes open by having a doctor point out what I could not see clearly; i.e. that I was dying.
Thank you again!
Thank you, thank you, thank you. LISTEN TO CARRIE, EVERYONE!
Its now believed that ed patients have a very specific serotonin profile, and this supports the evidence of low rates of recovery. I.e. the impulse to binge, purge or starve is a latent genetic and biological response to stressful triggers. EDs are far likely to be contrived and can't be considered to be Chosen behaviours: they are compulsions which people moderate depending on key environmental triggers. Naturally, nutrition has a huge effect upon this, which is why an ed is usually a vicious circle, as this directly affects production of key hormones responsible for mood, thought, sleep and appetite.
Clarissa
www.justdifficult.com
Far LESS LIKELY to be contrived... Mobile keyboard - apologies!
www.justdifficult.com
Regardless of the notion of bad choices vs illness where choice is not a factor, the crux of the problem with treatment is that unlike with other diseases, the patient cannot go in to treatment and be made to recover against their wishes.
A patient with some other kind of disease can fall unconscious and be treated without their express consent, wake up after successful surgery or whatever and be glad their life was saved.
A patient with an ED often hates the doctors and treatment teams who try to treat them; they resist due to their illness, but because their illness doesn't co-opt their mindfulness of desire, no amount of forced treatment will cure any person who doesn't take a voluntary stance toward recovery.
It's a catch 22. Yes, the system sucks. But if you think of it from the point of view of limited resources, and allocation of funding, spending money on treatment for people who want to be treated and who willingly comply with treatment is almost always going to trump spending money on people who despise treatment and who relapse (much the same as persons with addictions forced into rehab) as soon as they leave the confines of IP.
It's a fucked up stand-off, but regardless of how you personally feel about your own path to recovery, personal choice is a huge part of whether or these particular types of illness can be treated successfully.
Kazehana I agree, personal choice is a huge part of whether many current treatments are effective, or even whether patients GET any treatment at all. As my answer to the original question is fairly and squarely "it's a disease" I am very troubled by this. Imagine if people had to be compliant and agree to put their full trust into their oncologists and were blamed for non-compliance and discharged if they questioned their treatment or "chose" to vomit back their chemo.
Carrie, what a brilliant post. And so relevant to what Laura wrote the other day which I also thought was brilliant: http://www.laurassoapbox.net/2012/01/rest-of-story.html#!/2012/01/rest-of-story.html
Brilliant. xx
Thank you for sharing this Carrie. I think that as a teen and adolescent struggling with my ED I was able to use the illness theory in its entirety to eclipse any sort of personal responsiblity for my recovery. As an adult, coping with it, has been increasingly difficult as I feel that social norms and just general lack of awareness and an increasing sense of shame that I'm still dealing with this after so many years, have had me beating myself up overtime because I couldn't understand why I couldn't just manufacture motivation. "CHOOSE RECOVERY" everyone will shout until I am blue in the face. I think it's understanding that at some point I have to be willing to do "Whatever it takes" to change my life is important, but also knowing that the difficulty and compulsion to continue the behaviors is part of hte larger disease.
As shared earlier,I, too have used behaviors to mollify the anxiety from my OCD.
Fabulous blog, Carrie. Interesting discussion in the comments.
I often use the word compulsion (http://en.wikipedia.org/wiki/Compulsive_behavior) when describing the inability of the ed patient to change disordered eating patterns (not "won't" but "can't").
Thank you for this blog.
I am finally trying to rebuild my physical & mental health after 20 years of living under the rules of Anorexia.
It has been 7 months now and progress has been sooooo slow but I have not yet given up.
Every day , hour, meal, bite I aske myself the question why can't I just chose/make the right decisions. And why, after 'deciding' I want to get well, it is still so hard.
Yesterday after meeting with my psychologist I felt so depressed and was ready to give up again. But your blog has renewed my determination to not give up on myself.
Thank you.
Carrie, I've often thought that providers who say that people have to want recovery are really saying that they don't know how to help them. I think it's important for professionals who treat illnesses such as anorexia to realize that if a treatment doesn't work, it's not the patient's fault, it's the treatment that isn't working. Walk on!
But I do agree, that once well (with any illness), people do have to accept that they have to take care of themselves if they want to stay well..
I don't think Dr Troscianko was saying eating disorders are a choice. What I took from it was that she was just looking back and seeing that some of her choices led her further down the path of AN, just as her later choices led her down the path of recovery. I'm recovering from AN and I have certainly experienced many, many times where it seemed like I was lost in the illness and not able to make recovery-oriented decisions, especially when my weight was particularly low. But personally, I find it helpful and empowering to remind myself now (each time I decide to eat) that recovery IS a choice, just as relapse is. I'd rather feel that I have some influence over whether I recover or relapse than just resign myself to the fact that I have an 'illness' and cannot help my actions.
Having said that, I completely agree with you that it's ridiculous and harmful for professionals or anyone else to say that someone has to 'want' to get better before they can be helped. I see that as a cop-out for professionals who find themselves ineffective or feel like AN is too hard to deal with. Anyway, thanks for your post - I always look forward to them.
Is it fair to say that one of the "good decisions" that may need to be made is accepting a higher level of care-- accepting that the eating disorder has taken a hold and is incapacitating you re making wise decisions? Quite the conundrum for an undernourished, irrational brain. Are we left with parents of adult eating disordered individuals taking legal action because their 18 or 40 year old child is in the grips of their eating disordered irrationality? I have wished this would happen for some patients I've seen. Guilt and shame is not the answer. But acceptance of needing help is. Parents and loved ones need to be prepared to step in for any aged child to get them to the point of being able to make the "right" decisions.
As a 28 year old who has been labeled as "treatment resistent" patient with AN, Carie, I cannot tell you how pleased I am to read that I'm not alone in believing there is something a little off when treatment teams demand I "choose" recovery, become frustrated when that is obviously difficult, and dismiss me from the program as unable to accept treatment offered to me. I understand they have limits on who they can allow into their programs, and they don't have the resources to admit a "malingering patient" amongst those who may make "good" decisions. But I find it extremely reductionistic to take my ridgid preoccupation with behaviors and food and control, and expect I will "choose" to drop them at the door. I firmly believe I can't. These are disease behaviors (http://www.ncbi.nlm.nih.gov/pubmed/19223435)and are common, unforgiving, and unfortunate. And if I DON'T magically turn them off, then I'm not worth helping. I have to believe I am worth helping, I am not a lost cause, and despite whether or not I "choose" I've made it this far, and I struggle to maintain my recovery every day.
*Found the post I was looking for- it gives all the necessary and unnecessary ingredients for treatment of eds:
http://www.blog.drsarahravin.com/eating-disorders/active-ingredients/
I don't know how to say this....I'm so shocked...the link that you put about the doctor dying in her apartment? She was one of my doctors. I've been at the Evelina since it first opened due to heart problems that I was born with. My family and I said she was small at the time, I just can't believe that she has actually died.
It used to seem so odd to me as a child that doctors and nurses would be over/underweight despite knowing so well what it could do to them. But as my Mother just said to me: "Whatever happens, whoever they are. They could be the most intelligent person in the world but first, they're just humans, and they're prone to diseases and mistakes just the same as everyone else."
Reading your blog is fantastic, Carrie. You put my thoughts into words so well. Things that were going through my mind and I didn't know how to describe to people. I'm not very intelligent, and I'm only 17. But I've lived with this disease for nearly 5 1/2 years and never been able to say the right things. You've helped me a lot, thank you.
This post has hit me harder than all your others though. I'm nearly 18 and I'll be moving into St Thomas' soon, it's right next door but I'll be in the adults cardiac ward. For the first time this month, one of my nurses mentioned how much weight I've lost in such a short space of time. They're starting to piece together that maybe all my recent complications may be something to do with how I control my weight. It really scares me that they'll find out what's been going on and they'll never let me out of hospital again.
I was born with a weak heart, and I know the choices I make doesn't help it but I just can't stop. I just go on autopilot and forget what I'm doing until I've already done it. I've always felt that, since I'm so closely monitored there was no risk of anything bad happening to my heart. I've been so foolish.
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