January 16, 2012

what does the term "brain disorder" do for you?

I'm preparing a presentation about the term "brain disorder" as applied to eating disorders.

I'm interested to hear from friends and foes and thinkers, all: what does this term mean to you? How does it feel? When you first heard this term did it upset or enlighten you? If you don't use it, why? If you do, why?

24 comments:

  1. I prefer to think of myself as having disordered thinking patterns that then contributed to my disordered eating. A brain disorder suggests 'a' cause that is irreversible or locks the ED into a single, fixed label. I don't like using it, for me, because it does not admit the possibility of fluid causes and contributing factors.

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  2. Kate, these are concerns that I often hear, and respect. I'm wondering why "brain disorder" implies these things - because I don't look at the problem as irreversable or fluid or having contributing factors. If we called diabetes a pancreas disorder it wouldn't imply those things. Is it because it is the brain, or because of a (reasonable!) fear of misunderstanding a complex problem?

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  3. Thinking of my illness as a brain disorder has helped me move past guilt and shame. Maybe it's self-indulgence, but the notion that I have a genuine, genetic, biological disease--a brain disorder--helps me get through every day. It's immensely comforting to remember I didn't "do this to myself" out of weakness or self-centeredness or spite.

    So those are my selfish reasons. But above all, I believe we should use the term best supported by the evidence, whatever that turns out to be.

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  4. I know that I have I had this conversation with you in the past (in various guises) and as much as I see your point, I think I would see it a lot more if I wasn't the one on the receiving end. I do believe that an eating disorder is an illness. I do believe that it is not a choice. And I can see it constantly reoccurring throughout my family tree. But it is still the stigma attached to the word 'brain'. Any label that has the word 'brain' in it will immediately be associated with crazy (IMO). I know that you don't see it that way - but you are educated and you are sympathetic. I have to deal with the real world implications of these words - especially in my chosen career. The implication that I might just be a little nuts would not go down well. I admit it is better than 'mental' and I also admit that I don't have a better suggestion for you.
    But having said all that I do know that the only way to break down stigma is to talk about it.

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  5. I don't use it. i find it crude and simplistic if presented with little or no elaboration. On it's own it doesn't mean much. It's unnecessarily polarizing when a fuller, more nuanced description of eating disorders (as a biologically based mental illnesses influenced by genetics, neurobiology and environment) has the potential to increase understanding.

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  6. I use it so instead of calling it a "biologically based mental illness influenced by genetics, neurobiology and environment" as has the Anonymous poster, I say "biologically based brain disorder influenced, etc., etc." I liked the term Dr. Insel used although even there I felt it would not be understood - brain arythmia. I do find myself using the term "mental Illness" because more people are accustomed to that but I don't like it.

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  7. My daughter is recovering from an eating disorder. She sees this as a brain problem, she's wired differently. She has ADHD too and that is clearly a brain disorder, so she feels relatively comfortable having a "brain disorder". She actually wants to study neuroscience. She has learned that brains can be rewired with meditation and mindfulness and the right kinds of therapy and that brain disorders like eating disorders and depression can be fixed this way. So, it's in the eye of the beholder I guess.

    What's better, a brain disorder or mental illness? The term mental illness implies, well, many uncomfortable things, but in our society an eating disorder can be thought of in many ways, to some it appears to be a lifestyle choice!

    People have heart disorders and it doesn't have the same implications. In our society, a brain disorder may imply that one person has lesser value than another person since we are often judged by our brains as if they equaled the soul. That's the problem I think. Our disabled brothers and sisters have struggled with this for a long time. And should not we all join together to fight any type of judgment rather than split off one type of brain disorder as being not on the same level as another and so therefore needing a separate term???

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  8. Coming from a medical background I don't use it either. I tend to agree with the last poster in that it doesn't really give us any information but is a rather vague term. If I want to get the point I think you're aiming for across I'd call it a biologically based disorder or something along those lines.

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  9. I have come round to the phrase, but it was only when Dr Insel added "circuitry" into it during his talk at the symposium that I really saw where he was coming from. Brain circuitry disorder makes an awful lot more sense to me. Before that, I approached "brain disorder" from the organic, but-there's-no-hole-in-my-head front. Brain disorder makes me think of lesions and visible pathology, brain CIRCUITRY disorder and the analogy of heart arrhythmias makes perfect sense. Unless you have hours to explain the nuances of the concept to someone, confusion seems inevitable.

    Of course, some people object to the idea because they think it implies that EDs are entirely biological. In the most literal sense of this sentence I do actually believe that. I believe consciousness, thoughts and emotions are biological phenomena, so there's nothing left to be otherwise. That argument isn't convincing to some who believe in a soul. The other problem is that many sufferers/people in recovery feel threatened by the mention of biology or brain disorders, because it seems to invalidate any traumatic or environmental triggers they have experienced. I had a difficult adolescence including a seriously traumatic event, and I don't think calling my anorexia a brain disorder invalidates that at all - after all, your brain isn't just an inflexible lump of matter, it changes in response to your environment. Trauma has a measurable, sometimes visible impact on the brain.

    So I use brain circuitry disorder, but I can see why others object. Some just don't understand - OCD is usually seen as a brain circuitry disorder and to me that seems kind of obvious, but there are still competing theories out there which stress parenting or other psychological processes.

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  10. Actually after Brian Lasks paper http://media.wiley.com/product_data/excerpt/37/04706700/0470670037-172.pdf " why clinicians should loved neuroscience". Brain disorder seems most appropriate. It doesn't define specific treatment but it clearly outlines etiology of Brain function/disfunction and seems most appropriate.

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  11. I have never had a problem with mental illness as a tag. Probably because I suffered my first diagnosed bout in my early 20's. However, when I came across brain disorder when my daughter became ill, it was such a relief. It took me forever to use it as a term because I had spent so long writing and discussing mental illness but it seemed to be much more of a "grown up" way of describing what had happened. It also gets rid of the "mental" tag - you don't hear people saying "You're f*****g disordered" in films, do you?

    I understand the discomfort about the term "disorder", mainly because I do wonder what an ordered brain looks like. I also think we have such a lot to learn about the brain.

    Whatever caused it (and I too, would hate to invalidate anyone's experiences or traumas that may have contributed to their illness), I am more comfortable with my own particular image of viewing the brain as a kind of car engine that has a few faulty spark plugs.

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  12. It worth remembering that there are brain disorders, epilepsy for example, that are not psychiatric. It's a huge category that encompasses more than psychiatric/mental/behavioral (whatever you want to call them--I prefer psychiatric) disorders.

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  13. Brain disorder in relation to eating disorders, what does it mean to me? ---
    As a professional in the field (in the areas of education and prevention, as well as policy) I think this "classification" is both good and problematic. I see it as good in terms of potential research funding, I see it as problematic for how it potentially affects the training of, say, primary care doctors on identification of and treatment of eating disorders.
    Labeling an illness with a particular classification has so many important consequences, so to find the end all be all label for what we currently call "eating disorders" in the term "brain disorder", I don't think it's the best choice. I think our pursuit, if we want to prevent and treat those who suffer, needs to focus on the complex etiology, symptomatology, recovery, and more, which are not all solely brain-based.
    So based on what I know about eating disorders and based on what I know about up and coming research, funding and treatment of brain disorders, I currently feel a more appropriate/accurate classification silo is: brain-related disorder.

    We're living in a time where new data and new research continues to teach us more and more about 'eating disorders', and as this continues to shift and progress, so too might my preferred classification silo.

    Keep your readers posted! ~Kathleen --friend and thinker, not foe :)

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  14. I do not like the term 'brain disorder' when applied to mental illness or to established neurodevelopmental conditions such as autism. This is not because I do not believe that the brain is involved in eliciting or maintaining the symptoms of mental illnesses, including eating disorders (EDs), but because the term is pejorative. There is not such a thing as a 'normal' brain or 'normal' mental health because what we define as 'normal' includes large variations in human traits and states. And so I am concerned that if, as a society, we go about labelling some people as 'brain disordered' and others not, this could lead to social exclusion, or worse still, a return to the days when people with mental illnesses were incarcerated in dreadful asylums and treated appallingly.

    As far as the science of EDs go... There is, as yet, insufficient evidence to support the idea that all individuals with EDs have a neurodevelopmental condition. There is some evidence to support the hypothesis that perhaps 20% of individuals with anorexia nervosa (AN) have an autistic spectrum condition, but it is not clear whether this is true of the remaining (approx.) 80%. There IS sufficient evidence from (e.g.) fMRI studies to support the idea that the brain is functioning in an unusual manner in people with low weight AN, but to what extent this pattern of functioning is neurodevelopmental, or a product of starvation is not yet clear.

    Identified neurodevelopmental and personality features that may make an individual susceptible to developing AN, at least, are attention to detail and difficulties with set-shifting. These traits are not 'disordered' in themselves. They are what can lead to talent, even genius in savants. Of course, they are not helpful if they contribute to the development of AN.

    So, in summary, I support the idea that the brain is involved in some way in the cause of EDs, but I dislike the term 'brain disorder'. It's the 'disorder' bit that sounds pejorative when applied to the brain - which is the root of our identity and self-worth.

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  15. Laura, Brain Disorder means to me that something has temporarily gone wrong and that it can be fixed. For Eating Disorder sufferers and families it feels to me a much softer and kinder word that Mental Illness. It separates ED sufferers from Pschiatric Wards (that is a serious statement- Many Ed sufferers are being treated in Psychiatric wards with Schizophrenics and other mental illnesses, which I think is wrong). We know that Eating Disorders can be treated with medicine, like food and other treatment and we know that Recovery is possible.

    Also, you know I have been a long-time fan/follower for quite a while. I did a post on my blog where you were mentioned. Thought you would like to see:

    http://wp.me/s1RmwR-bloggers

    Keep up the good work. I believe in you. I signed up for the Around The Dinner Table so that I can understand how it works and perhaps you can help me write about it and promote at a future day.

    Take care of you and your family.

    Fondly,

    Karen

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  16. *I* like brain disorder, but the pejoritive connotations of "disorder" ARE problematic.

    The other issue is something that you touched up against with the diabetes/pancreas disorder example: are you clinically symptomatic or not?

    "Active" ED is absolutely, to steal Julie O'Toole's phrasiology, a brain-based malignancy. It's a state of toxic encephalopathy. It's analagous in one way to poorly controlled diabetes insofar as the chronic effects of the state are doing systemic organ damage that will wind up being life shortening - or life threatening - if not addressed.

    And IMO, anything that causes widespread sterotypical behaviors cannot be called anything BUT neurobiological in origin.

    However, are those descriptors accurate or useful for someone with treated ED? Or for a kid who is at risk?

    So, (big surprise!) I lean in favor of something a little more unwieldy than "brain disorder" that satisfies my need for precision. Eating disorders are neurobiologically based diseases, and their cognitive and behavioral components are highly treatable.

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  17. I am so appreciating this conversation, everyone. The term - ALL these terms - are like a Rorschach Test of our beliefs about the illness. What is coming clear to me is that people who like and use the term brain disorder do so for different reasons and with different belief systems than those who do not. It isn't just that people disagree about the term: their disagreement reveals how they disagree about the illness.

    I'm also fascinated at what I'm learning about how people perceive the term "mental." Plus, it has different meaning to British and American English users.

    Still cogitating....and listening.

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  18. Katie, I believe you've nailed it for me. Your explanation brings clarity and respect to those with other concerns.

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  19. I don't think I fundamentally disagree with (most) people who use the term brain disorder about the nature of the illness, but just don't think it's the clearest, most accurate way of describing eating disorders. A lot of people commenting seem to agree that biological/neurological predisposition plays a role but use different (longer and more explanatory) terminology. It doesn't seem like a Rorschach test to me.

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  20. I think one day AN will be seen as a genetic disorder that has neurological and psychological implications.

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  21. I prefer to take a functional approach to the issue. In other words, how does categorization of something affect real world circumstances? From that perspective, if we call eating disorders brain disorders, then we fit eating disorders into health and medical insurance coverage, which means that sufferers are entitled to receive professional help paid for by insurance companies. If we say, on the other hand, that eating disorders are not biologically-based illnesses, then we deprive sufferers of the right to insurance coverage to pay for treatment. In that regard, the label makes a real difference.

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  22. Something that I think is interesting is that the field of psychology developed without much information about the brain, how it develops, how it works, etc. Now the field of neuroscience is just blossoming with new discoveries every day, how the brain works, how genetics, nutrition, medication, stress and the environment all can affect the structure and function of the brain. Changing the concept of mental illnesses to brain disorders is a reflection of this shift to a different kind of understanding of how the brain works. And this way of understanding has the power to help us find new treatments that actually work!!!! I for one would like to see more focus on finding EFFECTIVE treatments for eating disorders and try to forge ahead in a new way, in which there is no emotional or societal stigma attached to any specific words that may be used about eating disorders....

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  23. I'm also fascinated at what I'm learning about how people perceive the term "mental." Plus, it has different meaning to British and American English users.

    You are so right

    http://charlotteschuntering.blogspot.com/2012/01/mental.html

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  24. I feel like the term "mental illness" is tied up in misconceptions about mental illnesses being less real or more indicating of some kind of character flaw than physical illnesses. I think people will judge me a lot more if I say that I have a mental illness than if I have any other disease. For me, "brain disorder" adds legitimacy to the illness.

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