April 29, 2012

Good will hunting

How much control do we have over our actions?

People with addictions and mental illness used to strike me as people who just weren't trying hard enough. Sure, they may have had special challenges - bad luck and trauma and difficult lives - but I was sure that despite any challenges that if one wanted it enough one could and SHOULD be able to get control and take care of him or herself.

Eventually I came to understand there were biological elements to these conditions. That knowledge didn't really help, however: I still thought there was choice involved. I thought will power was involved, and although I admired those who kicked the habit or struggled out of depression or regained stability from bipolar illness here's what's telling: I still felt anger and disdain for those who did not. When I knew of someone who lost their job or children because of erratic behaviors I blamed them. I felt they had a choice; perhaps a harder choice than someone without that biology but still, that was only a part.

Strokes seemed different. I recognized that someone with brain damage was genuinely not able to control their thoughts and behaviors.

Now I'm ashamed I used to think that way. I've come so far. The best part is that I truly do understand the thinking of those who still see people with mental health problems as operating independently. I get it that people don't understand how impairing it is to have a mental illness and how wrong it is to regard these conditions as a matter of will power.

There is a role for will power and choice but I think it is fair to assume that people are doing the best they CAN, and that they want to be happy and well as much as we want them to.

I know some people think of a mental health diagnosis, and seeing that diagnosis as saying something is wrong with the brain, as stigmatizing and negative. This is a stage in our society's evolving thinking, an understandable stage, but a tragic one. Until we understand that something is wrong with the brain we will continue to blame the patient and expect the patient to think their way out of their illness.

12 comments:

  1. This is a very powerful post, and very encouraging to read as a former patient, on behalf of those still struggling.
    On the flip side, I do still think it is important to appreciate the role of choice for the patient. Not for caregivers/professionals, because the best help they can give is to provide a framework where the choice to remain ill is limited and disincentivised as much as is humanly possible. But for a patient, there is always still an element of choice - you can't forcibly feed someone forever, and many patients make the first steps, and later recover while still *technically* having the choice to stay ill, because that choice is made so problematic for them by the treatment they are given. I've seen a lot of people in treatment push clinicians to the brink and get to a point where they feel unable to 'choose' in any way to stay well (and felt this impulse myself) so I think rewarding and accepting the role of choice (albeit in the face of forces/anxieties which made it far more difficult that any of the general public could conceive) is very important in longer term recovery.

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  2. I don't see having a diagnosis of mental illness as being stigmatising, but I consider the term 'brain disorder' to be highly stigmatising. The reason for this is that it places all emphasis on the person who is suffering with the mental illness. It's like saying "your brain is fu*ked'.

    No mental illness develops for no reason. There is inherent vulnerability through temperament and personality characteristics, but environmental and (especially) interpersonal stress often plays a dominant role.

    Take PTSD in service people who have been to war, for example. To me it feels immoral and unethical to tell them they have a 'brain disorder'. Sure, if such individuals' brains were scanned using (e.g.) fMRI with appropriate stimulus, there may be a different response to healthy controls, which some would interpret as a 'brain disorder'. But it seems invalidating and unsympathetic to attribute describe PTSD survivors' distress and disability to their brain.

    I know you mean well by describing mental illness as brain disorders, but I just cannot accept the term. It reminds me of the awful time in my teens, when I had both PTSD and AN, and people who were unaware that I had suffered trauma attributed all my difficulties to my apparent 'faulty thinking'. I was deeply distressed when on a day after a night during which I had had the most awful nightmares of past traumas and was unable to function, my father said "you're in a dreadful mood today; have you taken your medication". It was deeply, deeply invalidating.

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  3. Cathy, I hate offending you and more than that hate that we are not on the same page. It would be so much better if we were in a room together talking because you deserve more fulsome answers and FAR more warmth than I can convey here.

    I hear that this term means this to you - I hear you. Yet it doesn't mean that to me or to everyone. I'm going to send you my talk for Austin with hope that it clarifies what I do mean. If it meant what you're hearing I wouldn't say it because I absolutely do NOT mean it that way nor do I think others do - or at least anyone I know.

    I am not invalidating or unsympathetic nor do I think we should be treating people as specimens unable to have agency or will. I don't hear 'brain disorder' as excluding environment in the least - as it is the very organ MOST affected by and affecting the environment. That's what the brain is built for.

    There IS a difference between our thinking in that I believe people with eating disorders do have something awry in their brains. I also believe that difference is treatable and that the treatment involves both medical and psychological intervention.

    I don't find it invalidating to say that someone has a problem with their pancreas when that difference helps explain their blood sugar. I don't find it "faulty" thinking when someone has OCD or anorexia - I find it explanatory to understand that something has happened or developed in the brain and that I cannot expect that person to respond to life the same way until they are well.

    I'm not sure I agree with you on the degree of environment and experience in getting one's brain to an eating disorder or other mental illness - I'm not sure ANYONE is clear on that. I know that for all the studies and attention to environment (including parenting, media, social values, trauma, peers, abuse, etc.) there really hasn't been anything conclusive there. We really don't know. All we KNOW is that the organ affected is the brain, I think. That's all I'm saying when I use the term. And, as I said, I hate that it doesn't sit right with you.

    There is no term that works perfectly. It is too complex a set of issues to shoehorn into a term. I find "mental illness" entirely inadequate because it is interpreted in a range of mutually exclusive ways. I don't like "psychological disorder" and I loathe "biopsychosocial" and "multifactorial" and other terms. We probably can't find a term that all of us will go "Ah, yes, agreed."

    But I can say that whatever term I'm using it is done in search of clarity and with ENORMOUS respect for those who we are aiming to support: the patients. I feel I am acknowledging the work and the courage of patients when I use this term, and it grieves me that it would be seen otherwise. I respect your opinion, though, and carry it heavily to Austin as I must and should.

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  4. Thanks Laura... You know that I have enormous respect for you and your work - and I say that for all the wonderful parents in FEAST that I know. What FEAST does so well is to empower parents to help their sick children. Importantly, FEAST also emphasises the relevance of re-feeding to altering thinking and promoting recovery from anorexia nervosa. I love that FEAST is interested in science. But I don't 'get' the 'brain disorder' thing and why you even need to promote it. We know that EDs are not wilful behaviours or a choice. We know that parents can be hugely important and helpful in promoting recovery.

    My dislike of the term 'brain disorder' is personal. I find it dis-empowering and invalidating. It is about the worst thing anyone could have said to me when I was very ill. However, I know some people with EDs consider the term helpful.

    I know we are are 'on the same page' in most aspects of our understanding of EDs and you are not in the least immoral or unethical; quite the opposite. But I cannot fall in love with the term 'brain disorder', for so many reasons.

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  5. Cathy, I fully comprehend, since I have suffered from a mild but affecting depression for a very, very long time (known as dysthymia), your remark about brain disorder. My brain doesn't work right. I have often wondered what expression might better illustrate a brain disorder and have thought of brain dysfunction, since that's what is going on. I don't like "mental illness" either because too many people because of stigma for too long, think of a person with a mental illness as "crazy", a terribly perjorative term. Your thoughts on terminology?

    Jennifer

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  6. I am providing links to three articles that support 'brain differences' in at least some cases of PTSD, substance abuse and "bad behavior" in children. This certainly does not negate the impact of environment--both to set these patterns into motion, or conversely, to prevent a more vulnerable brain from experiencing them. However, I found them of interest, although none are directly ED-related and they likely don't apply to all cases.

    http://www.nytimes.com/2012/04/26/opinion/kristof-veterans-and-brain-disease.html

    http://www.foxnews.com/health/2012/04/30/study-finds-teens-at-risk-drug-abuse-have-unique-brain-networks/

    http://www.barchester.com/Media/News/2012/4/bad-behaviour-in-children-could-be-result-of-mental-health.htm

    anneUSA

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  7. I agree that "We know that EDs are not wilful behaviours or a choice" but there are plenty of people who still don't. I have had to refrain from hitting one particular doctor on many an occasion when he has made comments about "manipulative anorexics" or treatment (old fashioned in the way I think you and I ELT mean it, behavioural and punitive)which will "snap them out of it" and carefully explaining that treatment isn't like that any more because it didn't work and Arthur Crisp is now dead doesn't seem to have worked.

    A recent looooooooonnnnnnnng paper also contained what I considered very pejorative and emotive language about people who suffer from eating disorders and while I can see that all ideas shouldn't be condemned because of the writing style of their proponents it suddenly struck me on re-reading the paper that the writer would be a lot less emotive and frankly scared of his patients if only he could distance the disorder from the individuals suffering from it.

    Words matter but will probably be interpreted very individually by each and every one of us. I personally don't mind mental illness because at least it does reflect that the patient is ill, not choosing a behaviour. I don't hold up my hands in horror at biopsychosocial although I do find it impossible to spell. Some very good clinicians use it, including the one who in a six word explanation ("it's the brain, dear, the brain") swept away years of guilt and shame in our family about the behaviour and illness of a family member, and since they have helped me and mine I tend to accept it without being too analytical about what it might mean. If it means "it's complex" I'll go with that. If it means "you will need understanding and care on a mental, physical and spiritual level" I'll rejoice (and would add that it goes for diabetes and asthma as well). If it means "let's spend hours thinking what might have caused this without bothering to treat it" then I'll give it a miss. All in all I think I prefer brain dysfunction although I can't really justify why.

    I am glad though that these important questions are being debated and that due weight is being given to them. It is a sign of a field in which people care.

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  8. and yes, I too used to feel that people with mental illnesses weren't trying enough. It has taken my painful years to realise that some of the people I love most just CAN'T pull themselves together and get on with it. I think they appreciate my taking a breath and reminding myself that they are not choosing to not eat, or be unable to get to sleep, or find full time work impossible or whatever just to spite me. Thinking that it is the way their brains work differently to others' helps ME to do that. I don't know whether they know, or care, what term I use to describe that difference. Had better go and ask one of them.

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  9. Wow! Very powerful. Thank you Laura.

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  10. Curious Laura... what is your objection to the bio-psycho-social term? I'll admit it's a mouthful but I don't see what's so objectionable about the actual concept. Even the brain studies with EDs are "not conclusive" in establishing a causal link between brain abnormalities and EDs (what came first??). Why the objection to acknowledging that other factors (yes, even psycho/social factors) may and probably do play a role in many peoples' EDs?

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  11. You're right that there isn't anything inherently wrong with the term biopsychosocial, but I think it is a weasel word. I don't think it just acknowledges all factors it equalizes them, which I think is inaccurate. I find people use the term to throw a bone to the bio part but they really are only interested in the psychosocial.

    I start with the brain. Not only because it is the organ affected but because the brain is where the psycho and the social are, too. The brain is the organ that mediates between the body and experience.

    I don't end with the brain, however, but as I say in my talk these terms are just a compass and not the whole map. No one word is going to tell the whole story.

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  12. In terms of your comment above, Laura, to 'Anonymous'...

    This is where I struggle with the term 'brain disorder':

    By describing EDs as 'brain disorders' you are effectively viewing disturbances in neurological functioning within the brain as the cause of the ED. Yet, the brain is plastic and changes to brain function are continuously occurring on a day-to-day basis in accordance with all the sensory information that reaches the brain.

    The term 'brain disorder' also places all the onus on the ED patient to 'mend their broken brain' - through a change in eating behaviour, or medication. Yet day-to-day social interactions, social support and compassion play a significant role in a changing one's psyche (or brain, if we want to go back to basics). There is no evidence, as yet, that an ED is an inherited 'brain disorder'. The brain imaging techniques that show changes in brain structure and functioning in people with low weight AN may merely be illustrating what happens in response to starvation. The residual changes after weight gain may merely depict 'scars' from the AN. There is no evidence that the brain was structurally abnormal before the onset of AN.

    Moreover, the comments to my latest post suggest that 'free will' and lack of 'anosognosia' do exist in some people with severe AN. They describe making snap decisions to recover (see: http://extralongtail.wordpress.com/2012/05/01/when-you-cant-see-a-future/).

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