Is calling an eating disorder a brain problem a problem?

Personally, my reason for using the term "brain disorders" is not political, strategic, or contrarian.
I use the term because the leading experts have acknowledged it as true. If the truth isn't comfortable for people, yet,  it doesn't make it less important to state.

Eating disorders may turn out to be caused by any number of things - no one really knows - but we do know where the problem is: the brain. This is misunderstood by some to mean that it can only be treated with a pill, or that it can't be treated, or that environment doesn't matter. This is a misunderstanding of the TERM, certainly, but not a reason to stop using it. The brain interacts with the environment: it acts on the world around it and is affected by the world around it. Thoughts change the brain and the brain's function and chemistry changes thoughts - and emotions.

I'm so grateful for the generosity of the head of the NIMH for clarifying this issue a bit in a letter to a parent (and volunteer for AED and F.E.A.S.T.): Dr Insel addresses the "brain disorder" term.

The battle over this term isn't just about stigma. It is about how much of this illness comes from social and personal environment and how much is not. I happen to think social and personal environment have a pretty small part to play in causing the illness but a significant one in supporting recovery. Others think if we changed society and relationships that would prevent eating disorders. That's an active debate we should be having.

But the debate ought not be about where the problem is. The problem is in the brain.


  1. I think its always been extra scary for people to feel "the problem is in the brain"--more than the heart, the lungs, the stomach, etc. The brain is just simply so much of who you ARE that it is frightening and threatens your very personhood. So, we go into denial that anything can effect the brain, as though it's somehow different from other body organs. Of course, this isn't the case, but I understand the emotional difficulty people have accepting this term.

  2. Personally, I'm psyched about the term that Patrick Kennedy is forging ahead with in his post-Congressional quest to rapidly increase research into "brain disorders".
    He recently used the term talking about his illnesses and his time on the Hill, “I came in here trying to hide and to keep the challenge I was facing every day down to a low murmur, to try to fight the shame of suffering from neurological disorders.”
    His term for the bipolar illness, alcoholism and drug abuse: neurological disorders.
    I like it.
    One of the reasons I prefer neurological to 'brain' is because it simply and cosmetically reads more 'brainier'. That cosmetic difference is important in helping to reduce stigma placed unjustly on those suffering from something other than a 'purely' medical condition, it helps reduce the stigma that the body is separate from the brain. I believe his term will help lessen stigma for many people suffering a host of illnesses --which will lead to: more research, increased awareness, and ultimately: more people coming forward for help.

    Now, as someone who used to have a "brain disorder" when I was AN/BN/EDNOS and Body Dysmorphic, I will say that I am not personally averse to the term "brain disorder". I do not take offense to it or find it insulting in any way. Maybe that is because I am someone who never gave a hoot if I was labeled AN/BN/EDNOS or BED...I had an illness and I wanted it out of my life --irregardless of what it was titled or coded as.
    I faced great and sometimes very mean-spirited stigma for having an 'eating disorder'.
    I am afraid that the stigma will continue for a little more time as we continue to label 'disorders' that involve anything other than a 'body part' (yes, I personally believe the brain is a body part:) Can you imagine people having placed stigma on me when I said to them, "I have a leg disorder." after being diagnosed with compartment syndrome? Never once did someone say to me, "You can't heal from that. It was your choice to have compartment syndrome. You were genetically wired to trip while you were running. This is your fault." -- That's because people are civilized enough these days to know that we don't blame people for physical ailments. That wasn't always the case. We have come a long way. But we have a long way to go before all people accept that our brains are not separate from our bodies. Until then, the two best things that I feel I can do to reduced stigma placed on others who suffer is: be healthy myself and continue to educate people (therefore dispelling fear) about the realities of disorders that involve neurological elements.

    Congressman Kennedy holds a vision of a time when research yields genetic markers as keys to the treatment diseases, no longer segregated as “medical” or “mental.”

    Thanks, Laura, for the guts to address this topic.

  3. I think a lot of what 'uneducated' people have issues with is that brain disorder = mental disorder = 'its all in your head' disorder = 'snap out of it' disorder = 'you're doing it all for attention' disorder = 'you're not a worthy person in society' disorder (I know I'm making that a bit more simplistic than it is but you get what I'm saying)
    very difficult to wear if you are the person with this going on, and the people around you have no insight or understanding.

    I have an eating disorder of some description, in some part medically induced by a physical condition I have, and then being kept NPO for days while surgery was consulted... I'm still trying to figure it out... I cant take that step to get proper help
    a-because that would be admitting I cant work it out myself
    b-my mum would freak out if she learnt just how wacked out I am
    c-there is so much stigma still for mental disorders and
    d- despite knowing a bit more about the causation stuff, I still feel so ashamed that somehow I wasn't strong enough work through this and be perfectly fine...
    e-there are so many MEDICAL people who also dont know about eating disorders and I'm sick of being misunderstood...

    anyways I dont know what I'm talking about really, as I'm just going on what I've experienced and I wonder if many people are in the same boat.

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  5. Laura, Thanks for posting this and addressing the issue head on. I'm consistently working to use this expression, too, in my blog. The term "mental illness" carries so much stigma. Thanks, too, for posting the link.

  6. There is an enormous amount of research being done on how the brain works. Below are 3 articles that I found in the last few days on this subject that I find fascinating. The brain pathology involved in mental illness will become increasingly revealed as time goes on, and the labels will become more appropriate as specifics are learned.

    A quote from the first article listed below is: "But fear doesn't come from your heart, your stomach, your throat, or your muscles. Fear begins in your brain, and it is there -- specifically in an almond-shaped structure called the amygdala -- that it is controlled, processed, and let out of the gate to kick off the rest of the fear response." There is so much fear felt by ED sufferers. EDs are ruled by fear. "Delicate Balance in the Brain Controls Fear." "Faulty Circuits: Neuroscience is revealing the malfunctioning connections underlying psychological disorders and forcing psychiatrists to rethink the causes of mental illness." "Pleasurable Behaviors Reduce Stress Via Brain Pathways (by inhibiting anxiety responses), Research Shows."

  7. I think that once EDs become established that they are brain disorders; however, I really don't think anyone can, or should take the aspect of 'self' and 'identity' out of any mental illness, including AN. That is what concerned me about Dr Insel's thrust towards considering mental illness as a product of (effectively) the 'brain going wrong'. It is forgetting that mental illness affects human beings with complex minds, emotions, relationships etc. - and most importantly a sense of self. And to assume that interpersonal factors don’t play a role neglects the idea of brain plasticity and the fact that life events and the stresses these provoke may affect the way the brain works – and make it ‘go wrong’.

    Dr Insel's theory is worrying for all the reasons Thomas Szasz highlights. (Szasz argues that there's not such a thing as mental illness and that the DSM manuals should be gotten rid of).

    I dislike the culture-related body image theory because it is oversimplified and implies that a person's sense of self depends upon what they look like. This leads to the simple and unfounded theories that the likes of Naomi Wolf develop - around EDs being about beauty.

    So, in summary, I would like to say that most mental illness is a mix of the way that a person is (inherent neurological phenomena, their character and temperament) and how they interact with other people, the environment, their health, and how they feel about themselves. It is not as simple as the brain going wrong. I don't see how Dr Insel's theory that viewing mental illnesses as neural phenomena reduces stigma. People don’t usually become depressed for no reason. It would be grossly unjust to tell someone who developed anxiety and depression – and then AN because of (e.g.) bullying by peers, or sexual abuse that their life circumstances were or are irrelevant.

  8. Furthermore, do we really want to backtrack on progress made in treating people with mental illness humanely? If they are just seen as having a messed up brain, then it could lead to the idea that they should be drugged and/or confined to lunatic asylums - an awful thing of our past.

    Refeeding was an essential treatment of my AN, but what helped me most in adapting to being in a weight recovered but emotionally precarious and confused state was psychotherapy. I don't want to see a situation where people with AN are simply viewed as sick 'objects' who have no capacity to express an opinion because their brain is kaputt.

  9. I can't even say 'ED' when it comes to me - when I'm talking to my gp I say 'my issue' or 'my problem'. Mostly I think this is because of the stigma of being labelled as having a 'mental illness'. I accept that it's just saying it as you see it. But is it perhaps easier for people who don't have this problem to say these words? I hate the term 'mental' (sorry, but it makes me just sound 'mental' - and I'm not!!). I don't even think 'brain disorder' would make me feel less like a freak or remove the stigma and make it easier for people to accept.

    I don't hate the term 'neurological disorder' though - maybe because my honors thesis was in neuroanatomy, so I could probably cope with be labelled with something so fancy sounding :-)

  10. Anonymous, if not labeling yourself helps you get help and get better then great. But if avoiding the word keeps you from doing the things you need to do or helps you hide from it then, well: time to name it!

    Cathy, when you say "I think that once EDs become established that they are brain disorders; however, I really don't think anyone can, or should take the aspect of 'self' and 'identity' out of any mental illness" I feel as if we're speaking two different languages. Why would a brain disorder take any of the self or identity out of the picture. We're just talking about the physical location of the problem - the brain. But the brain is where our self and identity reside. Our thoughts and feelings are elicited and influenced by the world around us and our thoughts themselves build and change the brain. Therapy changes the brain!

    When I say "brain disorder" I'm not saying that it is sitting in there acting on its own. Yes, I believe a great deal of mental illness and MENTAL HEALTH are hard-wired, but the tools for influencing that hard wiring are both chemical and interpersonal.

  11. You are right, of course. Not naming it does help me hide. But it's what I'm hiding from that's important. I'm so afraid of losing the respect of my friends and my collegues. I'm afraid they will see me as pathetic and mental. It is that stigma that frightens me so much. That stigma I wish didn't exist so I could admit to what is going on. Labels do matter because it is what the uninformed use as fact to pass judgment.
    (and I'm sorry that I am such a coward and commenting as anon)

  12. Anonymous,

    It isn't cowardly to keep your name private. But there is a difference between privacy and secrecy. Privacy is for good reasons, secrecy is to hide bad things. Keeping one's name private is not bad.

    But keeping one's illness secret is different. It is the truth, and the secrecy feeds the illness. Stigma isn't a good enough reason to stay ill. I think it is an excuse. So people think you're 'pathetic and mental.' You're not. Their belief system is the problem. Why should other people's errors define what you believe.

    People judge. That's THEIR problem.

    Getting better is more important than anything. Become an activist later, but get well now. Help others with that stigma later - but you can't if you're hiding and not well.

    Oh, and keep in mind that *I* hid my real name for years - so I do understand the fears. I thought at the time it was the right thing to do. Now I regret it. But either way it didn't change the need to get good treatment - openly or not.

  13. Thank you - that's quite a lot for me to think about this early on a sunday morning. No, I didn't realise that you ever hid your name. I just assumed that you had always been this amazing advocate that I see before me :-)
    But as I type this one of my kids has come up and kissed me on the cheek - which reminds me (as it does everyday) that although I think I'm protecting them as much as me by hiding this, I also need to face it for them too.


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