"Brain disorder"

I'll plead guilty--I've thrown around the phrase "brain disorder" in my time, even here on this blog.

But what the hell does this term even MEAN?!?

Here's the problem: there's no consensus.  Not in the field of eating disorders, not in the field of psychiatry, not in mental health.  Obviously, the idea of "brain disorder" means that biology is involved, which, for this trained biochemist anyways, is pretty darn obvious.

In a recent email, my friend Sarah Ravin said this:

I conceptualize a brain disorder as a disease or disorder that originates in the brain and influences mood, thinking, learning, and/or behavior. So EDs, autism, bipolar disorder, OCD, Alzheimers, and most of the DSM would fall under this category.

To me, “brain disorder” does NOT mean:
  • Environment does not play a role in its development
  • Environment does not play a role in recovery
  • It is 100% biologically based
  • It can only be treated by physician or with a pill
  • Psychological interventions won’t help
  • The patient can’t do anything to influence the outcome

None of the above is true for ANY brain disorder, whether we’re talking about one that is commonly accepted as “biologically based” or not.

In fact, I don’t know of any physical disease or medical condition in which any of the above is true.

I think this is, bar none, the best explaination of what a "brain disorder" is that I have ever read.  I think that if professionals can be more clear about what they mean when they say "brain disorder" then people can start understanding and integrating biology into their picture of what eating disorders actually are.  Understanding the biology of EDs has actually left me far more hopeful than any other explanation.  No, biology doesn't mean that I'm hopelessly f*cked, but it does help me approach recovery from a more realistic standpoint.  Even if/when I resolve all of my ED issues, I will remain vulnerable to relapse.  That doesn't mean I will be tortured by AN thoughts, or even have them at all, but that it's also smart to be cautious.

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Cathy (UK) said...

I guess I have mixed feelings about the term 'brain disorder'. If someone were to explain some of my past and present 'issues/difficulties/conditions' (or whatever one wants to call them..) by saying I have a 'brain disorder' I would honestly feel 'put out'. To me the term 'brain disorder' sounds pejorative, but perhaps that's just the way my mind interprets it. I have been interested to learn that for DSM V, the term 'disorder' has been replaced with 'type' when describing certain psychological difficulties. Similarly, in the UK, the term 'condition' is often used as a replacement for 'disorder'.

At one time homosexuality appeared in the DSM and was considered a disorder. Now, it may be that homosexuality relates in some way to neurological factors, just as does heterosexuality. But do we say that people with either sexual preference has a brain 'disorder'? Some people with high functioning autism or gender identity issues would argue they have no disorder if they are coping well in society..

I could write reams on this issue from an ethical/moral standpoint - but there's not enough space here. It was only in the 1980s that in the UK Mental Hospitals (or 'Lunatic Asylums', where people with mental illness were locked away, and sometimes experimented on against their will) were shut down. I am not suggesting that any term to describe 'issues with the operation of the mind' (which cause distress to oneself or to others) is or is not correct, or will lead to good and moral people being locked away from society; however, the term 'brain disorder' makes me feel very uncomfortable, for a variety of moral and ethical reasons.

VoiceinRecovery said...

This is a VERY important topic to discuss. I think we need to open up the discussion to include brain, environment, genes. Take an inclusive approach, rather than a this vs that approach. We do not live in a bubble, and while we are predisposed to certain personality, and I LOVE and am fascinated with the brain and it helps to explain parts of mental health, but not all of it. I personally do not like saying - oh this person has a brain disorder - because I think people take that in VERY different ways. I think we need to discuss this more and often to clarify - but when we have SO many people with different takes on things, it is challenging.

Katie said...

I've got to agree with the first two commenters. It is so easy to misinterpret the term "brain disorder", and there is evidence to suggest that medicalising mental illnesses increases rather than lessens stigma against sufferers. That doesn't mean that we should pretend that it's all environmental to reduce stigma, but I think it can be more effective to explain how the illness comes about than label it. Telling the public that biology loads the gun and the environment pulls the trigger is a great way of explaining it, and it opens people up to learning more about the biology. But without Dr Ravin's explanation, the term brain disorder is far too open to misinterpretation, and so I'm not sure it's the most helpful way to label eating disorders.

In short, not arguing with the biology...just the phrasing.

Cathy (UK) said...

*Error*: I meant to write above: "But do we say that people with either sexual preference HAVE a brain 'disorder'?"

As far as I can see, the only advantage of describing EDs (the subject discussed most frequently on this blog) as 'brain disorders' is that it negates any sense of guilt or blame - for anyone. That is to say that no-one need be blamed or need feel guilty, because the individual with the ED (supposedly) has a 'brain malfunction'. That might make sufferer or carer feel happier (or perhaps not...).

But what if the trigger for the onset of food restriction that culminated in an ED was abuse, or bullying, and the child was perfectly healthy (if perhaps rather anxious and perfectionistic) before such trauma? They may have a measureable alteration or difference in brain biochemistry through fMRI, but for that child to be told that he or she has a disordered brain seems unjust - particularly because many such individuals interpret their ED in the context of the trauma they experienced.

And, as far as EDs go, no researcher has to date proven a definitive genetic or neurological cause of ED. We are still at the stage of hypothesis testing - and may be forever more. Neither do we have any effective medication, at least for AN. I personally view EDs as widely heterogeneous illnesses and it doesn't surprise me that there is no effective one-size-fits-all treatment.

Charlotte UK said...

I am trying to phrase this without sounding confrontational, as I am genuinely interested,

What is the difference between describing blood disorders and brain disorders as in http://en.wikipedia.org/wiki/Category:Blood_disorders?

I would be interested in your (collective) take.

hm said...

Webster's def. of "disorder": an abnormal physical or mental condition

From a Latin verb meaning to regulate, which morphed into a noun meaning an irregularity or an alteration.

(Sesame Street def: "One of these things is not like the others...")

"Disorder" is not an insult- it's just a fact- it simply means that something is not in line with most other things. Saying I have a brain disorder should not be any more shameful or awkward than a blood disorder. It's not the spirit's fault that the machine of the body doesn't always work exactly right.

The only way to de-stigmatize a word is to use it bravely and without shame. "Brain disorder" feels shameful because of what has been done to and said about people who have one. Changing over to a pc term, in my opinion, coddles that viewpoint- it reaffirms that "disorder" is a shameful thing and we need to tiptoe around it and call it something more gentle. When, in fact, the definition of disorder is not offensive or shameful. It's just fact. If I have a disorder, my brain works differently than most other peoples'.

I'm not saying I haven't struggled with the shame of the term. I fought the label for years, because I didn't believe it, and also because I was ashamed and afraid to admit to it. But recently I've come at it from a scientific viewpoint, and the more I say the term "disorder" out loud and claim that I have one, and at the same time acknowledge my intelligence and aptitude, the less shame I feel and the more empowered I am to UNDERSTAND this disorder and how it works.

I have a disorder. AND I am fucking smart. And contributing all kinds of positively to society.

(p.s. I'm all kinds of brave enough to say that on here... but would never make a public announcement. That's ok. Baby steps! I'm so much further than I was a few months ago!)

Cathy (UK) said...

By the way, I don't dispute a biological basis for EDs and other mental illnesses whatsoever, even though these biological bases are as yet undefined.

It's the term 'disorder' that I dislike, the general pigeon-holing and categorisation of people as disordered or otherwise, and the prejudice and social exclusion this can lead to. There is no such thing as 'normal', except in statistics, because many human characteristics are normally distributed within a sufficiently large population.

Charlotte asked: "What is the difference between describing blood disorders and brain disorders?" For me it's the brain-mind link, how we judge people, and the associated ethical issues. We don't judge people on their blood, but we do on their minds.

Anyhow I have been waaaaaay to 'gobby' here. Sorry Carrie. This is a really good post and I appreciate everything you and Sarah Ravin have said. I guess that the whole brain-disorder-stigma issue 'ruffles my feathers' somewhat. On that note, it is bedtime and I will retreat to my nest.

Katie said...

hm - It's not about coddling people, it's about getting them to listen to you. I am very open about my eating disorder, and I do outreach work in local schools when I can, talking to adolescent students about eating disorders. I start off on familiar territory - my story, some stats about EDs, definitions etc. Then I drop in the Minnesota study and the implications of that, and before you know it we're discussing genetics and the possible links to OCD and autism and they haven't asked me a single question about the media for at least ten minutes ;) But if I just started out by telling them that anorexia is a brain disorder I'd lose them, because it's so far removed from their preconceptions. It's like that weird and slightly disturbing story about boiling frogs - if you try to drop a frog into hot water it'll jump out immediately, but if you put it in cold water and heat it slowly it'll...uh, boil to death. And all of this from a vegetarian :P I know that's a weird analogy but it's a useful one, because it really does help when you're trying to get people to change their ideas on eating disorders from what the media tell them (skinny celebrities!) to what the research shows.

hm said...

There are plenty of categorizations of people that are not "disordered." There are personality types and subtypes. I think where a "disorder" comes into play is when someone's brain is functioning in a destructive way- either significantly disrupting or shortening the possibility of a normal life that a person should have. Being told my heart would give me 10 or at most 15 more years if I kept going the way I was going was what woke me up and got me to look into whether or not I had a disorder. Continuing to deny being "disordered," for me, meant that I do not want to see my children grow up, get married, and have children- that's a pretty big loss. Until I saw what following my disordered brain's leanings would cost me, I vehemently denied being disordered. Now I embrace it so that I can attempt to conquer it.

Cathy (UK)- I personally think it's wonderful that you are loquacious- You have such interesting thoughts! And please don't think I am discounting your viewpoint. I hear you on your point that a big difference between a brain and a blood disorder is that people JUDGE it differently. But that just means that people tend to suck- it doesn't mean that having a brain disorder is any more shame-worthy than having a blood disorder.

hm said...

Katie- I totally hear you on that- You catch more bees with honey than vinegar. If the word "disorder" is off-putting to people who could use help, then it makes sense to rephrase in order to hold their attention.

I think I might feel differently about how to phrase it if I was reaching out to someone with a disorder than I do in regards to referring to myself and my own issues. For me, it is best to be raw and honest with myself for 2 reasons: 1. To embrace the truth in an effort to overpower the urge to feel ashamed, and 2. To stick with listening to those who are trying to help me when I firmly believe I KNOW BETTER.

I need to not coddle myself, or I won't recover, I won't listen, I won't cooperate. If I call this "just my personality," like I did for years, I'll end up letting it kill me.

But I hear you that some people need to be approached more gently. Different strokes for different folks. :)

A:) said...

I am going to comment because I feel strongly about it.

I HATE the term brain disorder and I would go as far to say that it is not being used properly when used to describe EDs. . .

I like the term "biologically based mental illness" -- because it acknowledges the biological basis while also noting that there is a psychological and environmental component.

When I think of brain disorder, I tend to think of autism, Huntingtons, Alzheimer's, etc. I think these are clearly disorders of the brain in that there is something we can definitively pin-point that is wrong. There is an IMPAIRMENT, DEFICIT or DYSFUNCTION - functionally, structurally, etc.

In your Sunday Smorgusboard, one of the ED articles mentioned that the personalitity trains seen in EDs were more examples of sub-optimal functioning on a continuum then actual impairments or deficiencies. I think these personality traits can manifest to create a syndrome or collection of symptoms that cause a disorder. Environment influences and perpetuates behavioural patterns.

To reduce AN or EDs to a brain disorder is like trying to reduce biology to biochemistry. There are too many properties in the ED "system" that cannot be explained by mere biology. Similarly, cross-talk between biological systems cannot be explained by the amino acid structure of specific proteins in that pathway. There are emergent properties of complex systems that cannot be explained by focusing on one component.

The mental illness is biologically based -- yes. But as of yet, there is no concrete evidence that it is a "brain disorder" in the traditional sense.

I realize Dr. Ravin's brain disorder definition encompasses environmental affects etc. -- but I am concerned that other professionals would not see it that way and either would the public.

Anorexia is not a brain disorder. It is a biologically based mental illness.


Charlotte UK said...

Wow - I love you lot.

As a parent, who is often asked about anorexia, I have to start at a very basic level. I am often faced by peers who believe that anorexia is just "a diet" and that my daughter was being wilful and stupid by not eating.

I often use the analogy of diabetes. If you don't eat regularly and inject, you get very ill and go on to explain that whereas diabetes is a sort of blood disorder (ducking below parapet here as am going to be told it's not, but am dealing with non-sciencey people!), anorexia is a brain disorder. I think if I used the whole biological-based brain disease thing, I would loose their interest.

Personally, I suffer from depression - a brain disorder, in my book - and I am very happy and open about it. If people choose to avoid me through their ignorance, it is their loss. It may be a stigma for some, but that is THEIR problem, not mine.

How am I doing so far?


Cathy (UK) said...

As Charlotte helpfully comment above, it is important that parents/doctors/therapists don't view people with an ED as being wilful. An ED sufferer is NOT a rebellious brat who is trying to get his/her own way to control others.

That, I absolutely agree with. I didn't 'choose' to develop AN, just as I didn't choose to be very anxious, obsessive, perfectionistic, over-sensitive etc. But that is my personality, and personality is determined by a mix of genetics and environment (or nature and nurture), including epigenetics. Also, my AN was partly triggered by bullying, abuse and how this trauma made me feel about myself and the world.

Research suggests that starvation increases the expression of many of the characteristics that define AN, and so re-feeding is essential. But will re-feeding alone 'magically' cure AN? Occasionally; but rarely. And if re-feeding alone does 'work' we don't know that it is mending some specific and defined brain defect. Any such defect has not been defined and remains both hypothetical and elusive. And that is where AN differs from (say) type I diabetes, for which the mechanisms are clearly defined and the treatment more straightforward.

I guess that whether people choose to describe personal issues relating to psychological wellbeing as a brain disorder or not is personal.

Katie said...

Carrie, one of the reasons I love your blog so much is that I am ridiculously shy and anti-confrontational, and the people who reply to your posts are so nice! Your blog really helps me clarify my thoughts on things because I feel safe enough to do so, knowing that no one is going to bite my head off :P I do hope you don't mind...

I found learning about the biological basis of eating disorders really helpful when I was recovering too, because it helped me separate my personality, values and beliefs from the effects of starvation, so I could ignore all the ED thoughts and do what I had to do to get well. I got into a few arguments with people then over the whole nature/nurture thing - my mum insisted that it couldn't be biological because no one in the family had an eating disorder, ignoring the fact that a) SEVERAL people in my family have had eating disorders and b) we're not talking about the same genetic process in, say, cystic fibrosis. The way I saw it a whole group of different genes probably contributed, creating different personality traits which led to the predisposition for AN, but there was usually an environmental trigger to start the ball rolling and a degree of weight loss/malnutrition to lock the person into the pattern of behaviours. I always felt that my eating disorder was more like another aspect of my OCD, with the focus on numbers and weight loss rather than my rituals based around organising and checking from a few years ago. I usually call my OCD a neurological disorder, but I also recognise the great complexity that seemed to accompany my anorexia - trauma triggered it, I went through a major personality change once I developed PTSD (which, after all, affected the brain physically), and that seemed to be the catalyst for my eating disorder changing from EDNOS to purely restrictive anorexia (although still atypical, as I didn't have any body dysmorphia).

I have absolutely no idea if I'm explaining the same or a different idea to everyone else here :P probably the same as some, different to others!

hm said...

Can I just take a moment to vent here- Webster's dictionary online gives this definition for anorexia nervosa:

"a serious disorder in eating behavior primarily of young women in their teens and early twenties that is characterized especially by a pathological fear of weight gain leading to faulty eating patterns, malnutrition, and usually excessive weight loss"

My dietitian, therapist, and I have spent literally MONTHS looking for a doc who is ED savvy to take me on and we keep getting either idiots who just want to try it out but don't know what they're doing or docs who say, sorry, we only take patients under 30. *#&$!

How hard would it be to take that one little bit out about the age, and would that REALLY change the definition of anorexia?!?! Miriam Freaking Webster is not helping my cause.

I can't even BEGIN to imagine how difficult it must be for a man to find help- at least I USED to be a woman in my early twenties- he doesn't even get a casual mention.

Somebody needs to update the freaking dictionary. Ugh.

Cathy (UK) said...

I have already said far too much on this post (because it's something I feel very strongly about...), but I would like to emphasise that despite me being like a dog with a bone in terms of my viewpoint relating to science, ethics, morals etc., absolutely NONE of my debating is personally directed. I argue with science/data and not with people.

Mouth zipped shut now :)

Charlotte UK said...


Unzip immediately. This is a very interesting discussion and demonstrates to me how the whole "sick in the head" stigma is still going strong and it SHOULDN'T. Grrrr

I think different people are affected in different ways, just as they are with any other "disease". Some an sufferers exhibit certain traits which are totally absent in others. It is the inability of the clinicians to stop generalising (such as the ridiculous all an sufferers think of themselves as fat and have a distorted view of themselves in the mirror). In our experience, this condition was about inexplicable fear and numbers. The dysmorphia raised its head for a matter of weeks, after her therapist asked her if she viewed herself as fat. Grrrrrr

How can we turn around the whole stigma attached to eating disorders, just as has been done with Aids? Then the definition of description of this illness will not be pejorative but merely shorthand for what it actually is, not what it is perceived to be now.

Dr. Ravin said...

Thank you, Carrie, for posting this - I am very flattered. Thank you to everyone who commented - I found each comment to be thoughtful and valid.

I do want to comment on Cathy's second post regarding EDs which are triggered by abuse. While I understand why some people may be offended by the use of "brain disorder" in this context, their discomfort may stem from a misunderstanding of the term brain disorder.

The fact that the public misunderstands a term does not mean that we should discard that term. Rather, we should educate the public.

All psychiatric disorders are, in my opinion, brain disorders. PTSD is by definition triggered by trauma, and it is a brain disorder. Traumatic brain injuries and concussions can lead to depression and psychosis, which are brain disorders.

As I see it, the fact that a physical or psychological trauma triggered a brain disorder does not change the fact that it is a brain disorder. Perhaps the brain was not "disordered" before the trauma, but the combination of trauma and preexisting brain wiring resulted in a brain disorder.

Cathy (UK) said...

@Dr Ravin: Thanks for commenting on my comment. I'd be interested to know your answer to the following questions, if that's OK:

1. How do you view the link between the brain and the mind, and what is your opinion on Dualism? The mind is quite easy to test; however, the brain is more difficult. We can investigate metabolic activity of various regions of the brain in response to a variety of sensory cues using techniques such as fMRI, and make cross-sectional comparisons between symptomatic and asymptomatic individuals, or track longitudinal changes within the same individual over time, but can we categorically define most mental illnesses as 'brain disorders' using such techniques? Is there a clear, definable split between a 'disordered' brain and 'non-disordered' brain?

2. Do we know that anorexia nervosa is caused by a measurable malfunction of the brain (in the sense of a clear organic abnormality) as opposed to a variation of normal functioning?

I'd be really interested to know your views on this, if that's OK!

T said...

What fascinating posts everyone!

I think it's also important to realize that there may be a few components to this whole brain disorder thing. There's the initial genetic/environment component that means we end up with eating disorders, but there is also the changes to the brain that occur as the result of starvation which only amplify the original condition.

I have found a lot of comfort in the idea that AN is a brain disorder and I know a lot of girls in treatment who feel the same way. Recognizing the biological basis on EDs really helps to alleviate guilt for sufferers and their parents who often feel blamed.

Increasing our knowledge and pushing people who discuss EDs, either in private, in treatment or in the media, to include a conversation about biology can only help increase understanding and make for better treatment.

Unknown said...

Thank you, Carrie for this excellent post! As someone in recovery from AN, I strongly agree with everything that you said. I would also like to add a few things, and to respectfully respond to a few posts made on the board. (I'm really glad to see that this particular post created such a spirited discussion about such an important issue!).

In terms of eating disorders being biologically based brain diseases, I, like you Carrie, have also found a great deal of comfort and relief in finding this out. Because in knowing this information, the solution became clear: full nutrition. Full nutrition is medicine for someone with an eating disorder. Is it a magic cure? No, of course not. Will someone with AN become WR and overnight will all ED thoughts and desires to engage in symptoms go away? No. But full nutrition is a START. It gives the patient, whether AN or BN a fighting chance to face the thoughts, the desires, and everything else because when the person becomes stable medically and weight-wise, their mind is clear and rational for the first time, very often, in years. They have physical strength that they haven't had for a very, very long time. And because their mind is clear, this allows them to want to continue (sometimes, not always) to nourish themselves, because suddenly, they can SEE the future, they can see their way out of depression, anxiety, isolation, whereas they could not before. If they are not able to nourish themselves on their own, this is simply an indication that the person is not truly weight restored, or just that they need more time eating their meal plan with support and maintaing their weight restored weight as their brain heals. (cont below)

Unknown said...

Now, what I am going to say next is where I branch off a bit from the biological model just a bit. I know that individuals who advocate the brain disorder model generally feel that weight restoration, stabilization of the person's nutrition, and cessation of symptoms are what is necessary to restore health. They feel that any therapist who looks for underlying or roots causes of the ED is a T that also feels that finding these causes will ultimately be what stops the behaviors and is not worth his/her salt. I couldn't agree more. I have been treated by people like that, have sat in chairs for years looking for causes while I starved to death. I also feel that individuals should not begin therapy until they are either fully weight restored (with AN or BN) or until all b/p symptoms have stopped (with BN). While a person is fully entrenched in AN or BN, they aren't able to engage in T-they are too malnourished and/or medically unstable. However, and I do think that each person should be evaluated on a case by case basis, I do think that it is beneficial for the individual to do some, what I like to call "dot connecting", which IMO is very, very different from looking for root causes. The way I see it, because right now, I am at the "connecting the dots" stage, it is something you do because it allows you to take an aerial view of your life, if you will, to view it holistically and to become a wiser, stronger person who is better able to be compassionate to both herself and to others. It is also just generally an enlightening undertaking. It allows you to see where you came from, what got you to that point, and where you are going.

Cathy (UK), you stated:
As far as I can see, the only advantage of describing EDs (the subject discussed most frequently on this blog) as 'brain disorders' is that it negates any sense of guilt or blame - for anyone. That is to say that no-one need be blamed or need feel guilty, because the individual with the ED (supposedly) has a 'brain malfunction'. That might make sufferer or carer feel happier

I have to say, I respectfully view it very differently. In fact, I look at the situation much the way Charlotte views diabetes. I might have a genetic vulnerability to diabetes that may or may not manifest. However, if certain environmental stressors are in play (poor diet, no exercise, etc) it is much more likely to show up. Same with the ED. My own mother, in fact was extremely abusive of my weight growing up and I blamed her entirely-I completely adhered to the "root causes" model. Now I see that it simply isn't possibly. There are children from perfectly lovely families who develop AN and children from horrid families who are abusive about their weight who don't-they don't have that same genetic vulnerability. Dr. Julie O'Toole actually mentioned something on her blog on the Kartini Clinic website about two mother with munchausen by proxy who tried to induce AN in their daughters and were unable to because their daughters did not have the biological predispostion to the disease (thank goodness!).

With regard to your comment that medicalizing mental illness and how calling it a brain disorder might increase stigma-I just want to say-that might be true-BUT...I think that the only way to fight that stigma is to keep saying the truth, to not be ashamed and to fight, fight, fight-for better care for current sufferers, for early detection and prevention for future sufferers, and for investigation of treatment facilities that are, frankly, appalling, and IMO doing more harm than good. (Anyone see THIN?)

Ok, I am stepping off my soapbox because this post has become far too long. Thank you to anyone who has managed to reach the end! With that, I am off to prepare a lovely dinner :-)

Unknown said...

Stepping back on the soapbox for one more second :-)

Just one more comment re: whether or not EDs are, in fact anyone's fault (I personally do not believe that they are anyone's fault, and certainly not the sufferers), but, even if they were, let me put this out there:

Would it do any good to place blame?

If you place things within that model, what would putting blame on a suffering, tortured, patient, who is living with an ED demon in his/her head do? Would it help?

What would placing blame on a parent who, while possibly not perfect, while perhaps VERY not perfect do? Make the parent more hostile? Resentful of the ED'd child?

Blame = Shame

Its never a good idea.

Not healthy for the parents, and won't lead to recovery for the child.

Back off soapbox-thanks for reading :-)

Katie said...

Jamie, I think you've pretty much re-expressed our own views ;) as I explained to hm, I already do outreach work, explaining the biology of eating disorders to teenagers. I wasn't arguing that we shouldn't fight, I was arguing that we shouldn't go in all guns blazing because that turns people off - it's better to ease people in when trying to change their views, so they are more open to what you have to say. I think of my past ED as a biologically based mental illness - the phrasing of brain disorder doesn't appeal to me, but the ideas behind it are largely in line with my own thinking. It's just semantics.

Unknown said...

Katie-I think thats awesome and amazing that you do outreach work. I was in no way trying to attack you, please understand.

I do feel that the problem with easing people into the idea is that its almost like admitting that we're not that comfortable with it ourselves. I'm not saying that going in guns blazing is the answer, however, I don't think that tiptoeing around the issue and easing people in is either. That will take too long, and in the interim, too many sufferers will not be getting the proper care. Will some people be turned off initially? Yes, of course. But I think that this is an issue with a lot of causes seen throughout history-and sometimes hard choices have had to be made about when to speak up about what-and the people speaking up were not always saying things that were popular-but they were saying things that had to be said.

Cathy (UK) said...

@Jamie: Very briefly, not the least because I have been hugely 'gobby' already.... I don't dispute the biological basis of EDs whatsoever; I have a PhD in the Biomedical Sciences and understand the biochemistry and physiology of starvation very thoroughly. But: (1) I dislike the term 'disorder' in the context of the brain in certain mental illnesses - and (2) there is no clear scientific evidence that explains precisely what is happening in the brain in individuals with active EDs and a history of EDs as yet.

My primary concern relates to the potential for stigma and misunderstanding.

Unknown said...

Cathy, as a molecular biologist myself, I have no doubt from reading your posts that you have a thorough understanding of the biology and physiology of starvation.

However, when I responded to a comment that you had made, it had absolutely nothing to do with either of those things. You stated that "the only advantage of describing EDs as 'brain disorders' is that it negates any sense of guilt or blame - for anyone...that it might make the sufferer, or carer feel happier."

That is the quote that I was responding to. And in responding, it was not my aim to make you feel attacked or insulted. Just to provide another point of view.

The rest of my post was not responding to anything that you said.

Oh my. Things seem to have gotten a bit heated here....

hm said...

Cathy (UK)- I think I get what you are saying. Is it a "brain disorder"? If so, what's the concrete proof of that? You can see the difference in insulin in a diabetic. But disordered thoughts don't show up on a brain scan, blood test, or an x-ray.

It's much simpler to just say "eating disorder," because those of us who struggle don't eat the same way "normal" people do. But I can honestly say it's not that I don't know how to eat- it's not like I feel like I need to eat while standing on my head, or using my toes instead of my fingers, or smearing food all over my face (as one article suggested with its photos...). It's that my thoughts towards eating are off. My thoughts towards food, weight, calories- all off, apparently. Thoughts towards many other things are quite on the spot.

"Brain disorder" fits for me. It helps me to categorize my thinking, into rational thoughts and disordered thoughts. I am learning how to strengthen the rational side so that it can recognize disordered thinking and then keep the disordered side in check. But in order to recognize the difference, I need to acknowledge both! Yes, I have a good brain, a smart brain- and yes, I have a disordered brain.

hm said...

Jamie- It's not "heated"- it's "spirited." :)

I love all of these different viewpoints. Each person with their particular thoughts adds more color to the canvas.

Unknown said...
This comment has been removed by the author.
Unknown said...

Very true hm, very true! :-)

A:) said...

I think we are getting confused over terminology.

No one is saying that EDs do not have a biological basis or that they are not strongly inherited, improved by stable nutrition, etc -- just that there is no evidence to suggest that it is a "disorder" of the brain.

As Cathy so aptly stated (I agree with everything you say Cathy :P) there is really no evidence that EDs are not borne of sub-optimal functioning in the brain ( perhaps as a result of specific personality traits, genetic predispositions toward depression, anxiety, rigidy) -- in fact all the evidence supports this PREDISPOSITION.

This is EXTREMELY different than a disorder which implies structural or functional impairment/deficit on a gross level.

In Alheizmers disease we can visualize beta amyloid plaques and tangles and watch the development of the disease (at least in animal models). In Parkinson's disease we can visualize that destruction of the substantia nigra and we have a working model of how this affects the basal ganglia. Similarly, this can also be done in Huntingtons chorea, etc.

My point is that these are disorders of the brain where something goes seriously wrong -- whether it is a mutated protein, gross cell death, etc and there are behavioural consequences.

EDs are less concrete. The genetic/biological evidence that has been found suggest slight deviations from the normal population the SUBTLY influence functioning. However, some of these SAME genetic polymorphisms and differences have been found ACROSS mental illness and in non-ill family members. So can we REALLY point to biological evidence that proves a brain disorder?

I think it is more likely that EDs are a biologically based mental illness. They have a biological basis, but their presence does not guarantee the disorder.

It is also important to note that there is less genetic evidence for BN and BED (at least at the moment) than AN. So we cannot lump all EDs together.


Rose said...

i get frustrated at the notion that there is no biological basis for BN and BED like there is for AN. it pisses me off, to be honest. i'm not trying to start a fight. i'm just expressing my feeling on the matter.
i also really like Dr. Ravins definition of a brain disorder. i htink it makes sense and gives "credit" to those of us with "mental illness", a term which is so often misunderstood, even by treaters themselves.

Cathy (UK) said...

@Jamie - not 'heated' whatsoever; merely a debate - and perhaps me being a little over-precise and literal as usual..

@A:) - you describe perfectly the point I have been endeavouring to get across :) How can we state that certain mental illnesses stem from a genetically-based (primary) 'brain' disorder when this is merely hypothetical?

There is no evidence of 'faulty' genetics in AN when compared to (e.g.) cystic fibrosis. The assumed genetic basis is derived from data from twin and family studies. But unless identical twins are reared apart, it's near impossible to clearly attribute AN to inheritance because of environmental influences. The genetic data also suggest that relatives of AN more frequently have (e.g.) depression, anxiety and ASD. The genetic basis most likely relates to inherited traits that may express in a variety of forms that influence psychological functioning or wellbeing; not a specific and isolated genetic condition.

What we do know, however, is that semi-starvation has profound effects on the functioning of all tissues and that the brain is especially sensitive to glucose deprivation on account of an inability to metabolise fat. The changes in thinking that occur in AN may merely be normal adaptations to starvation. Blood levels of many hormones and nutrients alter radically during chronic semi-starvation and these feedback to the brain. This is all NORMAL adaptive functioning. It is not a brain disorder. Starvation may 'strengthen' pre-existing traits so as to lock the person in the illness until their systemic physiology and metabolism are normalised.

Charlotte UK said...

Ok I admit that I am way out of my league on the sciency stuff here but here goes my non-clinical observations.

First Rose, I would like to reassure you that I view all eds as a sign/symptom of a sick brain. Anorexia tends to get used as a generic term sometimes.

My theory is faulty wiring - I have been doing a lot of watching of Dr Ramachandran on YouTube and his TED talks and it makes sense to me. I think that part of the treatment of an ed is the "normalising" of eating patterns, as well as weight restoration. I think neuroplasticity has a big part to play alongside desensitisation. I put my daughter's anorexia on the OCD scale, so therefore I feel that she had a disorder. However I am convinced that this disorder sprang from a diseased brain but, in the end, it is just words to me.

Whether you describe the condition as a brain disease, or damage, or disorder, or condition is all immaterial to me, as a parent and a carer, because I am not a scientist or intellectually up to the more technical points being made here. However, I do loathe the stigma surrounding the whole area.

On a personal level, I would much rather be labelled with a disease, a relatively blameless diagnosis, than a disorder, which, to me, has the connotations of it being my fault.

Katie said...

Jamie - it's quite alright, we like debating! Hehe. I think maybe you are misunderstanding my approach to my outreach. I certainly don't tiptoe around the idea of biology in my talks to teenagers (who are all college students by the way, not people with eating disorders, although obviously some will have problems in any class), I make sure by the end of the session that they understand the effects of starvation and the research suggesting a biological basis for AN. I just don't like the term brain disorder, because as A and Cathy pointed out, that implies something along the lines of Huntingtons or Parkinsons etc, and there's no proof (yet) that anorexia is that obviously and physically located in the brain. I called my anorexia an illness - I clearly had all the traits associated with future AN development in childhood, then during each of my relapses some trauma or stress made me lose my appetite, undereat and get locked into that pattern of behaviours by the biological effects of starvation. It makes sense to me to think of the biology behind anorexia in two parts: first of all the group of (genetically determined) traits which predispose someone to the disorder, and secondly what happens to a person (biologically) when they begin to restrict their intake. It's a bit different from believing that anorexia is a specific disease process that is triggered by restriction. I was a physics rather than biology student, so Cathy and A are much better explaining that than I am.

This is purely conjecture, but I wonder if we are discussing different illnesses. There are huge differences among people with anorexia, bulimia and BED. Some people at low weights got there by bingeing and purging, some just restrict, some have body dysmorphia, some feel it's more akin to OCD...anorexic and bulimic seem to be umbrella terms for a very diverse set of people. The only real similarity I've found between myself and all the other people with eating disorders I know is that everyone is subject to the biological effects of restriction/malnutrition. Other than that, you could barely say that any two of them had the same illness.

Cathy (UK) said...

@Katie - I totally agree with you about the variabilty of expression and heterogeneity of EDs - and even subtypes such as AN.

Another point is that many people with EDs have co-morbid diagnoses (e.g. OCD, ASD, BPD, GAD). Most clinicians view co-morbidity as the norm rather than the exception.

I only read 2-3 ED blogs on a regular basis nowadays, but in the past I followed quite a few. I did (and do) wonder, when some people discuss what they call their ED, whether what they are sometimes describing are characteristics of a co-morbid condition. There simply isn't a standard medical model to describe even AN. That is why tailor-made treatment has helped me.

Cathy (UK) said...

@Jamie - don't worry that I felt attacked or insulted. I don't see debating on this blog as personal whatsoever. We are just discussing science, evidence and theories. I only mentioned my understanding of the science of starvation to emphasise the point that on the basis of knowing the science I wholly believe that AN certainly IS driven to a large extent by starvation and does therefore have a biological basis. I had low weight restricting AN for many years and I personally witnessed how re-feeding ameliorated many symptoms of my AN. But re-feeding didn't cure my anxiety or OCD. Therapy has helped with these factors that played into my AN.

Katie said...

Carrie - I just wanted to say, I hope you're okay with what happened to your comments section here, and thank you!

Thanks to everyone else to commented too, I found it so helpful in clarifying my thoughts. So much so that I couldn't resist waffling on a bit more on my own blog. My poor readers...

hm said...

Katie- I read your blog entry- It was great! This discussion has helped me much also. Bouncing ideas around with other recovery-minded people is a good and healthy thing.

In the end, I'm still partial to "disorder" over "illness" in my process towards understanding myself- as a germaphobe, "illness" doesn't sit well with me- as a lover of math and all things orderly, "disorder" works for me because it says I've got something I can WORK with- I can line this thing up and try to re-order the things in my head! I can try to make order out of this frustrating disorder- and that's what I'm trying to do. :)

Anonymous said...

eating disorders are 'simply' genetic HPA axis misfirings present all through life, but adapted by ones environment when malnutrition is triggered, be it a diet or just bad food choices...

fixing eating disorders means fixing malnutrition.

you can 'argue' its a brain disease or disorder vs not being, but the brain doesnt change until the genetic switch is fluipped and that doesnt occur until malnutrition is present. from there, recovering from malnutrition will lead one to develop and repair habits that have been 'tag alongs' in the ED like rituals, obsessions, and sociability

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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