"brain-based" diseases - a new name for illnesses including BP

I agree with Kay Jamison that Bipolar is both a euphemism and a misnomer. At least when you have Bipolar I. So, like her, I prefer the old name, Manic Depressive Psychosis, because it reflects reality. Likewise, a manic attack is just that to me - an attack; it is a not a sterile "episode" or "mood episode". So I prefer to call a spade a spade.

On the other hand, there is still stigma around us, and using words that are precise yet non-scary and non-judgmental is kinda nice. So when I happened upon the newest coinage, "brain-based diseases", to cover BP, schizophrenia, etc., I liked it. It reflects the biological origin, the locus of the problem, and passes no judgment at all. Not "mental illness" (overloaded with judgment and unclear), not "psychiatric disease" (scary), but simply "brain-based".

I like that.

I don't like that. It implies our brains are broken and we have no control over ourselves.

And since... there is no definite test for that... why this name?

(and no, I don't consider myself "ill". I have scars on my soul...)

Natalya,

Yes, I agree with you!

I also have multiple sclerosis and the damage from MS is in the brain (multiple attacks by the immune system) causing lesions and plaques.
God, my poor brain!

"scars on my soul" - I like that, it is poetic.

The test - hopefully in our lifetime there will be a test, don't you think?

Well, yeah, kinda. Do you understand that every single one of the former terms were coined for the same express purpose as appears to motivate you: to avoid stigma and invent a novel term that was completely neutral. If you succeed in having your words replace prior terminology they will do so for a decade or so and by that time will have accumulated the same pejorative connotations that attach to current terms. Is it worth it? Isn't there some benefit to simply challenging the concepts behind the stigma rather than in avoiding it? Myself, I kinda admire the people who've adopted the group name of "lunatic fringe."

MAD PRIDE!



(also Shakespeare said something about rose by any other name... in the end it is how it impacts you. If you call broken bone by some lite-name, it will not make it any less painful. And the stigma... it is often us who make it worse by the way we act about it).

Ygrec23,

Ahhhh, very wise! Also, I'm listening to "lunatic fringe" right now...your post reminded me the song even existed...LOL

i have long advocated for the use of a more accurate term, "brain chemistry disorder", for those of us who have that... i cannot find a Mental, anywhere, healthy or ill, but having had a severe brain injury, i know what it does better than most. brain disorders of all kinds need to be mainstreamed and de-tox'd, socially and medically. as for having a soul, i can't prove or disprove that either, but behavior is easily documented. most importantly, as Ygrec noted, as long as the condition is stigmatized, what does it matter what it's called ? i personally love to declare that i have ABCD, acquired brain chemistry disorder (not to be mistaken with developed brain disorders, or traumatic brain injuries). good discussion,, Gus

I don't like the term "disease" at all. I always imagine a disease to be eating away at something, and although I can concede that I feel like this 'thing' in my head *is* eating away at my sanity sometimes, there's something about the term "disease" that sounds almost unclean.

I always preferred the term "bipolar" to "manic depressive". To me it sounds less frightening to an "outsider". In my mind, "manic depressive" indicates that we are always out of control, crazy people. Although I can see Jamison's point that we don't simply experience two poles of mood. "Bipolar spectrum disorder" is a good one as it makes it clear that it's possible to experience a wide range of moods. But then again I don't like the connotations of "disorder"!

It's difficult, isn't it?! There is no one term that will fit everyone, which I guess is the problem with illnesses of the mind. Our minds are all different.

Disorder or disease...does it really matter?...That's just "tit for tat" at this point I think.

"Disease" is a borrowed term. Borrowed from physical medicine. It's only a metaphor. As is "illness." None of us have the slightest idea, as of yet, whether mental "problems" or "difficulties" really are "diseases" or "illnesses." They may well be! But no one as of now has any idea whether it's so or not. I'd be more in favor of the most general possible terms: "problem" or "difficulty." The people who began using those borrowed terms were in all good faith trying to IMPROVE the status of mental difficulties, by no means to stigmatize them.

Who cares whether it's more or less frightening to outsiders? It simply has to be respected as a real, not an assumed, difficulty. The heck with whether it's frightening! All this terminology back and forth is depressing in itself! The conduct of crazy people (yes, CRAZY people) will ALWAYS freak out bystanders! The hell with bystanders! What we need are budgetary appropriations for research, social appropriations for care and medication, and respect for the pain with which we deal every day! They wouldn't DARE do this to cancer patients! To cardiovascular illnesses! And we want to get up there with those favored disease categories, whether we're connected with diseases or not! Take care.

[/quote] What we need are budgetary appropriations for research, social appropriations for care and medication, and respect for the pain with which we deal every day! They wouldn't DARE do this to cancer patients! To cardiovascular illnesses! And we want to get up there with those favored disease categories, whether we're connected with diseases or not! Take care. [/quote]

I agree.

And the only way that will happen is to change the nomenclature to something like "brain-based disease". That's the whole basis for mental health insurance parity laws. Even insurers who are required to offer comparable insurance for 'mental disorders' as they do 'physical disorders' only have to do it for those illnesses determined by some doughnut-stuffed committee to be brain-based. The sooner we push to be on the same playing field as things like epilepsy, the sooner we will be given equal care, at least from a financial standpoint. Granted, a rose is still a rose, and it will take people longer to change their perceptions of people with these 'brain-based diseases". But which would you prefer to have in your yard: a pigeon or a rock dove? Same bird, different connotation.

You're in all probability right! I'm sure you know more on this subject than I do! But whatever it takes, whatever it takes! We have to do it. All, together. All together! Is NAMI solidly working in this direction? Is anyone else? The hell with semantics! Let's do what we have to do!

Yes, your poor brain!!

I agree. It is a brain trouble. It's not a personality disorder or flaw. I don't get as many psych appts as I need and yet unlimited when it's my gp and asthma or strep throat etc.

I had no idea there are parity laws! My insurance (a OK-ish insurance that a small company in the US can buy for its employees) offers outstanding benefits for preventive care - I did not pay a penny for digital mammography, an expensive procedure, and immunizations are free - and pays OK for non-preventive medical care in "non-mental" fields. Mental health? First, the disease has to be considered "serious" to be covered; luckily, BP is (I do not know their criteria, probably they believe that Axis I is serious although I hear that there is advocacy to put borderline on the map). If it is an in-network provider, very good coverage but there are virtually no providers who would take this plan because it pays measly amounts to THEM. I have found one such provider from a long list, no one else was interested. But OK, coverage is great, but there are 20 (standard in the US) visits per year, and that includes COMBINED pdoc, tdoc, and hospitalization. I need to see pdoc frequently, sometimes weekly, so I end up paying the tdoc (who is non in-network anyway) out-of-pocket because I save my days for the more expensive pdoc. If the local research hospital's special BP clinic decides to accept me, I will have virtually no coverage because they are out-of-network, and very expensive at that. This is all a standard California policy, so where is parity? In states like Massachussets? And you are right, we should be like Epilepsy, many of us even take anticonvulsant drugs, so what is the difference?

Parity laws vary by state, unfortunately. Having limits on the number of visits is very frustrating and I've also had to play the 'pay out of pocket' game before. I also saw my pdoc for therapy twice a month for a while, combining the pdoc/tdoc functions. Your 20 visits includes hospital stays?? Now that's going too far. You could use up 2/3 of your visits with one inpatient stay! Luckily, these laws are supposed to improve in 2014 when "Obamacare" goes into full effect and everyone will have to give mental health diagnoses full parity. Here's a link to a list of each state's parity status: http://www.ncsl.org/default.aspx?tabid=14352
Unfortunately, California isn't quite there yet, so it sounds like you've got the best coverage that's available there so far.

Natalya, I like "brain-based". There's so much to agree with here in this thread (though divergent. .. such is the nature of complex things.) I don't think it says that I have no control over my brain, just that, yes, this is real, and there's much I don't have control over. There are ways to help modulate, but not eliminate. It's not just being "lazy", or that I choose extremes that make me non-functional or out-of-control. I can't just "get over it". It is a way of conveying that, yes, the brain is part of the body (um, really? lol) and that not everything regarding the brain is somehow "imaginary", or that it can simply be talked out.

(Parity is a good point in all this, sorry not to be able to speak to it, having no insurance.)

Well said! I'd just like to add that disregard by some is quite chilling when you consider that for a few of us, Bipolar can end up being a terminal illness.

speaking of name, I never liked the sound of "bipolar". Reminds me of Cold War.

(but maybe I am assuredly self-destructive).


I can understand the renaming for insurance reasons... I guess it is aspect I overlook as non-consumer of the system. I would just prefer if we finally started accepting broken psyche can be as serious as broken bones or organs.... not necessarily broken brain (no reliable test so far and there are existential/environmental/psychologoical/spiritual aspects to it... if we move to "brain disease", it will push the strictly medical model, which is insuffescient).

I think the folks out there fighting equality of mental illness insurance coverage care figs about what we call it. They just don't want to have to PAY. For anything else.

Look, they've got just so much, total. Not a whole lot more will be coming in, compared with what will go out. So if more has to be covered, where will all those bucks come from?

Slush funds (now happily anyone's playfund)?
Some CEO's bonus?

Think about it folks. I don't think semantics have a thing to do with it. Just greed. If they were paying for mental illness now, they wouldn't want to pay for physical stuff.

Greed. They understand. They just don't care about any of it as much as they do about having money & the power over it.


Yeah, brain-based does seem more accurate to me, PR-speaking.

I stay to myself tho, pretty much. If I can help you, I'll do my best. I'm pretty much over causes, however. Let the kids battle it out, whoever cares too.

Insurance companies don't only care about money. They still pretty much pay $100-200 per baby times 1.2 million per year to cut skin off baby penises - and that has no medical benefits- outside of emotional self-preservation of the insurance and drs boards.

/rant off

Yes, and on a much more important (in terms of $$$ it could save) note they still do not wholeheartedly embrace the midwifery model of care for delivering of said babies (and their female counterparts).

A related thought. My friend passed away from Lung Cancer. She never smoked. In the last few years of her life she fought vehemently to bring attention and research money to the disease. From her I learned (I am not checking the numbers now, so please forgive lack of precision) that breast cancer gets something like an order of magnitude more research funding than lung cancer, even though lung cancer is a very serious killer. The explanation was that lung cancer is still associated in people's minds with smoking, even though the stats show that HALF of sufferers did not smoke in their lives. Associating the disease the smoking puts the onus on the sufferer so the public thinks that the sufferers brought this disease onto themselves, and ls much less likely to open its pockets than for breast cancer. Mind you, at some point in Russia, the Orthodox Christian Church propagated the idea that breast cancer was caused by past abortions, a "hypothesis" that in a country that used to not have reliable contraception (and thus all women had abortions) was hard to refute for a poor, scared, lay woman sufferer not well versed in statistical modeling and epidemiological studies. So granted, even breast cancer can be made to appear an illness that the sufferer "deserved". But luckily not in the US. So we have great coverage. As I said earlier, my insurance that pays pennies for mental covered 100% of my digital mammogram (~$600). In California, even illegal immigrant women can get coverage for breast and other gynecological cancers. So the public's appreciation of the suffering this illness brings and of the "innocence" of the sufferers finally caused very significant monetary outlays, even despite of greed.

The leukemia and lymphoma society which raises money for obviously innocent children suffering from blood cancers is probably the top participant in various charity marathons, triathlons and other such events.

So something tells me it is a lot about innocence.

Now enter bipolar and other illnesses. Depressed? "Get over it!" Or, "everyone is depressed in this economy anyway, we are all in the same boat." Hallucinating? "Must have been on illicit drugs." Delusional? "this is scary and we do not want to think about it". And the list goes on. You see how vastly different it is from breast cancer so far?

As was aptly alluded to in recent posts, this illness for some of us just might become a terminal illness. And the advances in treatment, mostly in the form of new antipsychotics' getting approval for bipolar treatment, bring with them weight gain, blood sugar problems and basically the whole metabolic syndrome (that at least the public should understand, because the public supports diabetes research and does not chastise diabetics for possible lack of exercise) which eventually may lead to a terminal illness of a completely different sort. So it is a serious thing. And I just love it how doctors compare BP with diabetes in that it cannot be cured but can be managed whilst I cannot get an insurance coverage to go see a registered dietitian to speak about reducing medication-induced weight gain, and all sorts of nutritional education coverage is available for true diabetics.