Thursday, April 24, 2008

The Disease is Not the Person

I was reading about mania and hypomania today, hoping to answer naturalgal's question about why people do things that are against their moral code when they're manic. I couldn't find the answer. However, I do want to share a most interesting observation on bipolar disorder from E. Torrey Fuller, M.D., co-author of Surviving Manic Depression: A Manual on Bipolar Disorder for Patients, Families, and Providers.
"It should be clearly stated, however, that the disease is not the person. The symptoms of manic-depressive illness are merely symptoms and are distinct from the person's underlying personality. Manic depression is an equal opportunity disease: It may affect those whose underlying personality is shy or outgoing, altruistic or narcissistic, responsible or spoiled, kind or cruel.

The symptoms of mania and depression then interdigitate with the person's underlying personality to create a unique medley that differs not only from person to person but even from day to day within a single person as the disease process evolves. It is this interaction of disease symptoms with underlying personality that makes manic-depressive illness so difficult to comprehend for most people."
While Dr. Fuller is one of the foremost researchers of bipolar mood disorder, it is this kind of a statement that I completely disagree with. When I read his book years ago, and he is a true advocate for the mentally ill, I felt there was no hope for me to become well.

In the intervening years, I've totally changed my mind, and it's one of the reasons why I no longer read books on bipolar disorder. If I truly believed that the strength of my personality couldn't affect the outcome of this illness, I'd be devastated. If I believed that my illness would change from day to day independent of my behavior, my resolve in seeking to control it, and my willingness to utilize a wide range of wellness activities to feel better--it would mean that I was powerless to heal myself.

While Dr. Fuller has done so much for so many, his mindset about bipolar mood disorder is in total opposition to my own. I've asked this question before and I will ask it again.
Why is it that some of the foremost oncologists who deal with people who have terminal cancer believe their patient's attitudes can affect the outcome of their illness, but none of the foremost psychiatrists who deal with bipolar disorder feel similarly?

16 comments:

Meredith said...

Well, as you will read, I completely am in agreement with you here. If I weren't as strong-willed and stubborn and yes, optimistic, I've no doubt that I'd be in a far different position. But, as my beloved new-old boyfriend (who is a type I diabetic) told me when we became close again in February, "You're a fighter." And then I told him to never, under any circumstances, read any books on bipolar disorder. :)

Duane Sherry said...

Susan,

I think that Dr. Torrey may at one time (or perhaps for brief periods of time along the way) had the best interests of those who suffer with these symptoms at heart.

His more recent efforts with his Treatment Advocacy Center however, are nothing short of tyrranical.

Once we decide as a community that a segment of the population is in any way 'less' than the general population at large, all bets are off with what happens next.

We have watched the constitution in this nation become circumvented by the likes of Dr. Torrey, and we shake our heads in disbelief and clench our fists in anger, and sweat in fear - for those who are forced to take large amounts of mind-altering drugs, and are incarcerated against their will.

We say that all people are due civil rights, and that NAMI and the TAC have no authority to insist on 'medical compliance' - our own healthcare is our business.

And it certainly is - as long as we continue to take responsibility for our own actions. The moment we stop, is the exact moment that we lose our rights.

If a person is unwilling to do so, then they will be seen as 'unable' to do so, and they will quickly be made 'able' by persuasion, coercion or legal force.

I am not naive enough to believe that those in power will take only the small amount of authority needed to make sure those who momentarily lose control are empathetically guided toward regaining control.

This is not the nature of those who seek power. Power is an aphrodisiac like no other - it runs circles around the love of money.

I am also not unaware of the s ymptoms of this 'illness', and the 'manic' episodes involved. I will even admit that there are times when these symptoms can be more challenging than others will ever realize.

I believe that the psych drugs themselves, along with sudden withdrawal and other factors that are very physical in nature can often result in 'manic' episodes.

But, if we continue to say our behavior is due to our illness, then we will be treated as those who cannot control their own behavior.

If we continue to tell others we are not responsible for the things we say and do, there will be others who decide what things we should not be allowed to say or do.

Power is an aphrodisiac - addictive, and insatiable.....first it's the loss of the right to work in a certain field, and next it's the right to vote, or raise children...

As long as those in power can paint a picture of a dangerous group - the group itself is seen as 'less' than the general population, and more importantly, one that needs to be 'controlled'.

And nothing helps paint this picture better than those in the group telling the world they are 'not responsible' for their own behavior.

Lastly, I believe that there are reasons for some of these symptoms that we have yet to discover, and we are not always to blame for how we feel.

I also believe that most mania is a physically-based phenomenon - and even the most full-blown episodes are like dream-like states - probably due to loss of REM sleep, and induced quite often by the psych drugs themselves or their withdrawal (ironically), and a host of other reasons.

Also, I have empathy for anyone who has gone through such a phenomenon. Those I've met remained harmless and non-violent during these episodes, and described them almost as spiritual experiences - and they may be.

I am referring in this comment to the day-to-day activities of life, and the need to err on the side o f freedom - because with freedom comes the need to claim responsibility for the way we lead our lives.

I make plenty of mistakes, and say and do things I regret, but I choose to err on the side of being free, and taking full responsibility for my actions, and make ammends to others and to myself for my many character faults.

Also, I think it behooves each of us to spend some time telling ourselves that we are okay - in fact, we have some pretty nice qualities and do plenty of things right - including, I think, as a group, a great deal of empathy for others, and some depth of character - in an all-too shalow world.

I remain a work in progress, with lots of room for growth, but I won't surrender my freedom to Dr. Torrey and the boys at TAC by telling others I'm not responsible for my own behavior.

Yours in liberty,
Duane

Crazazy said...

I don't read that as meaning that an individual's personality can have no influence over the disease. I think he's just saying that the behaviors exhibited as a result of the disease, like the harmful things we can do during a manic or hypomanic episode, aren't because the person is bad but because the disease is influencing behavior.

A friend who's a recovering alcoholic has a note taped to his mirror reminding him that he's "sick and getting better, not bad and getting good," and I've kind of adopted that myself. It's a reminder that while I've done some harmful things to myself, they're not because I'm a bad person.

I absolutely believe that the strength of my personality is helping me through this, just like the strength of a cancer patient's personality can help them. But a cancer patient can't "personality" her disease away, and neither can I. It's my own personal strength that combines with the help I get to make my disease manageable.

Bipolar Wellness Writer said...

Dear Meredith,
I completely agree with you and with your advice for your boyfriend. As a professional researcher and writer, my first inclination after my diagnosis was to read everything I could find on this illness. It was the biggest mistake of my life.

When I became so very ill, I felt that I was not only struggling to achieve wellness, but fighting to find a psychiatrist who could help me achieve my goal.

I have made progress towards healing; I have given up on my search to find a psychiatrist who can truly provide the support I am seeking.

Susan

Bipolar Wellness Writer said...

Dear Duane,
Your erudition, passion, and thoughtfulness on this topic should give us all pause to think. In response, I don't know what I can possibly say that you haven't! All I can do is thank you for taking the time to write such an extraordinary piece!

Susan

Bipolar Wellness Writer said...

Dear Crazazy,
You certainly have a different take on this--and one that is well worth considering.

Since most of my hypomanic behavior was medication-induced, I don't know what it's like to feel like the illness is the causal factor.

But for those whose symptoms are biochemical, what you're saying should certainly make them feel better.

Still, I believe we may agree that the only way to make this illness manageable is to utilize the resources we have to fight it!

Susan

naturalgal said...

Duane's comment was excellent.

But, I am writing my blog without too much identifying information. Why? for two reasons: One, I don't want my everyday community to know I have a bipolar diagnosis.

AND just as important. I am so ashamed of crazy things I did when I was in a "manic" episode. Was I basically just an a__h___?

I don't want anyone to find out the really crazy, immoral things I did.

My husband once said to me during an manic episode: "Sick or not, you know the difference between right and wrong; and what you did was WRONG."

And so I struggle with this daily. It would be so much more easy to say, "I was sick." Than to say, "I was an immoral jerk."

marja said...

If I'm understanding Dr. Fuller correctly, and I'm not sure I am, I think he's right. When I first got sick, manic and psychotic, people would not have guessed that I was actually a very shy, reserved person. But also I think a person with a different personality might have been affected in a different way.

My history is different than yours, Susan. I have Bipolar Type 1 disorder and it's without meds that these symptoms come upon me. My meds prevent me from going there (manic and psychotic).

I also have to say, though, that I'm naturally a very positive person, a fighter, someone who wants to overcome. That's my personality. This has helped me deal with the symptoms, by taking the meds the doctor prescribes to keep me well. Also I've found many coping techniques that I work very hard to employ when I find myself going too far up or too far down. I seem to not be able to do much about the mania, but I've learned to fight the depression somewhat.

I know other bipolar type 1's who don't have that positive personality and who are not surviving in the same way I am - even with the meds. Their less personality keeps them from doing as much as they could do for themselves.

Bipolar Wellness Writer said...

Dear Naturalgal,
Thanks for your honesty. I will continue to try and find how the specific reasons why someone's actions might be different than their moral values during a "mania." We all know what it's like to feel embarrassed by some of the things we've done during manias or hypomanias. I appreciate your candor!

Susan

Duane Sherry said...

Naturalgal,

I have come to believe that recovery is as simple as mind/body/spirit.

Not easy by any means, but not always as complicated as we make it.

On the mind-side of things, we are what we think....

I remember a guy tell me once that our thoughts are like birds that land on a telephone wire. We are not always responsible for where they land, but we can scare them off - pretty simple - hard as hell - difficult, but simple.

On the body-side, we are what we eat.....

Again, simple - but full of temptations - billboard signs, magazine advertisements, fast food places, and restaurants with nachos.

On the spirit side, we are as we forgive, and allow to love.....

Letting go - of our fears and axieties, of our past failures, of all the mistakes we've made - no matter how large....asking whatever we conceive as 'God' - to humbly forgive us, and then taking the next step - one that requires a complete surrender of our own arrogance and false pride - a complete surrender of it - forgiving ourselves.

I have light-years to go, but it is very simple.

If you get all this down, and become perfect with any/and all of it - let the rest of know how you did it.

I'll bring a notepad and pen.....

Duane

Bipolar Wellness Writer said...

Dear Duane,
I'll let Naturalgal respond to your comment. Thanks again for sharing your insight with me and my readers!

Susan

Bipolar Wellness Writer said...

Marja,
It's difficult to tell how many people are like you, and how many are like me. I once read that 37 percent of the bipolar population switched from unipolar depression to bipolar disorder after taking antidepressants.

However, we certainly agree that a positive outlook makes all the difference.

Susan

Paula Joy said...

I've been thinking about this since yesteday, and all I get from his quote is that bipolar is different for everyone. No two people's personalities are the same, therefore the disorder is not the same for any 2 people. Bipolar affects any kind of people, but it is up to us, I think, how we are going to handle that. If your personality is to fight, then fight, and it will benefit you.

I can't say how it affects mania, because I've never gone through that.

I'd encourage you by saying that my bipolar disorder is unique to me, as yours is to you. God created us all differently, right down to the gene that influences bipolar. I take comfort in that fact. The strong personality that God gave me is what's going to help me in dealing with this disorder. That, and His strength.
Remember, He'll never give us more than we can handle. That's a great promise.

Bipolar Wellness Writer said...

Dear Paula,
Thanks for your comment. I has prompted me to think more about this entire discussion.

In my opinion, one of my problems with Fuller's point of view is that if there is no commonality between people's experience, then each person must handle her (his) illness in her own way.

But I believe there is a commonality, and there could be skills-based programs and services to help people. Since I think this is a very important topic, I'll write about it next week.

Susan

Susan

Paula Joy said...

I agree with you there! I think the foundation is the same, and the house is different. I look forward to developing this next week!!

Bipolar Wellness Writer said...

Dear Paula,
Nicely said! I'm going outside to work on the "foundation of my house" right now! Just kidding; but I've been re-cementing a retaining wall and the fireplace!

Susan