Challenging the premise of remission as the end goal of treatment.
I wrote an article some time ago that I deviously titled “Why I Am Against Bipolar Meds” because I wanted to attract and call out both extremes in the debate. I argued for a moderate stance and we had a good discussion with all points of view respectfully considered.
My friend Dr. Nassir Ghaemi wrote an article recently in response and clarified some important points. Dr Ghaemi is the Director of the Mood Disorders Program at Tufts Medical Center in Boston and is familiar with my work; he quoted some of it in his recent book, “A First-Rate Madness: Uncovering the Links Between Leadership and Mental Illness.” The discussion from his article went further into the med controversy, but also veered into new territory that I would like to address: My opposition to remission as the end goal of treatment.
One particular reply from Dr. Ghaemi gets to the crux of my issue; “In a substantial minority of people with bipolar disorder, about one-third, lithium produces complete remission of all symptoms. They never have another bipolar episode, and sometimes symptom, the rest of their lives. My point is, though, that even with full remission of all symptoms, people often need to make other efforts to get to functional recovery in life, repairing relationships and resuming work or other activities that they had not been able to complete in the past due to the interference of bipolar symptoms.”
As I am familiar with his work, I understand the point of view, but am concerned that some might misinterpret this to mean something different from what I believe he intends. Such a view is certainly not compatible with the premise of “A First Rate Madness,” so I am pretty sure Dr. Ghaemi does not mean what it may sound like to some. I am hoping this article will help clarify it and Dr. Ghaemi can weigh in on the discussion if I mistake any of his points.
In researching for this discussion I turned to the writings of my friend and sometimes mentor, Ronald W. Pies, MD, who shares duties with Dr. Ghaemi on the editorial board of Psychiatric Times. He has written some of my favorite articles and I will quote a few of them here. My comments are not meant to be an attack on either of their points of view, but to play off of points that resonate with my own.
Dr. Pies argues in “Psychiatry and the Myth of ‘Medicalization‘” that “So long as the patient is experiencing a substantial or enduring state of suffering and incapacity, the patient has disease (dis-ease).” That is a definition of disease, disorder, or illness I can fully agree with as I expect does Dr. Ghaemi. That being the case, I have no issue with Dr. Ghaemi’s reply to a comment by saying, “Bipolar disorder is an example of perhaps the psychiatric condition that is most clearly a medical disease, and which best responds to the right medications.” It is a disease when there is suffering and/or incapacitation, and medicine has an effect on removing the dis-ease.
The issue for me is the assumption that the disease includes the “symptoms” that are not in disorder. Dr Pies, in “Context Does Not Determine ‘Disorderness’ or Normality,” argues that panic attacks are still an incapacitation whether triggered by hanging from a cliff by your fingers or in a benign context. He says, “To be sure, not all pathological or disordered states constitute clinical disease. In our ordinary language, we usually don’t apply the term “disease” to states of suffering and incapacity that are related to a visible wound or injury, such as a knife wound. Nor do we usually apply the term “disease” to suffering and incapacity that is inflicted upon someone by external malefactors, such as terrorists or kidnappers. So, in this very limited sense, context does play some role in how we use the term “disease” in our ordinary language.” He later asserts that, “Context helps explain pathology—it does not annul it.”
It is in this sense that I need to point out the difference between Bipolar IN Order and Bipolar Disorder. In both cases, there is clear indication of high or low states, but the bipolar condition is the context, not the disorder itself. In the case of Bipolar Disorder there is suffering and/or incapacitation, but with Bipolar IN Order there is not. When we lump all of the elements of the experience into a single bucket of “symptoms” we end up making a major mistake. We see disease where no suffering or incapacitation exists. And that is why I am against remission/recovery as the end goal of treatment. They throw the baby out with the bath water; the baby that Dr Ghaemi talks about in “First Rate Madness” and I experience daily: non-disordered aspects of the states that give advantages to us.
The difference between what Dr Pies described and what I am describing is the source of the context. While he is describing sources outside of ourselves, depression and bipolar create a context that is internal. While we do not see the external context as the disorder, we do tend to look at the internal context as part and parcel of the disease. Being depressed or manic helps explain the pathology in those who are not IN Order, but is not the disorder itself.
This mistake is codified into the very bible of Psychiatry, otherwise known as the DSM. If you look up depression, for example, DSM-IV says the symptoms include “Persistent sad, anxious, or ’empty’ mood; Feelings of hopelessness, pessimism; Feelings of guilt, worthlessness, helplessness; Loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex; Decreased energy, fatigue, being “slowed down”; Difficulty concentrating, remembering, or making decisions; Insomnia, early-morning awakening, or oversleeping; Appetite and/or weight loss or overeating and weight gain; Thoughts of death or suicide; suicide attempts; Restlessness, irritability; Persistent physical symptoms that do not respond to treatment, such as headaches, digestive disorders, and chronic pain.” By that definition I am currently deeply depressed, yet I prefer to call almost all of the elements in the list as “traits” to differentiate them from the disease “symptoms” of suffering and incapacitation.
I not only have a majority of the “traits” of depression, I have many of them at a very high intensity. Just about any Psychiatrist would diagnose me as being clinically depressed after asking me if I had the “symptoms” on his checklist. Except those who are wise enough to include, “are you suffering or experiencing any incapacity because of them?” I do know Dr. Pies and Dr. Ghaemi ask, but that is unfortunately not the case for thousands of people I have met. My answer of, “I do not suffer at all, I see the experience as insightful and highly valuable as it enhances my ability to perform in many ways” might confuse the doctor into thinking I am delusional, but if he was able to get past his prejudice for seeing disease he could only conclude that I am intensely depressed by any reasonable measure, yet certainly not ill or in disorder.
Besides, the list in the DSM is a joke. At each different intensity, depression is a rich tapestry of physical, mental, emotional, spiritual, social, and career/financial elements in an infinite variety of permutations. Trying to simplify it into a short checklist tells more about how little the authors understand depression than it does about the person experiencing it. The DSM does mention suffering and incapacity, so at least it gets that right while many of those who use it assume that is a given for anyone with the “symptoms” on the list.
While a few of the “symptoms” in the DSM are clearly signs of suffering or incapacity, most of them are not in the mind of a trained person. From the perspective of someone who has taught others to accomplish Bipolar IN Order, I would argue that the disorder is more like the incapacity and frustration of not understanding mathematics than a typical illness like cancer or diabetes; two illnesses often compared to depression and bipolar. Since you can teach mathematics, but cannot teach anyone how to change the biochemistry of cancer or diabetes by only changing their thinking, depression and bipolar are clearly not as comparable as people like to assert. I would argue that the “disorder” is more related to not understanding how to function in the states and less to do with what most people assume when using the words “illness” or “disorder” – a biological condition like a bacteria that needs to be removed. The inability to function or remain in comfort is the cause of the suffering and incapacitation, not the “traits” themselves. The numbers and symbols on a page are not the real cause of your inability to function mathematically either. Knowledge is a useful thing.
I could make the same argument if I was currently manic, and that is where the whole depression and bipolar “disease” model breaks down. The context of bipolarity associates the illness with the state, but the inverse is not true. Being bipolar does not mean that one is ill unless the state includes the “symptoms” of suffering or incapacitation. Getting rid of all of the “traits” and not just the “symptoms” of disorder leaves the person unprepared to face the next episode. As Dr. Ghaemi points out, “One can never say 100% in medicine, but more than 95% of the time, based on established repeated studies, they will have a relapse within a few years, usually severe relapses at some point.” Far better to teach how to live with the “traits” and keep the “symptoms” from happening.
Please understand that this does not in any way negate the efficacy of medications in removing the dis-ease or the legitimacy of calling the “symptoms” of suffering and incapacitation an illness. As long as we do not oversimplify, and we understand the difference between the “symptoms” of disorder and the “traits” that provide the context for disorder, the arguments Dr. Ghaemi makes are perfectly valid. People who suffer and lose functionality when in states should take medicine to keep the intensities from getting outside of a range they can handle.
Only those who can handle all states can claim medicine is no longer useful, and so far that is a very small group compared to the whole population. Many of us, in fact, still use medicine as a convenient way to keep in a preferred range even if we can function highly in the more intense states. They simply find it a useful tool that does not need to be discarded. They do have the benefit of needing much lower dosages, though, which minimizes any side effects. I am not arguing against medicine or remission, but only against the assumption that the beliefs about them are incontrovertibly true.
With so many people thinking that remission is the same as “cured,” the problem is all too real. They assume when I say Bipolar IN Order that they have achieved the same thing because they are not currently ill, but during the next cycle they are back in disorder while I am exploring yet another fascinating state with its own unique rewards. What they do not understand is that I, and the many others I have taught, are not “symptom” free in the way commonly thought; we experience “traits” every bit as intense as anyone in disorder, but we neither suffer nor are incapacitated by them. We are no longer in danger of relapse because we are already functioning highly at intensities that those without our understanding mistake for the illness. Why do I need to take prophylactic medications to keep the “symptoms” away when the “traits” are a rich and insightful part of my life?
Dr. Ghaemi says, “My point is, though, that even with full remission of all symptoms, people often need to make other efforts to get to functional recovery in life, repairing relationships and resuming work or other activities that they had not been able to complete in the past due to the interference of bipolar symptoms.” That is not what I mean when I talk about functionality and I don’t think Dr. Ghaemi means all “traits” along with all “symptoms.” I mean being able to function highly during depression and mania, not only when in remission. Yes, when we were in disorder we caused many problems that need to be addressed, but we do not need to be “symptom” free as commonly understood to do it. “Illness” should never be an excuse for bad behavior nor a reason for putting off repairing disruptions in our relationships.
When we achieve Bipolar IN Order, we can function highly in all states and remission as commonly understood is irrelevant since there are no “symptoms” of illness to remove. Although, in defense of remission, I have never seen anyone get to Bipolar IN Order without first making it to remission as an important first step and following a well designed plan of small incremental steps based on incredibly thorough assessments that include awareness, understanding, functionality, comfort, value, and time to escalate at each level of intensity.
One might argue that not everyone can achieve Bipolar IN Order and that is a valid point. But, since those making the argument typically have never achieved it themselves or taught anyone how, they have no basis for arguing whether it can be done, how to do it, what the requirements are, or what percent of the population can do it. I can tell you from direct experience that it definitely can be done, how to do it, what the requirements are and are not (we have successes with people others say are incapable for various reasons), but we do not know what percent of the population can achieve it until we try to teach everyone how and account for the myriad of factors that might require modification of the lessons. Based on my experience teaching others, I suspect the percent who can is far higher than anyone less informed might think.
The “science” that proves bipolar is an illness does not take any of this into account, yet many still claim the authority of “science” while dismissing examples that contradict the theory that being manic or depressed equals illness. That is an affront to science and makes a mockery of its most central principle of testing theories against all evidence. Without constantly challenging assumptions, we would still be thinking science has proven Earth the center of the universe or that my depression is an illness. Therefor, I fully endorse Dr. Ghaemi’s final statement: “Let’s not oversimplify and parody medicine, disease concepts, psychiatry, and medications. Science is a useful thing.” But, sometimes dogmatic science sponsored by commercial interests has yet to catch up with deeper understanding and direct experience. As Steve Jobs wisely pointed out, “Don’t be trapped by dogma – which is living with the results of other people’s thinking.”
I would love to hear your thoughts on this. Please comment below and continue the conversation.