Posted August 5, 2013
I thought a lot today about my group therapy, surrounded by people suffering from bipolar illness. We all have this swagger in these groups. I think it is because it is our time to be heard. We are in my opinion all truly unique individuals who see life differently, but in a way distant from the society we live in. That’s an interesting concept by itself but the most interesting thing for me was the way we looked at each other’s struggle with the illness. Nodding our heads to each other’s stories, as if we knew exactly how the other person feels or we were actually part of their life during those times. Complete strangers, yet chained to each other by one common theme.
It was also amazing to see the reaction of the social workers; it was truly a joy to watch. They were so intrigued by our reactions to each other’s stories. It was first time in a long time that I actually thought someone is listening to what I say and I have someone who can back me up. I found it amusing, I always wondered how social workers see the illness to begin with. Do they see the illness the way society sees it? Or do they see it as the science of psychiatry sees it? I say science because I think the whole spectrum of psychiatric health care as a whole is responsible for treatment of an illness. Let me call it for a lack of better term “maintaining the symptoms of bipolar illness,” since there is not an actual treatment for the illness.
So here is my answer to the above question: They saw us as the illness speaks for itself, and that is “I am a chronic disease with no treatment” or as doctors would like to explain, “It is a disease with an idiopathic cause, treatment, and prognosis.” Well indeed, idiopathic treatment and prognosis since we do not even know how the treatment works and what the prognosis is in most cases. In other words it is not known if the patient will have another episode even though he/she is on medication. That’s what makes it a bit side-splitting to me.
So here I am amazed by the social worker’s reactions to our stories, but something else crossed my mind. How does society see bipolar disease? And why do researchers contribute more of their time to treatment plans that circle around the idea of seeing bipolar as merely a mood disorder in no relation with someone’s life above and beyond the manic episode? And by that I mean why not concentrate more on patient’s cognition before their manic episode as well as after their episodes?
Let’s take for example the following: Society sees a bipolar patient as moody. In common language moody means someone who has fluctuations in his/her mood or as common people know it “someone who is happy one minute and depressed the next.” It is a huge misconception but one that exists. Now how did I link what researchers do to how society sees the illness? It goes back to the group therapy. Certainly the social workers saw bipolar as the way illness presents itself, it is idiopathic — an adjective used primarily in medicine to mean “arising spontaneously or from an obscure or unknown cause.” Research has been mainly concentrating on the fluctuations in moods. For instance, the mood charts they give us to fill out are mostly focused on how exactly the illness is defined in its psychiatric terms and how to prevent it — after you have had a manic episode and receive a diagnosis of bipolar. However, not all forms of bipolar disorder have both symptoms of mania and major depression. For example, all that is required for a diagnosis of bipolar I according to the DSM (Diagnostic and Statistical Manual of Mental Health) is at least one episode of mania that can’t be attributed to drugs, other substances, or another medical condition.
Well I recognize the definition but here is the confusing part. Why is it that in psychiatry we look for prevention of further episodes rather than looking for what caused the episode in the first place? In other words why just look at the signs and symptoms rather than know the cause? The answer to that question is a tough one mostly because there are no specific causes to psychiatric illnesses like bipolar but I have tried to answer these questions during my illness. I might be wrong but either way no one really knows what causes the illness, which makes it more interesting to speculate on.
As someone who suffers from the illness, I think, it is hard to explain its burden on an individual but bipolar, or at least bipolar I, is more or less like a heart attack. In a sense that it has permanent sequelae (an abnormal condition resulting from a previous disease) on your brain as a heart attack has on your heart. As a patient, this was the hardest concept to rap my head around which, for a while, stopped me from accepting the illness and made me chase for answers. After all that’s why they call it a chronic illness, and subsequently it requires that acceptance by the patient to be able prevent the subsequent episodes.
From my experience once you have a manic episode the chances of you being able to go back to your “normal life” that you experienced before the episode, in this era of medicine with the available medicinal and psychotherapy treatments, is almost hard to come by. I can conclude this because most patients are in search of normalcy after they are diagnosed. Surely people can be successful in life and that’s not the argument. But rather is the patient really “normal” as it is defined by society and the Mental Health Act? To answer this question requires information about the patient’s quality of mental health, in a sense their health in general and their quality of life. The same way once you have a heart attack you better not put too much strain on your heart and try to improve your quality of health and life after the heart attack, which is a well-known science to society and medical community. The same goes with bipolar and its effect on brain but not exactly. Unfortunately, there is not much known about the illness’s pathophysiology and its course to be able to come up with a set of guidelines that can guarantee and help to improve quality of health and life in that patient. This has always been my argument and it is an important one because it produces a gap between the illness, society, and science of medicine. This gap will always be part of the illness and to some magnitude the reason why a patient would chase his/her mania. They chase it to create a sense of normalcy for himself/herself and may be even to show to people around them that they have a sense of normalcy. Although, in reality that gap can never be closed, this gap can be defined as quality of mental health and life in patients who have experienced the manic episodes compared to the normal population. The most successful scenario is that you will be seen as a successful person with bipolar, and let’s be honest it still has its stigma.
I cannot put a number on it but it would be a great study to conduct. To figure out what percentage of people with bipolar actually think they can have their “normal-self” back after their episodes and their treatments? And by “normal” I mean as they saw life before their episode. So it is the patient who defines normalcy and no one else. Knowing this bit of information can help a lot of patients deal with acceptance part of the illness and not want to chase it around to fill the gap — to want to prove normalcy to themselves or others to improve their quality of life. How is that really possible though? How can a patient just let go? Well it depends on what you are letting go of.
This is how I see it our group consisted of 6 people but almost all thought about their past, as a patient beside me explained, “He sees himself as whom and how he was in high school” and that became “his reference point” — a point of normalcy that was accepted by society and himself and people around him. I personally lost my reference point mostly because I figured there is no point to have one. I rather accept the fact that my overall mental function and mental health, which includes my ability to think as norm in this society won’t be the same as it was before the episode. Thus, I learned to let go. But for him it was still unclear, I think I can understand why he felt that way because I felt that way for most of my illness.
To understand this I should talk about the illness itself. Imagine living in a world that one minute your mind has billion great thoughts in this world that actually made sense to you but not accepted by society and its beliefs system. A society defined as broad as the one we all live in as humans. Or as small as our friends and family, one of the first primordial societies that one grows up in. So there is that world but then there is this other world that in it you are just a blank piece of paper with no pen or pencils to write with. Well, those minutes with billion thoughts running through your mind is the manic state, which is not the reality, at least not with this society’s standards. The blank paper with nothing to write on is your life after the episode, it is the depression. As Kay Redfield Jamison, a psychologist who has bipolar explains it:
“I compare myself with my former self, not with others. Not only that, I tend to compare my current self with the best I have been, which is when I have been mildly manic. When I am my present “normal” self, I am far removed from when I have been my liveliest, most productive, most intense, most outgoing and effervescent. In short, for myself, I am a hard act to follow.”
“I am a hard act to follow.” To me that sums up the search for a sense of normalcy as seen by a bipolar patients.
Now 6 out of 6 people including myself at some point in our illness looked for that “reference point” to fill that gap, disequilibrium or the imbalance in our life with, all of which can be summarized as wanting to be as close to what the norm is in a given society. Norm here is defined by society that you live in, be it your friends and family or your society as a whole. In my experience, the reference point was always to express myself as a person who is greater than the sum of all my accomplishments, really an obsession with success that has cultural and sociological roots to it. I guess I think this way because my episode affected my career. In many ways it stalled my medical career, my dreams and has stalled my life for the past couple of years and puts the burden of seeing myself as a failure. However, the urge to succeed at high levels has always been there.
This brings me to a broader question, in reality, can the “reference point” illustrate a time when you were happiest and most successful in your life? It is hard to answer that question now because after a manic episode the definitions of happiness and success have changed in the eyes of the patient and that is why it is hard to explain because only you as a patient can define what you think is happiness after your manic or hypomanic episode. Most bipolar patients would agree with this and as one of the patients in the group who has been dealing with her diagnoses for more than 30 years put it today, “It is all relevant after your manic episode.” Something that is hard to put your head around as a physician and society.
One thing is for certain, the depression is real after the episode. And this, in my opinion, is by far the biggest fallacy in society and the medical field that leads to bipolar being one of the toughest chronic illnesses to treat. So much emphasis is on mood measurements, its elevation and depression, that I think psychiatry as science ends up overlooking the need to treat the depression as a separate entity by itself. DMS mostly attributes the depression to the manic episode, in other words it defines the depressive state as a cause of the illness and does not see it as depression with multifactorial etiology. This is really obvious when you go back to the DSM definition and how it specifically says major depression is not a criteria to diagnose bipolar I but the mania is.
As a patient I personally think that depression is the ticking bomb in the illness, it makes you search for your “reference point” to define normalcy and by that it makes you search for the chaser for mania to fill in that gap that is caused by the episode itself, as I described above. This eventually brings out the stress that will push you towards another manic episode. At least that’s from my experience but it would have been interesting if one can design a study to put emphasis on inquiring a detailed history of pre- and post-manic life of the patient in order to identify the stressors that in fact caused the manic episode to begin with. I believe from my experience the stressors that caused my episode in the first place have an identical origin to the stressors that later on went on to cause more manic/hypomanic episode and really defined the prognosis of my illness.
Studies have actually shown that life stress and “mood symptoms” are temporally and casually related to one another. I think more can be done in this regard because I believe as a patient if you treat the depression early on you might be able to stop the manic episode and by doing so you can prevent bipolar illness sequelae, a word I like to use to replace “mood changes.” As I said before, once you are bipolar the illness has taken its toll and has become a chronic illness with its own sequelae that is not well understood and a tough one to treat.
Therefore, can treatment of prolonged depression act as a preventive measure for bipolar disorder and subsequent manic/hypomanic states? Maybe because depression in my opinion is a disorder that is not diagnosed in time, it is usually diagnosed once the full blown physical and psychological effects of it are seen, and the reason for that is another subject of discussion by itself. Secondly, is there a link between early intervention of depression and slowdown of the manic/hypomanic episodes, be it your first one or your subsequent episodes later on in the course of the illness? I can only say this from my own experience, the answer is yes. Since I started my antidepressant I stopped chasing for the gap and the imbalance in my life. It is either that or the fact that I might have unconsciously used psychotherapy to cope with it and in a way I learned not to chase my mania anymore. Either way I haven’t had an episode in almost two years now.
I think it is a combination of both; not only you need the medication for depression but you also need medications for your mood once you have been diagnosed with bipolar, specially the antipsychotics, to prevent another episode. I believe the combination of both medications can stop the so called “mood swings.” As much as I do not like to use that term but it is the only time that actually makes sense in context of medicinal treatment since you are preventing psychosis plus depression simultaneously. Also, psychotherapy has a huge effect on overall prognosis of the illness. I never realized how much psychotherapy I have done unconsciously. I believe these are the questions that each patient should ask him/herself, to be able to understand their manic and depressive states, because once you understand the two states you can then concentrate on the stressors that can give rise to both states. Of course, that’s when the role of psychotherapy becomes clearer, since it helps the patient to understand these concepts better.