Last week, I was on a conference call that involved an international group of bipolar experts and advocates. One of the topics that came up was how researchers tend to ask the wrong questions. This is very easy to do if you don’t consult the people you purport to study.
Actually, I’m aware of only two studies where the researchers actually sought out bipolar patients for their wisdom and insight. After the call, I sent a follow-up email to the researcher in charge with some of my observations and with links to these two studies.
It turns out that this researcher was actually involved in the second study. Knock me over with a feather. No wonder she seemed so enlightened. For years, I have been begging for lots more of these studies. I have referred to the first study many times here on HealthCentral. Let’s take a closer look, along with the more recent second study ...
In 2005, Sarah Russell PhD of the Melbourne-based Research Matters recruited 100 “successful” bipolar patients, most of them in paid employment and with a sense of control over their illness. She asked them what they did to stay well. (Abstract here.)
I still remember what a shock it was to me reading this study eight years ago. Standard research tends to involve someone testing their bright idea on us, then letting us know how smart they are. Okay, this is somewhat exaggerated, and I’ve grown a bit jaded over the years, but still - it took till 2005 for someone to figure out that we might actually know something about managing our illness.
These successful patients informed Dr Russell that they were extremely mindful of their diagnosis and “how they were responding to their mental, emotional, social, and physical environment.” This meant moving swiftly to intercept a mood swing, in effect to see it coming before it happened, then act.
For instance, “Jodie,” who has been episode-free for three years, developed "the capacity and insight to see episodes coming on." For example, when she finds herself talking very quickly and craving excitement, she implements her "action plan."
These action plans can be as simple as taking strategic down times.
A 2010 Australian-Canadian study of 33 "high functioning" bipolar patients validated Dr Russell’s findings. (Abstract here.) No surprise, “ongoing monitoring” figured mightily. Thus:
Participants described the importance of learning to pay close attention to their moods and involvement in activities, in order to judge when to make changes. ... Individuals would spread tasks out over the week, cancel social engagements if necessary and maintain some unscheduled time.
As one patient put it:
To me it’s an ongoing basis where it’s like a ship that’s always righting itself, you know. Or when you’re driving, you’re sort of correcting as you’re trying to drive in a straight line. So those were the things that I see, and then I make minor adjustments and hopefully I don’t have to make major adjustments because I’ve been always making these corrections.