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.
Significantly, both studies also stressed the critical importance for maintaining good sleep routines and waking rest. For many patients, this involved major lifestyle changes, such as moving to quieter surrounds and toning down the excitement in their lives.
The two studies were in general agreement on a number of other key points, such as support and connecting with others, having some kind of stay-well or emergency plan in place, and developing a deep insight into one’s self and condition.
Most intriguing, there was little emphasis on meds, and one can see the logic in this: As we move along in our recovery, the emphasis is on what we can do to help ourselves, not on passively waiting for treatments to kick in.
For instance, Dr Russell cites "Damien," who is microscopically attuned to early shifts toward depression or mania. Herbal tea usually "does the trick," but he does have Zyprexa handy as a standby med. He has used the Zyprexa twice in the past year.
We need to emphasize here that Damien is hardly a novice. When Dr Russell talked to him, he had been "in the game" for ten years. If you’re like me, it probably took several years before you acquired a level of confidence in your stay-well skills. And, needless to say, there are always setbacks.
Nevertheless, as both studies make abundantly clear, we are our own best resource. Let’s keep the conversation going …