Here's a question no one has ever asked here before. On the "Ask" feature, "U won't like me when I'm angry" writes:
"I am a researcher with bipolar diagnosed many years ago - I am interested in giving something back to others with bipolar. There may be research funding available for a small to medium research project."
I didn't even have to think about this. An answer - or in this context a suggestion - instantly popped into my head. Here's the background:
For seven years, I regularly attended support groups. During three of those years, I ran a DBSA group in Princeton, NJ. Since moving to southern CA two and a half years ago, I have been a sporadic attender. What sticks out most in my mind is the number of people I came across who are "stuck" in their recovery.
These are people who have had satisfactory results with their meds. Not necessarily good results - there are always meds issues - but they have achieved a reasonable degree of stability and are in a position to get their old lives back. But here's the problem - they don't. Typically, they are out of work and their chances of finding meaningful employment are slim. If they are not in a loving relationship, they are in no position to seek one out. If they are, the relationship tends to be in jeopardy. Often, coming to a support group is their only social interaction all week.
Many of these individuals are fairly adept in managing their illness. The are compliant with their meds, they keep to regular sleep schedules, they manage their stress and are vigilant with regard to avoiding mood triggers, and they even make smart lifestyle choices. But still - they remain stuck.
So, what are they doing wrong? Loaded question, as we are assigning blame, but let's ask it anyway. That was the gist of my response to U won't like me.
In 2005, The Australian and New Zealand Journal of Psychiatry published an article by Melbourne researcher Sarah Russell PhD. Dr Russell did something I've never seen in research before or since: She solicited the wisdom of patients.
What she did was survey 100 "well" patients and ask them what they did to get well and stay well. In an article on my website, I reported:
The 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.” Rather than simply taking their meds and forgetting about their illness (an impression created by their doctors), patients would “move swiftly to intercept a mood swing.” Moving swiftly often meant a decent night’s sleep and other strategic stop and smell the roses moments.
I'm sure Dr Russell only thought she was conducting a modest, low-budget study, but in my Newsletter from that year I acknowledged her efforts with "Study of the Year" honors. Without doubt, this is the definitive research on "what patients are doing right," and we could use many many more.
But we also badly need the logical corollary: What patients are doing wrong. I'm going to use "we," here, so as not to separate "us" from "them." For instance, are we refusing to take responsibility? Are we blaming others? Say, we're having trouble finding work. Are we blaming it on the current economic crisis? And how valid is that excuse if we haven't so much as bothered to contact one potential employer in two months?
And yes, our families don't understand us, but how much effort have we put into understanding them? And - hello? - calories don't take days off, especially on the holidays.
Okay, now that we are owning up to our shortcomings and our excuses, is there any way to tease out what is driving these behaviors? For instance, if we say we are looking for work but are not contacting at least ten potential employers a week or learning a new vocational skill could it be due to a fatal tendency to procrastinate? Are we easily overwhelmed? Do we have social anxiety issues? Do we adopt avoidant behavior to stay away from situations we perceive as stressful?
A number of studies have found distressingly low rates of employment and loving relationships in bipolar populations, but they offer no insights into the underlying causes. It is simply assumed that bipolar has something to do with it, and that no doubt is true to a point. But what else is going on?
Alas, we have no answers. Imagine if we had some hard research data on this. Then clinicians could devise therapies and educational programs to help us. Then patients could come up with good suggestions at support groups. Then friends and colleagues and loved ones could hold us accountable. But first, someone has to tap into our collective wisdom. We badly need your feedback on this. Comments?
Published On: September 04, 2009
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