Sunday, March 1, 2009
"How do you rate your meds in managing your illness?" I asked my readers here in survey that ran through the month of February. The results, quite frankly, astonished me.
Fifty percent responded that meds were their single most important tool and another 32 percent that their meds were "important, but no more so than their other tools." In other words, four in five patients put meds at the top of their list, either as a solo act or with a dance partner.
As for the one in five: A mere three percent said meds were less important than their other tools, just five percent said their other tools were way more important, and another five percent assigned no importance to meds (or were not on meds).
Why am I surprised? In the 10 years that I have immersed myself full-time in researching my illness and listening to patients and loved ones, never once have I come across an "end-user" who has told me of writing a letter of appreciation to Eli Lilly or some other manufacturer or talked about starting up, say, a Seroquel fan club.
To the contrary, all I hear is complaints. Meanwhile, over the same 10-year period, I have witnessed the rise of the recovery movement, which acknowledges the role of meds in our getting better but takes a dim view in their ability to get us well.
What gives? Has everything I've heard all these years been wrong? Have meds been given a bad rap? Are they really much better than patients have been letting on, way decidedly better?
Not exactly. No, in fact. Make that unequivocally no. The month before, I polled my readers on how well they are doing. One in four replied they were "in crisis or close to crisis." Four in ten reported they were "stable but not well." Just one in five said they were on the way to recovery, and only 14 percent responded that they were back to where they wanted to be or better than they ever could have imagined.
Granted, neither poll was scientific. My readership may not reflect the patient population at large. Moreover, those who answered my second poll may not be the same people who responded to my first. But even taking all that into account, we are looking at numbers that boggle the mind, namely:
82 percent who rate their meds as their number one management tool vs 14 percent who are actually well.
Four years ago, I came across a far more scientific survey conducted by Melbourne researcher Sarah Russell PhD. Dr Russell recruited a hundred bipolar patients who were doing well (either symptom-free and behaving normally or having a sense of control over their illness) and asked them what they did to stay well. Meds figured in the equation, but they were way down low on their list of priorities.
Instead, the people Dr Russell talked to emphasized various mindfulness and stress reduction techniques, rigorous sleep management, smart life decisions, and so on.
Dr Russell's findings are more in accord with my own experiences and those of "well" patients I have encountered, namely:
When we're new to our diagnosis, or in crisis or heading into crisis, our meds loom large. "Snapping out of it" and "getting a grip" are simply not options. Our brains are overwhelmed. We don't know what hit us. We need our meds to do the heavy lifting.
That changes further into the game. Our brains start to boot up. Our thinking comes back on line. We start finding out everything we can. Over time, we acquire much greater wisdom and insight. We pick up a vast range of coping and management skills.
As we become more adept, our meds assume far less importance. We may still be taking them (generally in reduced doses or on an as-needed basis), but we're simply not thinking about them as much. We are thinking far more, instead, about the things that have an impact in the here and now, such as stress and sleep.
For instance, for many of us, missing a good night's sleep is far more likely to result in personal disaster than missing a meds dose. Paradoxically, the key to getting a good night's sleep may be taking a sleeping pill.
The "well" patient understands this. Unfortunately, if my two polls are anything to go by, way too many of us are not there yet.
Much more on Dr Russell's study and related issues in future blogs ...
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.