Tabby throws down the gauntlet. In response to a post here that was highly critical of how doctors treat bipolar, she commented:
I've been coming here nearly 5 years now and I've never once read anything from you that said "do not take meds" or "do not go to a doctor."
Tabby goes on to say:
I have always been told, by family and by the medical profession to "be a good little girl and do what the doctor tells you to do cause they know better than you do." and quite often... as I've gotten older... I realize that the docs really do not always know better than me especially when they do not take the time to get to know me OR worse, they do not take the time to "listen".
I hear you, Tabby, loud and clear. Trust me, many times I have had to stifle myself. Whenever I encounter an unfortunate patient zombied out on a maximum kilotonnage atomic bipolar cocktail my first thought has to do with flushing toilets. Indeed, in my observations, more meds strongly corresponds with greater struggle and far less functionality. The ones who are doing well have figured out how to manage their illness with no meds or low dose meds. I’m sure I can plot it on a graph.
But two things seem to be working for the people who are doing well: 1) They tend to be blessed with favorable work and family and social situations. 2) They’re exceptionally mindful about living healthy and disciplined lives.
So - as a general rule - even though low dose or even no meds is where we want to be, it doesn’t happen overnight. Here’s what we’re up against:
In their second edition to Manic-Depressive Illness (2007), Goodwin and Jamison cite various studies that show this illness simply doesn’t go away. In one four-year study only 28 percent of the patients remained in remission. Extrapolating from this, Goodwin and Jamison note that at this rate, “fewer than one percent of patients would remain in remission at about 10 years’ follow-up.” Goodwin and Jamison also cite numerous studies showing that intervals of wellness progressively diminish in time with each successive episode.
If anything, the two authors observe, the relapse/recurrence rates are understated.
The authors also cite lifetime suicide rates for bipolar in about the six to seven percent range, but these shoot up to 20 percent or more for those in the early course of their illness. My mcmanweb site contains a review of Judy Eron’s “What Goes Up.” Her husband Jim, a therapist who was doing very well on his lithium, went off his lithium. In no time, his behavior went from feeling a bit too good to out-of-control to abusive. Judy had no choice but to bail out of the marriage. For an agonizing year, she waited in vain for the crash everyone said would happen. It never happened, or at least no one was around to see it happen.
So you can see where our doctors are coming from. Not only that, their formative years as budding psychiatrists were spent in hospitals, seeing us at our very worst. Anyone with a sense of compassion never wants to see us in this state again, and that’s where the trouble starts.
Even on “best care” regimes, the track record for bipolar meds is indubitably dismal. The best evidence we have, from the NIMH-underwritten STEP-BD trials conducted over the mid-2000s, found that although nearly 60 percent of the patients got well for at least eight weeks, a full half of these relapsed. In all, just one third of those being treated got well and stayed well over a two-year period.
STEP-BD attempted to duplicate real-world conditions, but the real world - the one I’m familiar with, anyway - is far worse, where high kilotonnage meds overkill is the norm. This may keep us out of the hospital - at least for a little while - but we’re never going to get better.
There’s one more twist to this. For many of those with bipolar II, a wacky and wild night on the town may be coupon night at the Olive Garden. Since, full-blown mania is not part of this diagnosis, the risk-benefit analysis in considering meds is far different than for bipolar I.
That’s the long answer to your question, Tabby. The short answer is you’re right. I’ve never urged anyone not to take their meds or not go to the doctor. For an individual living in a toxic situation lacking the knowledge and discipline to manage their illness by other means, the risk is too high, way too high.
But I've never urged anyone to just be a good patient and take their meds, either. To me, that kind of advice is equally destructive.
I tend to preach a middle way, with a view to getting to low doses or even no meds. But first we need to create our own nurturing environments and master the requisite recovery skills, and that takes time and effort. Even then, there are no guarantees. Every decision carries risk.
The reality is grim. We have a highly disabling and barely treatable chronic illness. To not seek help on one hand is tempting fate. To simply place all our trust in the hands of our doctors is equally tempting fate. But many people with this illness fight their way back to fully functional and meaningful lives. These are the true experts. They’re the ones who know what they’re talking about. We need to be listening.
I see this as the beginning of a discussion initiated by Tabby. Please join in. There are no right answers are wrong answers here. The real insight and wisdom comes from you. In particular, I would be interested in your experiences - both bad and good - when you’ve been off your meds or been on low doses.
Comments below ...