I am putting together a talk that I will be delivering next month in Princeton as a grand rounds lecture to psychiatrists and other clinicians. The name of the talk is:
"Controversies in Psychiatric Treatment: A patient/reporter discusses compliance."
Psychiatry is only starting to wake up to the issue, and you can make a strong case that noncompliance is the number one obstacle to our stabilization, remission, and recovery.
According to one study, 50 percent of us are not fully compliant with our mood stabilizer. According to another, patients go off their lithium on average after about six months.
Only one quarter of patients are still on their antidepressant after six months. In one of the very few long-term clinical trials for bipolar, only one in five stayed on their Zyprexa after 48 weeks.
Why won’t we just do as we’re told?
To start, there is the "problem" patient. If we’re still struggling with our illness, we are likely to be dealing with a lot of cognitive and behavioral and emotional malfunctions. We may not be thinking straight, we may lack motivation, we may be extremely fearful. Often, we’re disoriented and confused. Our illness has the upper hand on us, and here we are, sent out the door with a cryptically-encoded piece of paper.
Even in the best of times, we have various bad habits and personality quirks to contend with, the type that are also the bane of the rest of the world. Maybe we’re badly organized. Maybe we have issues about authority. Maybe we believe that meds are a crutch.
Then, there is the fact that our illness makes us walking anomalies. The rest of the world often doesn’t appreciate our capacity to think and feel far wider and deeper than they do. We tend to see the world through the eyes of an artist and poet and visionary and mystic. Yes, we all want to be well, but many of us adamently don’t want to be like everyone else.
For all the horrors our illness visits upon us, we are justifiably concerned about having our wings clipped.
Add to that the "problem" meds. All of them are very good at getting us out of a crisis, but the long term is far more problematic. Very little is known about long-term treatment. In fact, the long-term treatments are based on short-term treatments.
Do you see a problem brewing? It may be okay for me to feel like a fat stupid zombie eunuch for a few days or weeks or even a few months. If this is what it takes to keep me from dancing on tables or wanting to jump off a balcony, I’m willing to be a man and take my medicine
But eventually, I am going to want something approaching my old life back.
Finally, throw in the "problem" clinician. The biggest complaint I get from fellow patients is their psychiatrists don’t listen. Too frequently, they are told they must put up with burdensome side effects - even ones that pose serious medical risk - as the price for being stable.
After all, you don’t want to go back into the hospital, do you?
To make matters worse, they are told they will have to stay on their meds the rest of their lives. These same awful meds.
Is this it? they wonder. A miserable half-life for me? For the rest of my life?
So we go off our meds and predictably land in the hospital one more time. And then we get blamed for being noncompliant.
Ben Franklin defined insanity as doing the same thing over and over and expecting different results. I suspect he came up with this observation after getting electrocuted in a thunderstorm for the hundredth time.
So are patients insane in the sense that we think we can just go off our meds without having to face the consequences? The short answer is yes.
Are psychiatrists insane in the sense that they really think we’re just going to do as we’re told? With no effort to get to know us, to inform us, to listen to us? Very much so.
Is there a solution? Yes, but there are no easy answers. As patients, we cannot wait for psychiatry to become more enlightened or for a broken mental health system to fix itself. The onus is on us to educate ourselves, to form working partnerships with our clinicians, to make them listen to our concerns, and to hold them fully accountable.
Yes, we need our meds. But we need smart meds strategies, not dumb ones. The best way to ensure a dumb meds strategy for yourself is to be uninformed and unassertive with your psychiatrist.
As for the clinicians I’ll be talking to in a few weeks, I will respectfully proffer no end of helpful suggestions. Think of it as my prescription to them.
I wonder how compliant they will be?
Author and Advocate