I know its a corny old joke but the point is that patients don’t get any time to practice. Once you’re told you have a serious illness you get thrown into the game right away. You’re left to fend for yourself against the 35,000 word vocabulary that doctors graduate with from med school. But you don’t get an opportunity to go to med school for years to balance out the inequality.

I once compared compliance to slavery. Follow the rules – explicitly – rules you had no hand in shaping. And at times I have been “compliant”. At the same time, I’ve been human and subject to the foibles and frailty of the human condition, compounded by the stresses of daily life the normal world throws at me as well as the additional stresses of daily life living with a chronic illness. Between the physical stresses and the emotional stresses complicated by medication side effects, relationship interactions, survival tactics, the yearning for normality and the plain desire to just get my life back, my behavioral patterns aren’t necessarily totally predictable.

So is it any wonder that I might act in ways that may be against my overall interest? I’ve studied The Patient Activation Measure and applaud its value as a practitioner’s tool. At least the doc has something that follows the protocol of their training. And that is very important as doctors often don’t take anything seriously unless it does.

But after 30+ years of living with a chronic illness, the P.A.M. isn’t a linear journey for a patient. Some days I’m no more advanced than I was 28 years ago. Other days you’ll find me at level 5 on the scale even though it only goes up to level 4.

Many days I yearn for something simpler. I dream about the days of Marcus Welby and doctors who made home visits. I have this fantasy that medicine is no longer about science but it’s about the core of my humanity. I long for the doctor who will see me for who I am, listen reflectively to my story – not my history – enter imaginatively into my narrative and poke around like Lewis Carroll and magically touch the source of my dis-ease….

Other days it’s like the movie “Groundhog Day” with Bill Murray who wakes up every day and its the same day, replaying itself again and again. Just as the struggle with controlling my own behaviour is ongoing. For many patients, the concept of “engagement” takes on many meanings. You’ve touched upon a much needed discourse.

Zal

Dan Airely’s work in behavioral economics is also at work here. Predictably Irrational. I too am an engaged patient, but at times even though I know what I should do… how I should behave… what should go into my mouth.. I do not always behave in my best interest. Call it irrational, rational rebellion or just plain fatigue.

The balance of my behavior is overwhelmingly compliant (in 30 years I have never missed a dialysis treatment) and because I have kidney failure I should not have any dairy or cola drinks. I must admit sometimes I have a skinny cow (diet coke and vanilla ice cream) luxuriating in the cool creamy carbonation while feeling guilty because several researchers have proven that I have just raised by phosphorus level — which is bad.

The opportunity is getting patients engaged, the challenge is keeping them engaged– the beauty is an engaged, educated patient who is self aware enough to know that today they are deviating from the plan “in moderation” diligently getting back on the program tomorrow. You must be know the rules of the game before you can break them.

Celeste