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Are We Cowboys or Managers of Our Chronic Conditions?

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The idea that I should "manage" my chronic disease has always struck me as optimistic daffiness on the part of those who want me to do this. The word "management" raises images of organizational charts and neat project timelines: diagrams of authority, deference and – dare I say it – compliance by that which is being managed.

This bears no relationship to my experience of trying to live a full, rich life with serious chronic disease, and I have heard the same from many of those I've interviewed. My image of having a serious chronic disease is of a cowboy riding a rodeo bull. Take a look. You call that management? No. But it gives you a pretty good idea of what it feels like to have a serious chronic disease. Most of us are just trying not to fall off the damn bull.

Chronic illness is not a narrative that spins out like a story over time. It's a series of discrete events and symptoms, each of which is a problem to be solved today, not necessarily related to yesterday's problem. This is our experience. It is also how our clinicians tend to treat our complaints, and we follow their lead. While the now familiar (to clinicians) Chronic Care Model lays out a framework for helping us to assemble a more coherent notion of our disease, its effects on us and what we can do about them, the model's use among those caring for people with high prevalence chronic conditions like asthma and diabetes remains modest. And for lower prevalence diseases like epilepsy, cancer and Crohn's disease it's pretty low. I believe that the model is based on the assumption that a more nuanced, comprehensive understanding of our disease will lead us to take more measured, effective actions to care for ourselves. I truly hope this is so.

In the meantime, however, health professionals promoting tools designed to help us reduce our symptoms, change our diet, take our drugs and keep our appointments often assume that we already view our disease as a causally related set of events that we need to – and believe we can – control. In other words, "manage" like a boss manages her employees. The thinking goes that with proper attention, each indicator of the disorder will remain within range and each symptom will subside. Does this also mean I can fire my pain when it proves resistant to my interventions?

I understand that the term "management" is used to convey a sense that we can, in fact, better organize our care and, as a result, do better. But I wonder if those who use it have given any thought to the randomness of disease, our uncontrollable physiological processes and the limits of medical intervention that will all too often undermine our confidence in our self-care skills and leave us in the dust, staring up at the bull.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


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Health Care Quality   Inside Healthcare   Medical/Hospital Practice   Patient Engagement   Jessie Gruman   Participate in your Treatment   Promote your Health  


Comments on this post
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susan fitzpatrick says
April 23, 2014 at 8:29 PM

Not be curmudgeonly(Ok - maybe a tad) - but seems to be some "baby with bath water" is being tossed about here. I think of managing a chronic condition - be it lupus or rheumatoid arthritis or diabetes or MS - as an essential component of having some control over what is not always a fully controllable situation. Recognizing the signs of the ebb and flow and becoming aware of your activities and how they effect your physiology seems to me critical. We all, whether we have a chronic condition, or we are aging, or we are going through an acute episode that will eventually resolve can not just through our hands in the air and take no active interest in what we can do to manage, yes manage, our lives. I have friends with chronic conditions whose lives now seem consumed with waiting in emergency rooms or physicians offices only to be told - yes, go home and relax, or take your medication, or - well you might have felt X a few hours ago but we can't find anything wrong right now come back if you feel X again - this is simply not a way to live. The fear, the panic -- and, well here comes the curmudgeonly part - the desire that maybe the next person we see will have the magic carpet and whisk us away - can keep someone yo-yoing back and forth, in and out of the medical system and getting nowhere. Now there are times when it is unrealistic to think anyone has control over a complex physiological response that could tip from stability (of a sort) to raving instability with little warning. But I do not think all these scenarios should be treated as a natural kind. There should be ways to help individuals read some signs a bit -- to know what is expected and what you can do to help yourself and to recognize something very wrong that should not be and cannot be "managed."

Laurie says
April 26, 2014 at 9:32 PM

What an interesting discussion. In my mind, manage is not the same as control but is trying to find some semblance of normality, some way to have a say in things, when situations do become unpredictable, scary, and unknown, like with a chronic illness. One of the most important lessons I've learned (and for some reason have to keep re-learning) as an adult, as a parent, as a 'boss', as someone with a chronic disease, is that I don't have control but I can try to guide, suggest, provide the right environment for growth and for healing. Furthermore, as a patient, it is critical to not assume that anyone else is going to be managing your illness for you -- certainly not the healthcare professionals -- therefore, it is important to choose how and when to be involved.

Nora Miller says
April 29, 2014 at 4:18 PM

What an interesting perspective! I read this not long after reading Kate Granger's comments rejecting the "battle" perspective on cancer. She notes that battle terminology is inappropriate and fails to accommodate patients like her who prefer language that integrates illness and dying into the process of daily life. After reading that, I would have thought that "managing" would be more suitable. This article counters that with the idea that managing fails to address the randomness and idiosyncrasy of illness. You rightly suggest that the idea of management belies the persistent weaknesses in our understanding of many diseases and the unacknowledged difficult of "managing" what we still don't understand. Very illuminating. Thanks!

Annette McKinnon says
April 30, 2014 at 8:14 PM

As a person who has taken part in some self-management of chronic disease courses, I agree with you Jessie that it is not manageable in any real sense. The scope in the courses seems to be on developing healthy habits in other areas of your life, working on resilience and coping skills and developing a support network. In truth more of a 'living with' chronic disease.but that doesn't make the course sound very powerful.
Maybe it's the lack of power that makes so many people use fighting words. We just end up doing the best we can with what we've got, though we work really hard at trying to find a way to get ahead of it.