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Medical Student, University of Toronto

Erene Stergiopoulos is a third year medical student at the University of Toronto, and holds a MA in the History and Philosophy of Science and Technology. Her current research in medical education studies the experiences of medical students with disability and chronic illness, and is funded by the AMS, OMSA, and U of T CREMS. Her freelance writing about health and illness has appeared in STAT, Nautilus, Hazlitt, and Motherboard.

Remembering what ‘chronic’ means for people with chronic illness

Our time with patients is counted in minutes, sometimes hours. Encounters are brief — the time it takes to perform an ultrasound, take vitals, draw blood — and then we quickly move on to the next case. For patients, time with an illness is quantified on an entirely different scale. It’s measured in weeks, months and sometimes years. When we think of a chronic illness, we imagine a disease that will last indefinitely.

In a patient’s life, the moments of actual contact with clinicians make up a small portion of their experience inside the health care system. The rest is spent in waiting rooms, inpatient beds and managing a daily routine of health, medications and illness. And that experience is increasingly becoming the norm: approximately half of Canadians live with at least one chronic illness, such as diabetes, connective tissue diseases, inflammatory bowel disease and mental illness.

But health care is frequently structured around acute flares and short-term fixes. It’s built on brief encounters with health care providers in a way that can’t always acknowledge the time spent in between. We intervene at times of crisis, and send people home when we believe they can manage on their own. In the process, it becomes easy for us as clinicians to forget just how much daily work goes into managing an illness for the person who lives with it. That daily management, in turn, leaves people with chronic conditions in a limbo between being not-quite-sick and not-quite-healthy, navigating a system that’s struggling to acknowledge their experience.

Biomedical advances have undoubtedly improved the lives of people with chronic illnesses. Even diseases that were once considered deadly — conditions like HIV and certain cancers — have benefited from drugs that transformed them into chronic, manageable conditions. Every year, I witness the health care community’s excitement around new drugs that have revolutionized treatment for chronic disease. At the same time, I’ve seen that excitement trickle down into the way we talk to our patients: we expect them to feel as positive as we do about new drugs and biomedical successes.

That positivity isn’t unfounded: compared to the aggressive treatments of the past that carried significant risks and poorer outcomes, the newer, safer targeted therapies are much less disruptive to patients’ lives. Yet when health care providers treat an illness and its management like a minor inconvenience, we might inadvertently deny our patients the chance to frame their illness in their own terms. While biomedical successes are stories to celebrate, we often forget that we’re still talking about an illness — a loss of health — that requires daily tasks to manage drug side effects, altered abilities and the challenges of self-care. All of that work happens in the moments we as health care providers don’t get to witness — when the patient is at home or at work, for instance — but that make up the overwhelming majority of a person’s experience with illness.

Social scientists and humanities scholars like Joseph Dumit and Eric Cazdyn have argued that trends in biomedical research have steered us away from the idea of cure and instead favour chronic disease management. Quite so, for pharmaceutical companies, there are more financial incentives to produce a lifelong prescription compared to a one-time cure. And within this new paradigm of chronic management, we’ve neglected to understand chronicity from the perspective of our patients.

We can do great harm by ignoring that perspective. After experiencing a heart attack at the age of 39, the sociologist Arthur Frank wrote, “Experiences are to be lived, not managed… No one should have to stay cool and professional while being told his or her body is breaking down, though medical patients always have to do just that.”

While biomedical advances have prolonged lives and improved outcomes, we can’t ignore that a lifetime of illness creates considerable burden on patients and their families. The philosopher S. K. Toombs, who herself had multiple sclerosis, described becoming ill as a process of “radical loss of certainty” about the future, about one’s self, and one’s sense of wholeness. The sociologist Michael Bury called diagnosis with a chronic illness a kind of ‘biographical disruption,’ where the taken-for-granted assumptions of everyday life are completely overturned.

As health care providers, we have the ability to validate our patients’ experiences; sometimes we will be some of the first people to help them navigate life with an unpredictable chronic illness. But when our enthusiasm for successful management outweighs our compassion, we can unintentionally shut down dialogue and stop patients from expressing their experience in their own terms. In this instance, being compassionate means learning from patients to understand what chronic management means to them. In the words of Toombs, it means creating a space for “shared meaning” between patients and clinicians, which can be just as therapeutic as our biomedical interventions.

This blog post is based on a feature published in February 2017 in Hazlitt Magazine.

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