Every person in the spondyloarthritis community has a story. Through Your Story, we share those experiences and the different ways people navigate life, health, and chronic illness. This month, we’re looking at the patient experience from a different perspective.
Dr. James Rosenbaum has spent his career caring for patients and studying inflammatory diseases, including spondyloarthritis. As Chair of SAA’s Medical and Scientific Advisory Board, he has also spent decades helping SAA educate and support the SpA community.
But in a recent personal essay published in the New England Journal of Medicine, Dr. Rosenbaum writes from a role physicians don’t usually share with us: that of the patient.
In “Last Man Running,” he reflects on more than 35 years of running with his older brother, Rick, and close friend, Ed. Over the years, serious illness changed what each of them was physically able to do. Rick developed ALS. Ed was diagnosed with Parkinson’s disease. And after years of unexplained episodes of lightheadedness, Dr. Rosenbaum experienced a frightening cardiac event that ultimately led to receiving a pacemaker.
We asked Dr. Rosenbaum to reflect on what being on the other side of the physician-patient relationship has taught him and what some of the themes in his story might mean for people living with chronic illness.
You write about realizing that what can be an interesting diagnostic puzzle for a physician can feel very different to the patient living through it. How has being on the other side of that experience changed the way you think about patients who are searching for answers?
Empathy might seem like a quality which is obviously desirable in a physician. And while empathy is indisputably important, there might be a threshold when too much empathy begins to cloud one’s judgment. For example, physicians are routinely advised to avoid making decisions about their own medical care or the care of members of their family. Some contend that great technical skill in a surgeon is more desirable than great bedside manner. Of course, it’s optimal for a doctor to strive to understand the perspective of the patient. But the challenge is to maintain objectivity without sacrificing caring.
Your essay reflects on how quickly health and physical abilities can change. What has your own experience, and those of Rick and Ed, taught you about adapting when your body can no longer do everything it once could?
Aging and death are inescapable elements of life. I do not like deadlines. But deadlines force me to complete a task. Death is the ultimate deadline.
Some health setbacks such as back pain from spondyloarthritis are treatable and often manageable. Determination to overcome limitations is essential. But at some point, each of us will need to accept a medical limitation, while hopefully continuing to enjoy those abilities which remain and which give us pleasure.
Running has clearly become about much more than exercise for you. For people living with chronic illness, “staying in motion” may look very different from person to person. What does staying in motion mean to you now?
Motion does not need to be interpreted as literal movement. If you can jog, swim, hike, bike, exercise, or walk, those are great activities. But for some, “motion” could be chatting with a friend, solving a crossword puzzle, writing a letter or story, or reminiscing about sights, smells, tastes, relationships, or events that gave pleasure. Staying in motion means striving toward the goal of personal happiness and the happiness of others.
Read More from Dr. Rosenbaum www.jamesrosenbaum.com
What’s Your Story?
Your experience could help someone else living with spondyloarthritis feel understood, find hope, or simply know they aren’t alone. We’re looking for members of the SpA community who are willing to share their stories in a future issue of eSUN.
Whether you’re newly diagnosed or have lived with SpA for years, we’d love to hear about the challenges you’ve faced, what you’ve learned, and what you wish others understood about life with spondyloarthritis.
Interested in sharing your story? Send an email to programs@spondylitis.org to tell us a little about yourself and what you’d like to share.
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