Empathetic Doctors Make Empowered Patients – Experts by Experience

“So, tell me what’s been going on, Chris.”

I watched intently as my neurologist – who I had only met thirty seconds before – settled into his chair in the exam room. Upbeat and cheerful, he had a smile on his face, which is just what I needed at that moment of vulnerability. Without hesitation, I began to recount my patient story – a story I knew by heart after telling it over and over again to the countless doctors and specialists I saw in the last three years.

Staring straight ahead at the door, I told him about the curious diagnosis I received in 2004 – Miyoshi Myopathy/Limb Girdle Muscular Dystrophy type 2B – an adult-onset form of muscular dystrophy. I had been in a car accident during my senior year of high school, and the subsequent bloodwork led to a “Dr. House-like” odyssey to find out why my creatine kinase levels were off the charts. I was asymptomatic at the time, played sports, and had a normal level of strength. “I wasn’t even an adult yet,” I said. “I went to college, put the diagnosis out of my mind, and didn’t think about it for five years.”

As if on autopilot, I told him how at age 21, I went for a run after work and pulled up tired; how in the next few months I kept going for runs and had to keep stopping earlier. I told him about my increasing difficulty with climbing stairs, my first fall on the sidewalk, and how I couldn’t even muster the strength to hit the rim, the last time I shot a basketball.

Minutes passed until I caught up to the present day, May 2012. I was nearly out of breath from the continuous narration, but I was satisfied that I had properly recounted my patient journey. I glanced over at my neurologist, who nodded softly and finished writing his notes.

Then he looked up and asked, “And, how has it impacted you emotionally?”

I paused – I had never been asked that at an appointment before!

Thoughts flooded into my head. What should I tell him? Should I tell him how I truly felt, or just speak generally? Deep down, I was glad he asked. I needed to share this burden with someone other than my family – who didn’t fully understand the extent of my suffering.

“Well,” I started, “it’s been difficult.” As soon as I said this, I could feel long-suppressed emotions bubbling to the surface. I didn’t cry that day, but I had to speak slowly to stay composed. Five minutes later, my neurologist knew all about my hopes and dreams, my deepest fears living with the disease, and how I worried whether or not I’d ever get married or live a productive, meaningful life.

At the end, I added a final somber thought: “I feel like I am barely holding it together these days.”

I looked over to gauge his reaction; he nodded and said, “Thank you for sharing that. I can appreciate what you are going through is not easy.”

When he said those words, it felt as if a weight was lifted off my chest. For the first time I felt like I was being treated as a person, and not just as a specimen with weakening muscles.

I think about that day often – it was the first time I felt like I had the support of a caring physician, who not only understood what I was going through, but who also wanted to actively help me cope with this disease.

The patient experience, as I’ve come to appreciate, is so much more than physical symptoms. I like to equate it to an iceberg, where physical symptoms are the 10% of the iceberg you can see above water. Patient experience – emotions, fears, dreams, frustrations – those are the other 90%, lingering beneath the surface but just as real.

The next time you see a patient, take a few minutes to ask them about their day. If they have a caregiver, ask them how they are coping, because caregivers are equally invested in the patient’s well-being, and often feel just as overwhelmed.

The questions can be simple, but when asked with tact and empathy, they can make all the difference between a discouraged patient and an empowered one – which may improve your ability to care for them, because empowerment breeds resilience and hope.

On that day, I finally felt like the doctor was in my corner. The rest, as they say, is history.

Experts by Experience is a collaboration between  Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author: Chris Anselmo lives in Connecticut and works as a market intelligence manager at the Muscular Dystrophy Association. Chris is the author of the blog, Sidewalks and Stairwells, where he writes about his experiences of living with adult-onset muscle disease. You can find him on Twitter at @Chris_Anselmo

I have become strongly ambivalent about digital technology for both health and healthcare (including social media, but especially Electronic Health Recods, AI and Big Data) – it offers so much potential, but the cost – embedded in its very nature – is progressively dehumanizing. And, unfortunately, right now, I believe things are getting worse.

The wonderful story you told is the flip side of all this – it’s the human side of medicine, of that very special interaction between two people, one based on trust, and hope, and caring. It’s value isn’t just theoretical, or “feel-goodness” – it’s practical – because when that level of trust exists, it helps the physician to use ALL of their experience to help someone. A specialist may have seen 50,000 neurology patients in their past, and apart from the textbook stuff – if this level of trust exists, all of that can be brought to bear on a unique patient, such as yourself.

Anyway, thanks for sharing your story – physicians sometimes get lost in the weeds of trying to get tests approved, or dealing with wait times, or the ever increasing burden of Electronic health records. Your story is a reminder of what it’s all about.

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