“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
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
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
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
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