Truth in Empathy

The power of finding truth about people living with chronic illness

· first-person

Chantelle Dion shares her perspective on the power of finding truth about people living with chronic conditions through empathy. As a designer at Throughline, she brings her lived experiences as a person living with an invisible illness to our work each day.

At Throughline, we believe in the power of stories. Throughout hundreds of studies involving people playing diverse roles in healthcare across the globe, we’ve seen firsthand how powerfully stories express what people consider to be true about themselves and their lives. To detect this truth in stories, though, we need to not just hear what people say; we need to listen to what people mean by the stories they tell. As the old adage goes, “Hearing is through the ears, but listening is through the mind.”

Finding truth in empathy: 

Listening with our minds, not just our ears, requires that we set aside our personal perspectives temporarily in order to adopt the vantage point of the story teller. By imaginatively putting ourselves in their shoes, we position ourselves to better comprehend their truths. There’s an undeniable power to the kind of truth that becomes real to us when we imagine another’s experience from their perspective.

As a person living with an invisible chronic illness, finding truth in patient stories is especially important to me. I feel a deep obligation to truthfully represent people living with illness in our work. Frankly, it’s why I work in healthcare and why I’m passionate about my role at Throughline. At Throughline, we represent the stories of people living with illness to our clients and advocate for patient truths. It’s important work, but it’s also tricky stuff, especially when we haven’t personally experienced the illness we’re trying to understand.

Deeply listening to people tell their story: 

Stories are powerful—they map another person’s reality. Of course, they don’t tell us everything. Maps are not territories—they represent them. Stories are built from samples of a person’s experience. That’s part of their power. What a person includes in a story—and what they don’t—reveals their priorities, perspectives, motivations, assumptions, and emotions i.e., truth as the person sees it. To see these dimensions of a story requires empathy, and empathy makes room for a deep kind of truth.

How to listen and empathize: 

Listening to stories in a way that opens up space for truth in research requires a few things we can start doing immediately:

  • Avoid role-person confusion: The term “patient” refers to a social role people play, not the kind of person they are. By talking and thinking about people as “patients,” we subtly and inadvertently de-humanize them, thus short circuiting empathy. Instead, using human-centred language like “person with condition X” is a way to empathetically orient ourselves and those we speak with. Using traditional industry lingo, like ‘patient,’ can instead lead us down a depersonalized path that obscures these important, deeper truths.
  • Be a story midwife: Not everyone tells a story following the “beginning, middle, and end” structure of narratives used in literature and films. We may need to help others formulate their experiences and perspectives as these familiar kinds of stories. For details, tell folks to say more or make connections between one topic and another. Not all stories are delivered fully packaged. Sometimes we need to help give birth to them.
  • Remember that it’s really hard to live with a condition: People with illness live in a world that is not always kind or easy on them. Stigma, marginalization, shame— many of the folks we engage in project work have been through serious trials and tribulations. Empathy honours these experiences and cultivates rapport to increase our chances of discovering the truths of life with illness.

Professionally, I believe we need to reinforce the importance of empathy in our work. It just makes our work better. Personally, I believe we have a responsibility to our clients to ground our ideas and insights in truth. In turn, we have a responsibility to really listen to patients and represent their truths as powerfully as we know how. In a real way, a big part of the business we’re in is finding and communicating truth in empathy.



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