Even Doctors Want This…

– Greg Kutcher, MD, JGP Medical Journey Strategist

“…I had to go out of my way to get many physicians to give me as much attention as I felt my illness deserved.”

“So, I got excellent medical care, but only because I was a partner in that care.”

“…I just appreciate the opportunity to tell my story, which for me, the opportunity to talk about it is very therapeutic.” (1)

The most respected medical journals periodically publish iterations of the story: “Doctor becomes a patient.” Like panning for gold, we find in them nuggets––call them flashes of the reality behind the curtain––that we all can use in our own medical journey.

“The Pragmatism of Hope,” (source) is an inspiring example. It is an interview with a neurologist about his own journey through the diagnosis and coping with ALS (Lou Gehrig’s disease).

As the interviewer writes, it is a story illustrating pragmatism and hope as two sides of the same coin.

Also––in a tone respectful of the fog and confusion of making a precise diagnosis as symptoms and clues only gradually reveal themselves––it chronicles the evolving relationships with doctors.

The themes running through it are the same as for every patient dealing with serious illness. One says: “I don’t want to feel like I am being categorized without exquisite attention to my unique situation. That means engaging with me.”

Another one says, “As a patient, I have to work at it to partner in my own care.”

And finally, “I need to share my story, because there is healing in sharing.”

The patient (who is a doctor) has a running start. As challenging as it is for them, they are not as intimidated by the system. It is easier to ask questions, to clarify, and to say, “This is what I need.” They can monitor, catalog, and “translate” their symptoms into language that their doctors can understand. And, with this comfortability, they are less likely to by numbed by the freeze, fight or flee response which can severely compress the ability to engage, think, or participate in decisions.

Patients need help in knowing and telling their story. They need help getting past the freeze, fight, or flight response so they can do the work of being a partner in their own care.

And they need someone to be a receiver of their story––because great healing can come from being heard.

The traditions, priorities and roles embedded in our medical system are not suited to meet these needs well. In fact, maybe it is too much to imagine that it could.

The idea of a journey guide is that patients will fare better when they have someone with them with the sensibilities and training, and whose role is not focused on fixing but on guiding.

– Greg Kutcher, MD, JGP Medical Journey Strategist

1) The Pragmatism of Hope. (2023). New England Journal of Medicine, 388(16), e55. https://doi.org/10.1056/NEJMp2301938