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Keywords: Participatory medicine, patient empowerment, patient-physician communication.
Citation: Kastner K. A participatory medicine journey. J Participat Med. 2011 Feb 15; 3:e9.
Published: February 15, 2011.
Competing Interests: The author has declared that no competing interests exist.

My journey toward participation: It was supposed to be just a routine ultrasound.

The technician came back with a doctor. Doc took a look and to the tech said, “Very thorough. Yes, I see calcifications.” Calcifications: Same word I heard in the context of a breast cancer diagnosis a decade before. Then Doc asked me, “Have you ever been involved in a trauma episode?” I was immediately flooded with the emotions of a recent anniversary which was indeed very traumatic. As I scrambled to focus on the doc’s meaning, he tried a different word, one that I understood right away. “Have you been injured?” “No,” I said.

I then summoned my courage: “What, may I ask, are you seeing?” At the same time, I was asking myself, “Why am I asking permission?” I realize it was because I was suspended in a familiar relationship pattern that thinks of the doctor as “Lord and Master,” and me as “just a peon patient.” Doc’s the one who’s supposed to know and take care of me; I just have to sit back and relax. Indeed, the Doc’s tone was reassuring: “A mass. Probably just a [what I heard was something like] hemoghrbled grmuonp. Nothing to worry about, but I’d like to get an MRI just to make sure.” One part of me wanted to believe the doc. Leave it in his capable hands and everything will be taken care of. And yet, whatever it was, it was suspicious enough to warrant an MRI.

I asked my next question which I knew to be too stupid for words even as the words issued from my mouth. That’s because it wasn’t the question I wanted to ask. What I asked was, “Will I be having an MRI today?” Stupid question because I know the answer and the Doc knew it to be a ridiculous question. He laughed. “Are you kidding? There’s a waiting list.”

What I really wanted to ask was: “Can you write down what you think it is?” I didn’t ask because the paternalistic pattern had robbed me of my courage. By asking, I might be labeled one of “those” annoying patients whose information-gathering was a waste of his time. Perhaps my asking could affect my place on the MRI waiting list.

Left alone to get dressed–as I put my robe in the robe-bag and put on my coat–I was all the while telling myself to “get the info while you’re still here, because it’s going to be such a rigmarole getting it later.” I scanned the line of patients in the waiting area. Not a health care professional in sight. I left without asking, knowing that, at my followup in a month, I would then get results and ask for a copy of the report, making sure to have them point out anything that needed to be highlighted.

Upon reflection, my takeaway: It can be hard to be a vigilant participatory patient. It can be fraught with emotions and fear of repercussion. Upon further reflection: It’s harder to be in the dark, googling everything that sounds like what I heard.

The result of the experience and reflection: Self-growth. Next time, my questions won’t require courage. They’ll be driven by the confidence that comes with self-knowledge. I’ll make sure I get what I need to know.

Now I’ll try to track down those words before the followup appointment and before the MRI. It’ll give me time to learn, absorb, and weigh options. Another step in my participatory journey.


Copyright: © 2011 Kathy Kastner. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.