Invisibility Is Not A Natural State

“We need to raise our voices a little more, even as they say to us,
‘This is so uncharacteristic of you.’ Invisibility is not a natural state for anyone.”

After each of our SpeakSooner community education programs I would ask myself, “How did this program differ from the one before? And, what was the take away?” I often wonder if others ask themselves the same questions.

What brought this to mind was an e-mail I received from a hospice social worker who often attends our community programs.

“I have to remind myself,” she admits “that [patients] repeating back what has been heard does not equate with understanding. The participants in your video emphasized how much is said that they can’t take in or grasp. When doctors communicate a complex diagnosis and treatments and side effects, how do they know if their patients received the information and if there has been understanding? How often, have you heard I didn’t know … I wish I had known…” She notes.

“Too often!” I hear myself cry out.

“I know,” she goes on to say, “that doctors do ask patients if they have any questions but they don’t know what questions to ask.”

I remind myself what the research states—the flood of emotions that come with bad news causes patients to feel overwhelmed and not hear complete sentences.

“I know why you do what you do and why you created the [Difficult Conversations Toolkit (Video & Workbook) and your focus on building a team is so critical. I often wonder though, how one creates that when they are not as articulate as the patient on your panel and there are few friends or,family or resources. I know there were several in the audience who struggle with that…”

“But it didn’t stop them from coming…”

“We just needed another hour for discussion! Hence, more presentations—as the need is clear!”

So, as I prepare for our next SpeakSooner program on July 12 hosted by the Vermont Center for Independent Living, I’m once again thinking about how this program will differ from the others and what will be the takeaway. For those who live with disabilities and may struggle with articulating their questions, I’ll be sure to remind them to let healthcare providers know “I need your help,” which, illustrates the vulnerability of patients and the expertise of doctors. And, in so doing, humanizes the medical encounter.