This post has been shared by the AdvoConnection Blog. It was written with a patient-client audience in mind, but might be useful to you, too.
It is provided so you can find it in a search here at myAPHA.org, but you’ll need to link to the original post to read it in its entirety.
OK, But What’s the Question?
In my previous life as a speaker and writer on patient empowerment issues, I received email, even postal mail (meaning, yes, someone paid for a stamp!) from patients who were being challenged in some way by the healthcare system. Sometimes I would hear from 8 or 10 people in a week, 25, 30 or more a month. Their stories were often sickening and terrifying. At the least they were frustrating to read (even more so to live through, I’m sure) and at most their experiences had been life-threatening. And those were the ones that didn’t tell the tale of a loved one who had already died. People were desperate. They needed care or relief of some sort. But they either couldn’t find appropriate care, or they couldn’t afford what they were being told was necessary treatment. Sometimes their notes or letters were brief with just a paragraph or two. But most of the time they were quite long, very detailed, and too often, they just rambled. The record was an email – yes email – which seemed to go on and on and on. Just to see how long it really was, I copied the whole thing, then pasted it into a Word document. If I had printed it, it would have been 33 pages. Yes – desperation and great frustration. My heart broke for them all! What astounded me was this: the grand majority of the emails never contained a question. Looooong explanations of hurdles and wrong-doing. Frustrations outlined in finest details…. But I often was not sure why those folks had reached out to me. I didn’t know what help they were seeking. I didn’t know what to do for them, if anything. I had no idea what they expected of me. Maybe they just wanted me to sympathize. Maybe they just needed to know someone was paying attention? But it most always turned out they expected me to help them in some way. They wanted advice. They needed a helping hand. But – how was I supposed to know what they wanted if they didn’t tell me? I was never sure how to even respond except to write back and say, “I’m so sorry to hear your story. What are you hoping I can do for you?” What I wanted to say was “Hey! I can’t read your mind!” All this gets me wondering…. How often do…