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 we patients and caregivers get frustrated with the system, specifically medical providers like doctors, nurses, and others, because they don’t give us the information we need? It’s so easy to get upset with them, angry, and to blame the system for its lack of ability to help us! We expect them to listen to us complain, but what do we expect them to do in reply?
Is it possible we aren’t being clear about what we want and need? Is it possible we aren’t asking the questions? Is it possible that help isn’t forthcoming because they don’t know what we want and expect?
Do we expect them to read our minds?
Yes – all that is possible. And, I suspect, probable.
So that’s today’s advice: Be clear! Be specific! Ask your questions. Share your expectations.
If you find this difficult to do – clarifying your needs, and sharing your expectations, then it’s time to get a patient or health advocate involved. He or she can help you find the clarity you need so you can get the answers you seek.
Just don’t ask your providers – or any part of the system – to read your mind.
- You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve)
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