An Anniversary, Meltdowns, Blessings, and Fuel for Advocates

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An Anniversary, Meltdowns, Blessings, and Fuel for Advocates

Please indulge me today. I’m going to share a very personal experience I rarely think about anymore, in hopes it will propel some good advocacy. Sometimes months go by when I barely give it any thought. Other times, like lately, it seems like everywhere I turn, I just can’t escape it. So here you go: It’s the topic of misdiagnosis, my 2004 experience, the emotional trauma, and then, the blessings of joy and gratitude that have resulted. It’s those blessings I think we can all learn from. June 30th (just a few days from now) is the anniversary of the heinous misdiagnosis I suffered in 2004 that caused me to change directions in my life and career. While early-on the experience weighed heavy on me – constantly – today I don’t think about it unless something pops up to remind me. It’s those reminders that have triggered the rest of this post. For weeks, they have been everywhere. Two weeks ago, for our APHA Expert Call-in (teleconference), our guest was Io Dolka of Greyzone, who spoke on the topic of misdiagnosis. She taught us about the causes, the outcomes, the danger, the egos, the mistakes, and all the negative worlds that collide to cause (at least) one in ten patients in the US to be misdiagnosed each year. Those misdiagnoses cause PREVENTABLE DEATH (yes, death) for thousands of Americans, and tens of thousands more to SUFFER PREVENTABLE HARM annually (yes, each year!). Then she gave us good tools to help prevent our clients from being misdiagnosed. Informative, useful – and so important for advocates to understand. Please pause a moment, and notice those words:  preventable deaths, and preventable harm – because the doctors and testing labs make diagnosing mistakes. I guarantee it has happened to you, or a loved one – and if it didn’t cause death, you may not have even realized it. But that doesn’t make it any less of an error, nor any less dangerous. My own experience was a cancer misdiagnosis – being told I had a terminal form of lymphoma, with only a few months…


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