Well, maybe it wasn’t the hard way for *me*, but it was a hard lesson nonetheless.

When I was in my early 20s, my maternal grandmother (the Admiral’s wife) had a serious health event that involved hospitalization, and fear that she was at death’s door. The cause turned out to be not heart failure, not a stroke, not peripheral artery disease, not “old age”, but … pharmaceutical assault.

This assault was perpetrated by her trusted family doctor, one she’d been seeing for over a decade. When we pulled open the drawer where she kept her medications and found more than 40 bottles of pills – all current scripts – we figured out pretty quickly what the disease was that we were dealing with. Stupidity.

She recovered, and lived another nine years – until the last minute, she was entertaining, cooking, enjoying life, and taking only a few meds.

Lesson learned: drugs interact with each other, and in an even more scary way than the recreational drugs I was familiar with had interacted on many of my friends …

Fast forward 25 years, and my parents – the Admiral’s daughter and the dashing fighter jock – were battling a couple of health issues. Daddy had Parkinson’s disease, Mom had had a pituitary tumor that had been removed, but that missing pituitary gland had put her on a cocktail of endocrine management meds that had to be delicately balanced to ensure that she didn’t wind up in a permanent sinking spell.

I found myself advocating for both of them at various times for equally various reasons, but my hard lesson there was this: unless someone is advocating for you, you could easily wind up dead, or crippled.

I discovered that all the years I’d been researching news topics were right handy when it came to knowing how to find out – fast – what a diagnosis or prognosis meant, and to be able to pick up terminology and jargon after hearing it only once.

All nurses thought I was  a doctor. Most doctors thought I was a doctor. I started getting much more information once that was in play.

And that’s a really crummy lesson – unless healthcare thinks you’re an insider, you’re treated like a meat puppet.

That attitude is starting to shift, but the pace of that shift still feels pretty glacial. Until all doctors treat all patients in a way that recognizes their humanity, and their right to know what’s happening to their bodies during all treatment options, there are still millions of hard lessons to be learned.

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I learned about patient advocacy the hard way
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4 thoughts on “I learned about patient advocacy the hard way

  • April 17, 2012 at 9:37 pm
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    I think too many of us learn about patient advocacy this way. 

  • April 18, 2012 at 12:14 am
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    Love this post. How is it that you got docs to think you were one of them?  Does your advocacy work for yourself? I fight the system constantly. I get the wrong meds or no meds when I NEED meds. My pituitary tumor when undiagnosed for years until FINALLY I had enough symptoms to warrant my arm-waving and test-demanding.
    Honestly, I am SO exhausted being my own advocate. And I am only 48.
    Any tips, Hints, Ideas? I am willing to listen!
    Thanks for sharing your experience.
    Lori
    misdiagnoseme.wordpress.com

  • April 18, 2012 at 8:32 am
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    Thanks for asking, Lori – my mother’s tumor went undiagnosed for close to a decade, so you are not alone there. She was in London, I was in NYC, during her dx and surgery, but I asked a leading health & science reporter to tell me what treating a pituitary tumor might involve (he was also an MD) – that was my first “interview the doc” experience.

    One of the things that makes it easier for me to “blend” is that I’m a trained actor – I can be/become many things. Combined with my interviewing abilities, and my talent at picking up context and buzzwords quickly, that makes me adept at adaptive coloration.

    I’d recommend building a set of interview-like questions to use at medical appointments, and only work with clinicians who welcome a collaborative approach and communicate well with you. Joining advocacy groups can help you pick up tips and recommendations for specific conditions.

    Like everything, it’s a process. Don’t stop being fierce on your own behalf. 

  • April 18, 2012 at 8:33 am
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    I agree. I also think that the more of us who stand up on our hind legs and bark in the face of obfuscation, the faster the speed of change will be.

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