Precarity: the perfect word for our times

by Carolyn Thomas      @HeartSisters   

I learned a terrific new word recently. The word is precarity, meaning the state of being precarious, unpredictable or uncertain. Any woman who is freshly diagnosed with heart disease already knows the precarity of life following a cardiac event – a reality that suddenly feels precarious, unpredictable and uncertain as we try to make sense of something that makes no sense. And after 19 months of navigating a global pandemic, we now know yet another kind of precarity.       .          .  Continue reading “Precarity: the perfect word for our times”

When we judge the poor the way we judge the chronically ill

by Carolyn Thomas    @HeartSisters

There’s an old joke about a woman who is successfully losing weight by following a very strict diet. But one day, her hubby returns home to find her sitting at the kitchen table finishing off a Hershey chocolate bar. He says to her: “Honey! You’ve been doing so great on your diet until now! How could you eat that chocolate bar?”

And her reply:

“You don’t know how many I wanted . . .”

That response sums up a profound message that goes beyond mere diet-cheating to how swiftly we rush to judgement based simply on what we see.  Mostly, we rush to judge other adults based on actions or behaviours that are none of our business (sometimes criticism is thinly veiled as “caring”I care about you so I have to mention the chocolate bar I see you eating. . . )  We judge others because they are not like us, because they make choices we wouldn’t, or because they make choices we might secretly want to make, too – but stop ourselves from doing.

Dr. Lisa Wade’s provocative essay on how we judge those living in poverty recently reminded me of how those living with a chronic illness diagnosis like heart disease can feel similarly judged.  Continue reading “When we judge the poor the way we judge the chronically ill”

Erin Gilmer: “Us” vs “them”: the under-served patient speaks up

by Carolyn Thomas  ♥  @HeartSisters

 I’m very sad to report that Erin Gilmer died on July 8, 2021. Rest in peace, Erin.

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I asked permission to republish this letter written by patient advocate and health policy attorney Erin Gilmer, who has lived in poverty brought about by debilitating chronic illnesses.

Erin offers a unique patient perspective in this letter to the organizers of the annual Medicine X conference at Stanford University.  After writing her letter, she was subsequently invited to speak at Medicine X 2014.  Although not well enough to travel to California in person after recovering from spinal surgery, she was thrilled when Medicine X organizers offered to put together an edited recording of her presentation to be shown to both live and online audiences on September 5th, 2014.  (Sadly, her video presentation is no longer available on the Stanford site, but this is a copy she sent me of the  letter to Medicine X organizers):

“Dear Medicine X Conference organizers,

“Your upcoming healthcare conference forum on under-served populations brings up a concern for me that I hope you will consider in the next few months.  The best way I can explain my concern is through this example:   Continue reading “Erin Gilmer: “Us” vs “them”: the under-served patient speaks up”

Why don’t patients take their meds as prescribed?

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by Carolyn Thomas  @HeartSisters

Compliant is one of those words that makes my skin crawl. It’s the word that our doctors use to describe good patients who take their prescribed medications exactly as ordered. The Teenage Cancer Trust’s Simon Davies in the U.K. once described the C-word (and its ever-so-slightly less patronizing alternative adherent) as words that “sound like they have punishment at the end of them.”

But for most physicians, both words mean the same thing: a serious health care issue. That’s because when patients refuse or stop taking the medicine their doctors have prescribed to help manage a serious medical condition, the consequences are often devastating.  From organ transplant recipients to those living with chronic diagnoses like diabetes, heart disease, epilepsy, HIV or Hepatitis C, those consequences can be swift and sometimes even fatal.  Continue reading “Why don’t patients take their meds as prescribed?”