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Pain vs. suffering: why they’re not the same for patients

19 Feb

by Carolyn Thomas      @HeartSisters

I’ve written a lot (here, here, and here, for example) about cardiac pain, because I live with a lot of cardiac pain called refractory angina due to a pesky post-heart attack diagnosis of coronary microvascular disease. This pain varies, but it hits almost every day, sometimes several episodes per day, and it can feel very much like the symptoms I experienced while busy surviving what doctors call the widow maker heart attack in 2008.

But there’s pain, and then there’s suffering. The two are not the same.

I spent many years working in the field of hospice palliative care, where we all learned the legendary Dame Cicely Saunders‘ definition of what she called total pain”.(1)  This is the suffering that encompasses ALL of a person’s physical, psychological, social, spiritual, and practical struggles. Although addressing total pain is an accepted component of providing good end-of-life care for the dying, the concept seems to be often ignored in cardiac care for the living. Continue reading

If you’re clueless and you know it . . .

12 Feb

I am clueless about many things. As in the definition: “Lacking understanding or knowledge.” As in the sentence: “I have no clue!” As in the 20+ years I spent living with a research scientist and enduring mind-numbingly torturous dinner party conversations about zinc and copper sediment in the Fraser River estuary.

That kind of clueless.
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A plea for the return of the classic bed jacket for patients

5 Feb

Hospital patients make an immediate trade that none of us want to make. The non-negotiated trade goes like this: We’ll take away (or, in some cases, cut off) your own nice clothes, toss them in this plastic sack, and in exchange, we’ll let you wear this shapeless, backless hospital gown and some goofy-looking booties while you’re here.

This is a trade designed for hospital workers, not for patients. But herein I launch my one-woman campaign to consider a revisit to the timeless yet under-appreciated garment called the bed jacket in order to combat the hideousness of those much-hated hospital gowns. Continue reading

Please! No more bragging about mountain climbing!

29 Jan

by Carolyn Thomas      @HeartSisters

One of the things I love most about writing this blog is hearing directly from my readers. I already knew that Heart Sisters attracts the smartest, funniest, and wisest readers ever, of course, but this comment from Charlotte in response to one of my articles really struck a chord for me. I’ve written before about this particular issue (i.e. why trotting out all those “inspiring” survivors to talk about their amazing post-recovery achievements can actually leave me feeling not so much inspired, but inadequate). Here’s how she says it so much better. (Thank you, Charlotte!) Continue reading

Two big factors that can impact a patient’s loss of ‘self’

8 Jan

by Carolyn Thomas    @HeartSisters

When California sociologist Dr. Kathy Charmaz studied the subject of suffering among those living with chronic illness, she identified an element of suffering that is often overlooked by health care providers.(1)  As she explained her findings:

“A fundamental form of that suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones.

“The experiences and meanings upon which these ill persons had built former positive self-images are no longer available to them.”

Dr. Charmaz also found that this profound sense of having lost the “self” you used to be before being diagnosed is generally the result of both external and internal influences on how we view ourselves.  Continue reading

Experiential learning: How patients go from novice to expert

1 Jan

by Carolyn Thomas    @HeartSisters

Unlike the professionals I know in the field of cardiology (the ones who decided they really wanted to spend many, many years of their lives studying All Things Cardiac), people living with heart disease are thrust unwillingly into an intensive overnight learning immersion program. We go from being utterly ignorant to, little by little, becoming increasingly familiar with even the most complex information on the subject of our own diagnosis. As one of my Heart Sisters readers told me she had astutely reminded her physician: “This is your career, but it’s my life.”

And this seems to be true no matter what the diagnosis. I know that, had I been diagnosed with lupus instead of heart disease, I’d be blogging and speaking and writing about lupus right now.
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