I don’t want to talk about it…

30 Aug

by Carolyn Thomas    @HeartSisters

When you get together with your girlfriends, are there any conversation topics that you believe are not open for discussion? Any that are off-limits? Any personal stories that you think are, well, just too personal to talk about to those women closest to you?

No, me neither.

Nowhere is this communication openness more visible than with our health. We generally like to share our medical news, updates on that medical news, and our opinions about each others’ medical news.  Health topics appear increasingly popular as we age (and thus have way more medical news to discuss).  It’s what my friend Dave likes to call “the organ recital”.  But when it comes to serious health conditions, do you ever wonder if all that sharing is necessarily a good thing?  Continue reading

No, really – patient education that’s actually useful!

23 Aug

by Carolyn Thomas  ♥  @HeartSisters

I think I’ve seen just about every “healthy lifestyle” informational brochure out there. You’ve seen them, too:  Eat better! Lose Weight! Quit Smoking! Get More Exercise! BlahBlahBlah!  None that I’ve found so far, however, mention anything that we don’t already know. Behaviour change is notoriously challenging – otherwise we’d all be doing it already.  It seems to me that the issue is not so much about raising awareness of something that isn’t well understood (Really? Smoking is bad for us?) but more about presenting information in a way that seeks to somehow meaningfully interact with the reader.

In my eternal quest for good solid take-home resources to hand out to the audiences at my women’s heart health presentations, I happened upon one – at last! – that caught my eye.  It’s called Living Well, simply sub-titled “tips for health and happiness”.
Continue reading

A letter to my pre-heart attack self

22 Aug

Dear Carolyn,

Duly inspired by CBC Wiretap’s How To Age Gracefully(a delightful farewell video letter to their radio fans, e.g. an 8-year old’s wise advice to a 7-year old), I’m sending this letter to my pre-2008 self.  Since my “widowmaker” heart attack that year, and subsequent ongoing cardiac issues, I’ve learned a thing or two about living with a chronic and progressive illness that I wish I’d known BHA (before heart attack).  I think I would have been a nicer and smarter and healthier person had I known these things long ago. So in no particular order, here’s my best advice to a long-ago me:
Continue reading

When a serious diagnosis makes you feel mad as hell

16 Aug

by Carolyn Thomas    @HeartSisters

Since returning from my 2008 WomenHeart Science & Leadership training at Mayo Clinic, I’ve spent a lot of time meeting, listening to, reading about, speaking with, writing for and hearing from countless other heart patients.  Once the dust settles following a cardiac event – that time my heart sister Jodi Jackson engagingly calls post-heart attack stun – I’ve observed that a recurring theme among so many of the freshly-diagnosed is a sense of anger at what has just hit them.

Here’s a fairly typical example.

A woman I met recently had spent decades making good health an important priority in her life, and then – WHAM! – a heart attack, out of the blue.  Her subsequent anger is hardly surprising: How could this have happened to ME, of all people? I’ve been doing everything right!  I never saw this coming!  And now you’re telling me that I’m stuck with this chronic and progressive medical condition for the rest of my life?!    Continue reading

Which patients does the “patient voice” represent?

9 Aug

by Carolyn Thomas  ♥  @HeartSisters

There are patients. And then there are patients. 

Let’s consider, for example, two friends of about the same age, same height, same size, same socioeconomic demographic – each one (in an amazingly freakish coincidence) a survivor of a similarly severe heart attack, admitted to the same hospital on the same day. Let’s call these two made-up examples Patient A and Patient B.

Patient A is diagnosed promptly in mid-heart attack, treated appropriately, recovers well, suffers very little if any lasting heart muscle damage, completes a program of supervised cardiac rehabilitation, is surrounded by supportive family and friends, and is happily back at work and hosting Sunday dinners within a few short weeks of recuperation.

Patient B, on the other hand, experiences complications during her hospitalization, recuperation takes far longer than expected, repeat procedures are required, her cardiac symptoms worsen, she suffers longterm debilitating consequences, and is never able to return to work.

Yet despite these profound differences, physicians would still describe both of these women with the same all-inclusive descriptor, “myocardial infarction” (heart attack).  Continue reading

The loss of ‘self’ in chronic illness is what really hurts

2 Aug

by Carolyn Thomas    @HeartSisters

People living with chronic illness already know that the triple whammy of ongoing physical symptoms, psychological distress and the discomfort of medical procedures can cause us to suffer. But when California sociologist Dr. Kathy Charmaz studied chronic illness, she identified an element of suffering that is often dismissed by health care providers.(1)

As she explained in research published in the journal Sociology of Health & Illness, a narrow medicalized view of suffering that’s defined as physical symptoms only ignores or minimizes the broader significance of suffering in a way that may resonate with you if you too live with a chronic illness like heart disease: Continue reading

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