What this heart patient wants for Christmas is NOT in a gift box. . .”

by Carolyn Thomas     ♥    @HeartSisters 

My family tells me I’m “impossible” when it comes to picking out a gift for me. I am rarely able to offer them even a single helpful hint. Instead, I plead with Santa every year not to bring me “more stuff”. I don’t want stuff. One only has to visit the average yard sale to witness the inevitable future graveyard of all that stuff. Aside from absolute necessities of life (like groceries or my paper crafting supplies), there are few things I now need or even want.

Well, there are some things that I do need and want, but none come from a store or a gift box. I’ve been focused mainly on one such wish list item these days: feeling safe.  (Are you listening, Santa?)       

“I want to feel safer in an unsafe world.”  We live in a time when truly terrifying global news headlines are the rule, not the exception. Deadly combat zones, environmental disasters too close to home, political insanity  – does it sometimes seem that the ability to feel confident about the future – or even to make plans for the future – is seriously threatened?

I wrote recently here about threats to my sense of personal safety (due to an unhinged upstairs neighbour, police involvement and the need to temporarily move out of my home into my daughter’s guest room). For the first time ever, I no longer felt safe in my own home.

In response to my situation, thoughtful comments from my readers began to come in – like Susan for example, who wrote that she too had been“tormented”  by a “crazy and dangerous” neighbour in the past. She had to pass by this man’s apartment every day to get to their building’s elevator because she couldn’t carry her elderly dog down the stairs.The police had been called to her home “on so many occasions”. Yet she was also able to add:

“I finally found another place to live that I love! I have the nicest neighbours now, and am so happy that the dangerous neighbour can’t harm me or my dog anymore. I was lucky I found a way out of there.”

Beth, another reader, also shared her own story of feeling unsafe:

“Long ago, I had a stalker follow me everywhere for years. He became obsessed and the police – and eventually the courts – got involved. There was no sense of safety, and it took years for me to feel safer – never safe, but safer.”

That phrase stayed with me:  “never safe, but SAFER.”  It struck me that being able to feel “safer” is just what I’m now hoping for – simply to feel safer than I have been every day since mid-November when my neighbour’s first frightening rampage occurred. Suddenly, out of nowhere, I felt utterly unsafe in what I call the “tiny perfect home” that’s been my cozy and comfortable haven for almost 17 years.

And as the experts at the Centre for Studies on Human Stress at the University of Montréal explain:

“Ongoing stress that involves the release of stress hormones like adrenaline and cortisol means that the mere act of anticipating stressful situations can be worse than actually being in one – because you can ruminate about it endlessly in advance, the whole time secreting those dangerous stress hormones.”

This may also feel familiar to those who have faced a serious health crisis – like any type of cardiac diagnosis.

The Centre for Studies on Human Stress reminds us that stress can be either acute or chronic:

♥ Acute stress results from specific events or situations that usually involve novelty (it’s all new to me);  unpredictability (I didn’t see this coming); a threat to the ego (my decisions or abilities are being questioned); or leave me with a poor sense of control (I don’t know how to stop this!)

Feeling acute stress is ‘on the spot’ stress, which is Mother Nature’s weirdly surreal trick that can sometimes actually be good for us because the sudden release of stress hormones can help our mind and body deal swiftly with a specific ‘fight or flight’ situation (e.g. swerving quickly to avoid a car accident).

♥ Chronic stress results from repeated exposure to situations that lead to the release of stress hormones. This type of stress can cause wear and tear on our minds and bodies. Most scientists believe that our stress response system was NOT designed to be constantly activated. Don’t get me started. . .

In some cases, a sudden unexpected episode of acute stress can sometimes morph into ongoing chronic stress if the culprit stressor is not stopped. I have never known what it’s like to NOT feel safe in my own home – until last month when this nightmare started.

When we feel unsafe even at home, it means we might sense danger everywhere and anywhere – even where little if any danger actually exists. It’s this threat of danger that I’m reacting to. Even walking through the lobby of our building can cause a profound sense of dread, anxiously looking left and right for any signs of the unhinged neighbour following me.

My need to feel safer lately is also behind a number of other acute and chronic stressors I’d like to stop worrying about.

These, in no particular order, include the following:

1. “I want to feel safer about the threat of COVID-19.”   I’ve made it through  three years of carefully following public health safety protocols for vaccinations, booster shots, wearing masks, social distancing, handwashing, you name it – and (unlike most of my friends and family) –  no COVID! I’d like to believe this pandemic is over – except for the people I know who have been recently hospitalized with it. Please, Santa – make this go away. . .

2.  “I want to feel safer about misdiagnosis of women’s heart disease.”

Female heart patients are still at significantly higher risk of being under-diagnosed (and worse, under-treated even when appropriately diagnosed!) compared to our male counterparts. Yet I’m not aware of any country (including Canada, where I live) that requires mandatory reporting of diagnostic error. Q: how can you fix something that is not even measured? No need to document, no routine case review, no discussions at Grand Rounds, no opportunity to teach lessons learned to medical students. Other workplaces are light years ahead of medicine in considering adverse workplace events as public safety issues. Dr. Gordon Schiff, at Boston’s Center for Patient Safety Research at Brigham and Women’s Hospital, for example, recommends “a national database in which patients and physicians could detail the onset of symptoms, when the diagnosis was made, whether it was found correct, and if not, why not, and all that followed – so learning could advance outside the arena.”(1)

And Harvard researchers recommend that “the way to reduce diagnostic error must be to foster a culture in medicine that recognizes patient safety challenges and implements viable solutions – instead of harboring a culture of blame, shame, and punishment.” (2)

3. “I want physicians to believe women when we tell them we’re sick.“  Despite ongoing research confirming a pervasive gender bias throughout medicine, including in cardiology, many docs appear to be dismissive and even downright annoyed by research findings suggesting such implicit bias exists. See also: “There Is No Gender Bias in Medicine. Because I Said So” .  While we’re waiting for Santa to give all women this gift of respect next Christmas, we need only to look at the American Journal of Preventive Cardiology’s report called: Addressing the Bias in Cardiovascular Care:  Missed & Delayed Diagnosis of Cardiovascular Disease in Women.(3)  

4.   “I want doctors to stop telling patients that their hearts are FAILING.”  I don’t care what the replacement name for this diagnosis becomes, I just want doctors to stop using the name heart FAILURE!”

As the late great pioneer cardiologist Dr. Bernard Lown often warned his colleagues, doctors should never deliberately use words that hurt.  Where I live, three of our regional hospitals have renamed their Heart Failure Clinics as Heart FUNCTION Clinics.  That’s a start – but only if the staff inside those clinics are not still telling patients out loud with a straight face: “You have heart FAILURE!”  The clinic names, their signage, their conference/society/medical journal names (e.g. “The Journal of Cardiac FAILURE”) – all of them MUST change.

I’ve been lobbying for this correction for years, along with a growing number of thoughtful cardiologists, I’m happy to say. Harvard cardiologist Dr. Lynne Warner Stevenson, for example, also wants to see the end of the name heart FAILURE, as she warned her colleagues at the 4th World Congress on Acute Heart Failure in Paris:

     “We have to call it something else! The term ‘heart failure’ denotes a hopeless defeat that may limit our ability to encourage patients to live their lives. Words are hugely powerful.”

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I’m hoping that Santa will deliver some good news about change by next season.  And while we’re composing our 2024 wish lists for Santa, learn what the Centre for Studies on Human Stress recommends to help us practice stress management strategies.

♥

Meanwhile, no matter how different this year’s holiday season may feel compared to any other year, I hope you’ll take many moments to enjoy the magical lights, music, traditions and spirit of what you enjoy about this special season with those you love.

Take care, and please stay safe this holiday. . .

♥

1. Newman-Toker DE et al. “Rate of diagnostic errors and serious misdiagnosis-related harms for major vascular events, infections, and cancers: toward a national incidence estimate using the “Big Three.” Diagnosis (Berl). May 14, 2020.

2. Lin Shen et al. “Harnessing Event Report Data to Identify Diagnostic Error During the COVID-19 Pandemic“,  The Joint Commission Journal on Quality and Patient Safety, 2021.

3. Heather M. Johnson, Celina E. Gorre, Amy Friedrich-Karnik, Martha Gulati, “Addressing the Bias in Cardiovascular Care: Missed & Delayed Diagnosis of Cardiovascular Disease in Women“,  American Journal of Preventive Cardiology, 2021.

 

Holiday Book Sale:  My book is called A Woman’s Guide to Living With Heart Disease (Johns Hopkins University Press). You can ask for it at your local bookshop (please support your favourite independent bookseller) or order it online (paperback, hardcover or e-book) at Amazon  – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).

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Q:  Is there something on your own wish list this holiday season that doesn’t come in a gift box?

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