Cognitive dread: the painful uncertainty of waiting

by Carolyn Thomas      @HeartSisters 

I live on an island, so we’re often dependent on the ferries that carry islanders to the mainland and back. And because this is Canada’s west coast, high winds or rough seas can very occasionally cause sudden sailing delays or outright cancellations. When this happens, we often don’t know when sailings will resume, and nobody can tell us. Uncertainty like this about what daily life will bring includes both the routinely ordinary (what’s causing this traffic jam?) and the potentially important (when will my test results come in? This state of uncertainty is what psychologists often call “cognitive dread”.    .

Author Dan Mager describes uncertainty this way:

“We tend to want and need to see ourselves – and the world – as essentially solid, stable, and permanent, and through that lens of predictability we find comfort. So, when the bottom falls out, it usually creates emotional chaos that can easily morph into crisis.”

This emotional chaos can feel awful. Many of us would rather get the bad news now than become even more stressed while ruminating. I’d rather be told upfront that we’re definitely in for a four-sailing ferry wait, for example, than worry about how long that wait may or may not be. 

Pain research has also demonstrated that, when faced with a possibility of pain, most people want to get it over with as soon as possible.

When U.K. researchers, for example, asked their study volunteers to choose between electric shocks of different intensity occurring at different times, most of them chose to hasten the pain, and would even accept more severe pain to avoid having to wait for it.(1) 

In over 70 per cent of the tests, “participants chose to have the pain earlier, even though in half of the tests that meant a more painful stimulus.”

It turns out that the severity of the pain we feel is actually often influenced by many factors other than the severity of the cause of the pain. As I wrote in this 3-part series on cardiac pain, if you believe you are not getting the right care for your pain, you may likely experience more pain than usual.

And this trickster of the nervous system works both ways. Taking a pain pill that you believe will work, for instance, means that your sensation of pain actually begins to decrease even before the medication has time to be absorbed into your bloodstream.

But what if you suddenly realize that you’ve run out of those trusty pain pills? Because you now believe that you cannot get the immediate help you need, and – worse! – you’re uncertain about if or when you will be able to get that help, your nervous system pays more attention to those pain signals, and you will feel more intense pain.

This is why being misdiagnosed can feel so traumatic for patients.

Not being believed, or having our symptoms dismissed or ignored, or being repeatedly told by experts that “there’s nothing wrong with you” , or feeling uncertain about what’s happening  often leaves us feeling scared or abandoned. See also: Skin in the Game: Taking Women’s Cardiac Misdiagnosis Seriously

And without an accurate diagnosis, there can be no appropriate treatment plan.

Sharon Roman experienced her first medical symptoms at age 30. She wrote in the British Medical Journal (BMJ) about hearing her own life-altering diagnosis of multiple sclerosis for the first time:

“A diagnosis can be a revelation to patients. The pieces of the puzzle finally fit to form a picture. It brings a sense of relief; they have not been imagining or exaggerating their various symptoms.

“Although it’s a short-lived relief, as other emotions begin to tumble into the now vacant space: fear, anger perhaps at having felt trivialized, and more. It may even bring a sense of closure to the vicious game of chase with an unknown ‘it.’

At last, they are believable.”

For those who have been misdiagnosed, an accurate diagnosis can indeed feel like a relief – because no matter how bad the news, there will almost always be some kind of plan to replace the initial uncertainty. (See also: The Shock – and Ironic Relief – of Hearing a Serious Diagnosis“)

An interesting California study looked at another important aspect of uncertainty: whether, if given the choice, people prefer to hear good news or bad news first.(2) 

Researchers found that in situations where the news about to be given was mixed (“I have good news and bad news for you…”),  almost 80 per cent of those studied preferred to receive the bad news first. One observation was that they’d end up feeling better if they got the bad news out of the way, so that their uncertainty could be minimized.

Compared to the minority who wanted to first get the good news, the bad-news-first group reported not only feeling better, but less worried in general.

It’s important for both patients and their physicians to keep in mind that feeling temporarily relieved – especially if an accurate medical diagnosis has been a long time coming – doesn’t ever minimize the eventual reality of that diagnosis. With a chronic and progressive illness like heart disease, it can mean a significant adjustment to this diagnosis, and even to a whole new way of life. (See also: The New Country Called Heart Disease

Is there anything that we can do when we’re in a state of cognitive dread?

A study on the uncertainty of dread in the journal Science suggested that distraction can be a powerful tool to help us, because merely expecting an emotional event is an emotional event in itself.(3)  Actively drawing attention away from what we’re dreading may reduce the discomfort of the wait.

Dan Mager also offers three options for those of us trapped by an uncertain reality.

Allow yourself to feel. “You can be angry, anxious, resentful, or scared without having to act out on or suppress those emotions.”

Apply the Serenity Prayer* by identifying the areas you can control – and those you can’t.  “Becoming aware of where you do have some control or can make changes facilitates emotional balance.”

Practice patience and acceptance. “It’s the waiting in the hallway between one door opening and another closing that’s so difficult, and it takes awareness, skill, and practice to negotiate that wait.”

Image: Maike und Björn Bröskamp, Pixabay
  1. Giles W. Story et al (2013) “Dread and the Disvalue of Future Pain.” PLoS Comput Biol 9(11): e1003335.
  2. Angela M. Legg, Kate Sweeny.  “Do You Want the Good News or the Bad News First? The Nature and Consequences of News Order Preferences” . Personality and Social Psychology Bulletin, 40, 2014, 279-288).
  3. G.S. Berns et al. “Neurobiological substrates of dread”. 2006 May 5;312(5774):754-8.

*  The Serenity Prayer: “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

.

Q:  Have you experienced that sense of “cognitive dread” because of uncertainty?

. NOTE FROM CAROLYN:   I wrote much more about the uncertainty of waiting for a diagnosis in my book, A Woman’s Guide to Living with Heart Disease. You can ask for it at your local library or favourite bookshop, 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 20% off the list price).

NEW! COVID-19 virus update:  Read “Let’s all be palm trees together” in facing COVID-19, a guest post by Walk With a Doc.

11 thoughts on “Cognitive dread: the painful uncertainty of waiting

  1. This is such an interesting post – I didn’t mean to comment again after just a couple of posts. But Pain is an issue for me because I don’t have much and that makes me feel like I don’t really have microvascular disease.

    I know angina can manifest itself in lots of places and in lots of ways but it feels like because I have MVD I should have a lot more pain. I have plenty of SOB and fatigue and a bit of discomfort in my chest when I do a serious walk but basically I haven’t had the “pain” in the last 2 years tho I had the quadruple and the subsequent. I downplay it all because I don’t have enough pain.

    Your posts are so helpful, as is your book to remind me that I’m not alone.
    Thanks
    Ann W

    Liked by 1 person

    1. Hello Ann – lovely to hear from you again.

      I suspect that we all have this invisible measuring tape that we mentally whip out to assess our symptoms compared to others.

      Remember that section in my book about “one-upmanship” (“You think YOU have pain… let me tell you about MY pain…”)? There’s an inherent tendency to assess ourselves on some kind of hierarchy, compared to others (we’re either worse off or better off than). Like the old guy in my cardiac rehab class who asked me “What are you in for?” and when I started telling him that I’d had a heart attack and one stent, interrupted me to start telling me his far more fascinating story of his THREE STENTS!

      Instead, I think it’s important to just be okay with feeling the way we feel. Even from day to day that can change! When I first started taking workshops and classes in Pain Self-Management, I often had this profound sense that I didn’t quite belong there whenever I listened to classmates who were SO much worse off than I was, e.g. Who am I to complain when she/he is suffering so terribly? But there’s no Pain Fairy following us around giving out little Suffering Awards…

      Everybody’s experience is so different and so unique – not bigger or better, just different. And often very different from the way we used to be…

      You are definitely not alone, Ann!

      Like

  2. Thank you Carolyn,

    Re: Feeling Impending Doom

    I enjoyed your Heart-Smart Women Talk many years ago and remembered clearly how you were sent away with “indigestion”! The day of our January blizzard, my month long feeling of impending doom became crushing unstable angina. I walked into emergency confident that given my past episode with an angioplasty and family history of early heart attacks, I would be an easy triage patient and receive help. After seven hours of waiting, ECGs, an x-ray and blood work, I was diagnosed with, “most likely acid reflux and anxiety”!

    This misdiagnosis created extreme anxiety, but remembering your situation, I persevered. I denied any indigestion, explained that I had done poorly in a stress test 8 years ago and would like another one. I was told I could have one in about a week and was sent home.

    As I walked out into the blizzard, the cold sucked the breath out of me. After ten steps I felt like my heart was ready to explode. No way could I walk the three blocks home.

    Naturally the impending doom lasted for another week, with nitro spray giving me some pain relief. As expected, I failed the 15 minute stress test after 4 minutes. I was told I was being admitted into the cardiac ward immediately. Better not go home for a toothbrush!

    I agreed and told my delightful female doctor that I knew I was in trouble a week ago because of your training, Carolyn. She told me how impressed she was with your knowledge while doing hospital rounds with her. We had a chuckle.

    The angioplasty showed an almost complete blockage. I was lucky that the doctors were able to get a stent in place. A severe allergic reaction to medication the following day had me readmitted to emergency. Never the less, I appreciate that your training was instrumental in my dodging a heart attack and I will always be grateful.
    Sincerely,
    Jan Cadieux

    Liked by 1 person

    1. Holy moley, Jan! What a story! I’m dismayed that, despite your reasonable expectation that you would be an “easy triage patient”, you were sent home – misdiagnosed (after SEVEN HOURS in Emergency!?) This upsets me so much every time I hear of yet another woman who’s been misdiagnosed with acid relux and anxiety! As I like to tell Emergency staff, there are few things in life that are more anxiety-producing than being in the middle of a frickety-frackin’ HEART ATTACK! Of course we feel “anxious”. . .

      I would love to take full credit for saving your life, but it was your brave decision to stand up to the ‘experts” and insist on further testing that did it. This act of bravery can be very hard to do after somebody with the letters M.D. after their name has confidently misdiagnosed you – so GOOD FOR YOU, JAN!!!

      Thanks so much for taking the time to tell me what happened to you, although I do wish it had not happened at all, of course. But you’re now a role model for other women; your example can show others how it can be done.

      You were far braver than I was while I was being misdiagnosed back in 2008. I felt so embarrassed for making a fuss over “nothing” that I couldn’t get out of that ER fast enough! I wish more women would stand up for themselves as YOU did. I’m very proud of you!!

      Hope you are feeling much, much better now… ♥

      PS My next Heart-Smart Women talk (my 11th annual!) happens to be next week, February 18th at the Monterey Centre here in Victoria (in case you’d like to make a return visit this year!)

      Like

    1. Thanks, Judy-Judith! I have been thinking about this concept of dread for a while. I’m working on next Sunday’s post about the medical history of the known cardiac symptom we call “a sense of impending doom” (that’s the bigger, better form of dread!). Stay tuned…

      Like

  3. It took years for a correct diagnosis to be given to me for my Hypertrophic Obstructive Cardiomyopathy and a proper treatment plan initiated. I knew something was wrong, and got no support in pursuing a diagnosis from my PCP.

    The diagnosis was such a relief!!

    But as soon as a round of symptoms worsening, changing drugs and feeling relieved was over…. it seemed a new round began and my Self Doubt soared: Am I crazy? Is this really chest pain that needs reported? Is there another treatment my MD doesn’t know about?

    Definitely stressful.

    I found my practices of centering, meditating, accepting Life as a living, breathing, changing, growing experience…. without one single happy comfortable ending…. helps a lot.

    Life is a process, an ebb and flow. A common problem is that we see the flow as good and the ebb as bad… That would be like saying the space between our inbreath and outbreath is “bad”.

    Allow life’s ups and downs to flow through you, the stress is caused by our constant reaction that things should be different than they are…

    Yes to the Serenity Prayer!

    Liked by 1 person

    1. You bring up such an important point, Jill – that although finally hearing a long overdue diagnosis can and does feel like a relief, it is also often just the beginning of distressing treatments and more worry.

      The uncertainty of diagnosis is at last over, and then the work of learning to adjust – and then adjust again – begins. This is a skill that you’ve clearly found some useful tools to manage…

      Like

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