Life before diagnosis: not as perfect as we recall?

~ Carolyn Thomas

by Carolyn Thomas  ♥  @HeartSisters

Like most of us, my time on this earth has been bookmarked by a number of important “before” and “after” experiences: the way I lived my life before key events occurred, and the way my life changed after they occurred. Before and after I got married. Before and after I became a mother. Before and after I ran my first half-marathon. But one of the most profound changes has to be before and after the fateful day in the Emergency Department when a cardiologist told me,“You have significant heart disease”.

Many of us living with a chronic and progressive illness like this often view these periods of life as two parts: the normal and wonderful times before the traumatic diagnosis, and all the not-wonderful days that have been happening ever since.      .

The more time I spend in this particular after period, the more tempting it is to look way back on those long-ago before days with rose-coloured nostalgia.

For example:

  • I live with painful refractory angina caused by coronary microvascular disease, so I recall those before days as always blissfully pain-free.
  • I live with long periods of crushing fatigue that require me to carefully plan every moment, each outing book-ended by napping like a preschooler, so I recall those before days as always blissfully active.
  • I live with great difficulty focusing or being alert as the day wears on, so I recall those before days as one blissfully endless game of late-night Trivial Pursuit (during which, of course, I crushed my opponents.)

But as the writer Marcel Proust wisely reminded us:

“Remembrance of things past is not necessarily the remembrance of things as they were.”

The reality, if I look hard at the unembroidered truth, is that like everybody else, I experienced plenty of periods of pain, exhaustion and losing at Trivial Pursuit during my first five decades of life.  Sure, far fewer periods than I now encounter these days, but I was certainly not immune to the basic ups and downs that all of us face.

It’s in that seductive rosy glow of nostalgia when I convince myself the good old days weren’t just “good”, but they were better than good.

They were PERFECT.

I like the way former law professor Toni Bernhard (author of three really good books about living with chronic illness, and a regular columnist in Psychology Today) recently advised her readers:

“Once in a while, I find myself ruminating about my ‘perfect’ pre-illness life. What a delusion! While there’s nothing wrong with enjoying fond memories of the past, it’s not the same as convincing yourself that life was perfect then – or even near perfect.

“Life wasn’t perfect before I got sick. It had its share of easy times and tough times, of successes and disappointments. When I put that ‘old’ life on a pedestal, thinking that it was perfect, I try to remember that this is a romanticized view of the past that serves only to make me feel bad about the present.

“When I find myself doing this, I try to get on with the day I’m in right now.”

There is, I should add, an alternative way to view “before” and “after” that seems increasingly popular.

This perspective suggests that a catastrophic diagnosis is actually some kind of gift from the universe that has somehow brought meaning and wisdom to my previously meaningless existence so that I can now live life to the fullest, almost as if my “after” time is actually superior to my “before” time.  See also: Does surviving a heart attack make you a better person?

This view implies that the “before” was actually worse than what we’re enjoying now in the “after”, embracing the newish 1990s concept of “Post-Traumatic Growth“ as explained in the journal Psychological Inquiry:(1)

“Post-Traumatic Growth is the experience of positive change that occurs as a result of the struggle with highly challenging life crises. Although the term is new, the idea that great good can come from great suffering is ancient.”

I don’t personally subscribe to the theory of Post-Traumatic Growth (because sometimes “great suffering” is simply suffering, not a noble life lesson meant to inspire others (as I wrote more about here). But at the same time, I know that my tendency to idealize everything that happened yesterday is not particularly helpful today.

It seems to me, now 11 years in as a heart patient with ongoing cardiac symptoms, that it’s about aiming for realistic balance on a path toward acceptance and adjustment. There are often losses associated with being diagnosed with chronic illness; it takes time and resolve to grieve them, to aim for “What is, is.” 

But as Toni Bernhard reminds us,

“Don’t fool yourself into thinking that life before chronic illness was always a breeze.”

♥

(1)  Richard G. Tedeschi, Lawrence G. Calhoun. Post-traumatic Growth: Conceptual Foundations and Empirical Evidence.  Psychological Inquiry: An International Journal for the Advancement of Psychological Theory. Volume 15, Issue 1, 2004. 

Q:  Are there some parts of your “before diagnosis” life that you especially miss?  Are there some that you don’t miss?

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NOTE FROM CAROLYN:   I wrote more about how heart patients often respond to a life-altering diagnosis in Chapter 7 of my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press, November 2017). Yes, that was the chapter that the anonymous cardiologist who reviewed the book before it went to print suggested was “irrelevant to female heart patients” and should be deleted. (I objected, and happily, Chapter 7 stayed!)  You can ask for this book 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.)

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See also:

The new country called Heart Disease

Experiential learning: How patients go from novice to expert

How we adapt after a heart attack may depend on what we believe this diagnosis means

“I’m not depressed!” – and other ways we deny the stigma of mental illness after a heart attack

Are you a victim or a survivor?

A heart patient’s positive attitude: a “crazy, crazy idea”?

The “loss of self” in chronic illness is what really hurts

“Smile, Though Your Heart is Aching”: is fake smiling unhealthy?

Read Nancy Stordahl’s brave and compelling memoir: Cancer Was Not A Gift And It Didn’t Make Me a Better Person

Published by Carolyn Thomas

12 thoughts on “Life before diagnosis: not as perfect as we recall?”

  1. What I miss most is exercise and travel…just walking off the stresses, or joining friends in a day in Wine country strolling the squares, the ability to garden, walk my dog….in addition to heart I have debilitating pain (fibro, migraines) and this last year after caregiving my beloved sister for over a year, she died of cancer.

    I had heart attack at 58, ten years ago, and have held on to thinking I could get better, but both my electrical and plumbing systems have gone south and was put on disability several years ago….

    I too am trying to follow the acceptance, more Buddhist path to contentment. Living side by side with suffering and gratitude for what I do have. I am so disappointed in Western Medicine, and am actively trying to find my own way, in particular spiritual and integrative medicine.

    I do believe food is medicine, and have seen some improvements since I have begun to focus on new ways of eating, meditation, and cutting out some of my medications. I have read and read Toni Bernhard, recently Dr Kelly Brogan, the science of fasting gurus, turned off the news, listening to Vivaldi and John Prine… all from bed… even starting bed yoga!

    Appreciate your emails, always!

    Thx for the listen!
    Suzie

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    Reply

    1. Thank you for sharing your unique perspective, Suzie. First, my sincere condolences to you on the loss of your dear sister. What an awful year that must have been for you, along with all of your health issues.

      You were, coincidentally, the same age I was when I had my heart attack, and I too had to apply for a disability pension after that. I look back on that experience as almost as shocking to me as having a heart attack. As you say, we hold onto thinking we’ll get better, often despite evidence to the contrary! I will never forget the day I learned that, after hiring a PR person on a short-term temporary contract while I was in the hospital and recuperating, my boss hired a full-time person to replace me. He knew before I did that I was never going to be able to return.

      I especially like your day-to-day examples of what DOES help (turning off the news! I bet most doctors don’t prescribe that one!) And in fact, I’m going to go listen to some John Prine right now. Have a good day, Suzie…

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        1. Oh, I meant to concur that applying for disability was humiliating and took me almost three years. The worst part was the schizophrenia of feeling like I couldnt encourage or celebrate any improvements because I was fighting to prove how sick I was…not to mention how I had to fight for every level of documentation, lost files while having to share a huge chunk of change $$$ to lawyers who I engaged to help.

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          1. i know! It’s a dreadful scenario, really. Basically, it’s like their bureaucrats are saying “We don’t believe you!” and are keeping a suspicious eye on you for any sign that you might actually be improving. My thick application package came with an Appeal form right on top, clearly implying that my application would be denied, and that I’d have to appeal that decision, all during a terribly stressful time – physically, emotionally and financially. It’s a nightmare!

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  3. I would say the part that I miss the most from my pre-cardiac life is a reliable level of physical energy to complete ordinary tasks of daily living. Although now I can blame age along with my cardiac conditions since, at age 70, I am almost 20 years into my multiple cardiac diagnoses.

    What is amazing to me is how long it has taken me to accept my self as exactly as I am and to realize that I am not a defective human being because I can’t “do” what I “did” when I was 50 years old. Life, to me now, is more about “Being” than “Doing”. I am no longer in competition with others or my former self. I just am and days are not “good” days or “bad” days because of my physical condition.

    One of my Spiritual teachers from India used to say “Enjoy the consistency of my inconcistency”

    Why do we expect or even desire that today be like yesterday? It never is, there are no two days that are ever alike. So, it is up to us to find our joy in the day, no matter what the circumstances…Even if it means having a da*n good pity party and enjoying that!

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    1. Beautifully said, Jill. You’ve been at this heart stuff longer than I have, but I find it interesting that it DOES seem to take such a long time for us to arrive at that point where we don’t feel the need to fight that “inconsistent” reality of our day-today lives. Love the concept of life as more about BEING than DOING. Thanks for this…

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  4. Carolyn, I always enjoy reading your blog. You touch on subjects that hit close to home. I was wondering if you could recommend a good online women’s heart group where we can share stories and trade information. Thank you

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    Reply

    1. Hi Kathy – I found Inspire’s WomenHeart Connect very helpful. Over 36,000 members worldwide, women living with heart disease, free to join, and open 24/7!

      I’ve noticed, however, that far more religious and ‘magic cure’ diet posts are now posted compared to when I first joined in 2008 – which detract from the unique purpose and credibility of this site. But in between, lots of good solid lived experience on almost every possible cardiac diagnosis. You can also search Facebook for a number of their groups, open or closed, many of which are specific to certain diagnoses (e.g. SCAD, coronary microvascular disease, heart failure, etc.)

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