Looking for meaning in a meaningless diagnosis

16 Jun

by Carolyn Thomas  @HeartSisters

“That which doesn’t kill you makes you stronger.  If you tell yourself you feel fine, you will. Don’t cry over anything that can’t cry over you.  When life hands out lemons, squeeze out a smile.”

Translation:  Blah blah blah . . .

Here’s one I like better:  “Sometimes bad things happen to good people.” Period. End of story. As I’ve written here before, there is no Fair Fairy in life.

It is indeed tempting – and common – to spout trite platitudes designed to somehow make people feel better about those bad things with bumper sticker pop-psych. But can platitudes really lend meaning to a life-altering health crisis?

Consider author Mark Dery‘s take on this question as he struggled to find some semblance of meaning in his profoundly traumatic diagnosis of a rare cancer, and then as he was “poisoned by the cure that felt as if it was killing me.”

Dery, the author of the book I Must Not Think Bad Thoughts, says he doesn’t buy axioms like God doesn’t give us more than we’re able to handle (and clearly this is just not true!) – or that his diagnosis is a meaningful life lesson that’s somehow going to make him into a better person. For example, he writes:

“Every patient has a personal answer. Mine is the existentialist’s koan: the answer is that there is no answer. My first impulse is to say that diseases are object lessons in the capriciousness of the cosmos – the unpredictability of life, its random unfairnesses.

“Our insistence that things must have meanings and morals impels us to turn our sickness into metaphor and narrative; to demand something deeper from it than purposeless pain.”

This existential search for meaning in illness is relentless in medicine, as author Barbara Ehrenreich has observed, writing in The Guardian about her breast cancer diagnosis: (January 2, 1010)

“The first thing I discovered as I waded out into the relevant websites is that not everyone views the disease with horror and dread. Instead, the appropriate attitude is upbeat and even eagerly acquisitive.

“But, despite all the helpful information, the more fellow victims I discovered and read, the greater my sense of isolation grew. No one among the bloggers and book writers seemed to share my sense of outrage over the disease and the available treatments.

“In the mainstream of breast cancer culture, there is very little anger, no mention of possible environmental causes, and few comments about the fact that, in all but the more advanced, metastasized cases, it is the treatments, not the disease, that cause the immediate illness and pain.

“In fact, the overall tone is almost universally upbeat. The effect of all this positive thinking is to transform breast cancer into a rite of passage – not an injustice or a tragedy to rail against but a normal marker in the life cycle, like menopause or grandmotherhood.”

Ehrenreich quotes a woman who once wrote this to holistic health guru Deepak Chopra after her breast cancer had spread to her bones and lungs:

“Even though I follow the treatments, have come a long way in unburdening myself of toxic feelings, have forgiven everyone, changed my lifestyle to include meditation, prayer, proper diet, exercise, and supplements, the cancer keeps coming back.

“Am I missing a lesson here that it keeps reoccurring? I am positive I am going to beat it, yet it does get harder with each diagnosis to keep a positive attitude.”

And here’s Chopra’s insufferably glib response:

“As far as I can tell, you are doing all the right things to recover. You just have to continue doing them until the cancer is gone for good.

“I know it is discouraging to make great progress only to have it come back again, but sometimes cancer is simply very pernicious and requires the utmost diligence and persistence to eventually overcome it.”

EARTH TO DEEPAK (in the words of the astute Salon writer Mary Beth Williams):

“Telling people with cancer that they need to be strong and have a good attitude is insulting. Believe me, strong, optimistic people die every day.”

And such relentless emphasis on the need for unfailing positivity even in the face of severe illness – and even more debilitating treatments – can wreak havoc on an already anxious sick person with distressing symptoms, for whom a recurrence or decline in condition may feel like a personal failure instead of what it actually is, which is, often, just reality.

As Mark Dery suggests, in response to the eternal quest to find meaning in the meaningless:

“What those who’ve never spent a day in the hospital want to ask those of us who’ve been to the kingdom of the sick and back – or would want to ask, if it ever occurred to the average Baby Boomer that he may not die on his rollerblades or midway through the tasting menu – is:

“What did your trip to the night-side of life teach you? How did it change you? What does it mean to live with the knowledge that you might someday be snatched back into that underworld?

“All of which is to say: What’s the meaning of malady?”

Back in 1997, an Oregon study reported in the Journal of Acute and Critical Care did look at the meaning of illness for women with coronary heart disease. Researchers found that meaning actually evolved over time in a process they called seeking understanding. After the onset of symptoms, the women survivors in the study described three early responses:

  • 1. denial
  • 2. acknowledging
  • 3. being scared

The women also described four additional themes that emerged after obtaining medical attention:

  • 4. naming the illness
  • 5. seriousness of illness
  • 6. comparing self with others
  • 7. causality

Researchers concluded that a patient’s process of seeking understanding contributes to how health care professionals can assess the decision-making behaviours and lifestyle choices of women living with coronary heart disease.  Note that none of these imply that heart disease provides meaning to one’s life.

Sociologist Dr. Ariela Royer reminds her students at Indiana University that when a serious illness strikes, it becomes the central focus of our lives. Everything else in life by necessity becomes of secondary importance in our forced march of trying to ‘normalize’ life, to continue to live, to carry on, as much as possible the way we used to live before we became sick. In fact, she adds:

“It may be that some chronically ill people try even harder than so-called healthy people, both because of the threat the illness poses to their self-identity, and because of their sense of impending mortality.”

So imagine trying harder than healthy people need to try, and all the while trying as well to come up with the good news message that your diagnosis has just presented to you. 

This is what some call the “gift” of illness. As Barbara Ehrenreich describes this strange phenomenon, a serious illness is often seen as “not a problem at all, not even an annoyance – it is a gift, deserving of the most heartfelt gratitude.

I just don’t buy it.

I can, with practice and determination, learn to adjust, to cope, to manage, to function, to put one foot in front of the other in order to adapt to the “new normal” of living with ongoing cardiac issues every day, but please don’t insult my intelligence by telling me that having a heart attack was somehow a lovely gift-wrapped present that I must have needed to bring meaning into an otherwise meaningless existence.

That’s like asking me to believe that I had little meaning in life before 2008, and I know that this is simply untrue. None of us needs a life-altering diagnosis to convince us of that.

It seems Barbara Erhenreich shares my opinion. For example:

“One survivor writes in her book ‘The Gift Of Cancer: A Call To Awakening’ that cancer is your ticket to your real life.

“Cancer is your passport to the life you were truly meant to live.

“And if that is not enough to make you want to go out and get an injection of live cancer cells, she insists, ‘Cancer will lead you to God’.”

Don’t get me wrong. I am not saying that playing a “poor me” victim role is preferable to all of that unfailing positivity. The reality is that we all have untapped resources of resiliency that may not be needed until events like a health crisis strike.

Authors Drs. Steven J. Wolin and Sybil Wolin describe something they call healing resiliency in their book The Resilient Self, in which they claim that creativity and humour can help to “turn nothing into something and something into nothing” when facing adversity in life.

For some of us caught in the midst of adversity, the Wolins explain, even the thought of being resilient during such struggles can seem an impossibility:

“Sometimes it is easier to be a victim. And sympathy can feel sweet; talk of resilience can make some feel that no one is really appreciating exactly how much they have suffered.

“There is a whole industry that would turn you into a victim by having you dwell on the traumas in your life.

“In reality, you have considerable capacity for strength, although you might not be wholly aware of it.”

Finally, if you insist on seeking meaning in bumper-sticker platitudes, let’s heed the ultimate Buddhist reminder which is, simply:

“What is, is.”

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NOTE FROM CAROLYN:   I wrote more about trying to find meaning in a meaningless diagnosis in Chapter 7 of my book, A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, November 2017).  Yes, this was the infamous chapter that the anonymous Johns Hopkins cardiologist who reviewed my manuscript before publication called “irrelevant to female heart patients”,  recommending that it should be deleted.

Q:  Have you struggled to find meaning in a meaningless diagnosis?

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See also:

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26 Responses to “Looking for meaning in a meaningless diagnosis”

  1. Renn July 11, 2013 at 4:55 pm #

    Great post! Very relatable even though I do not have heart issues. Thank you for writing it.

    As a breast cancer patient who “caught it early” and has completed reconstruction, I’ve been told on multiple occasions (by *very* close friends) that now I can put all this breast cancer stuff behind me.

    They think I’m “dwelling” on breast cancer because I continue to blog about it. OY.

    The only people who truly understand the whole enchilada of a life-threatening illness are the folks who have walked in those shoes. If you haven’t gone through it (whatever it is) in your own body, then you don’t get to tell me when you think it’s time I moved past my past.

    I wish life were that simple.

    Again, thanks for writing such a brilliant piece. 😉

    Like

    • Carolyn Thomas July 11, 2013 at 5:37 pm #

      Thanks a lot, Renn, for your wise words that are so applicable to us no matter what our diagnosis – and yes, often to those *very* close friends, too. I prefer to describe what we’re doing not as “dwelling” – but more like merely working through all that “gory glory” (as you have described it so well in your blog, The Big C and Me). Love your site, by the way.

      Like

  2. Nancy's Point July 8, 2013 at 6:20 am #

    I missed this post the first time around, so thanks for sharing it again. I love it!

    I think perhaps it’s human nature to try to find meaning in even the awful things that happen to us. We can take this concept way too far though, and I completely agree with the wonderfully wise Barbara Erhenreich’s thoughts on this (and yours!)

    And that whole cancer is a gift idea, don’t even get me started on that one! Bottom line is, there’s no right way to do cancer or any serious illness. Added societal pressure to try to live up to some unrealistic expectations is potentially quite harmful.

    Thanks again for this terrific post.

    Like

    • Carolyn Thomas July 8, 2013 at 6:57 am #

      Hello again, Nancy. You’re so right – there is no correct way to ‘do’ any serious illness (unless you’re Deepak Chopra, I guess!) That unbidden urge to seek meaning is pervasive throughout life (“…if this had never happened to me, I’d never have gone on to do what I did, meet who I met, learned what I learned, etc”) so it seems to tie things up in a nice neat package for us. But illness is neither nice nor neat, no matter what kind of spin we wish we could add to it.

      Like

  3. Sarah June 19, 2013 at 8:46 pm #

    My son was diagnosed with cancer when he was 9 months old. I often struggled with finding meaning in the whole process. The hardest realization was coming to terms with the idea that bad things do in fact happen to good people. Thank you for posting this and the encouragement.

    Like

    • Carolyn Thomas June 20, 2013 at 5:37 am #

      Hello Sarah – is there anything more heartbreaking for a mother than having your baby diagnosed with cancer? Hope your son is doing well now.

      Like

  4. Kira June 19, 2013 at 6:40 pm #

    Thank you for sharing, this is an important discussion I am passionate about.

    Like

  5. Kira June 19, 2013 at 6:20 pm #

    At 16, I was diagnosed with both hypermobility & osteoarthritis & have been managing & treating these issues now for 21 years.

    I’ve had dozens of surgeries on joints, with no end in sight. We don’t know why my case is far worse then the norm or what the future will look like.

    Nothing upsets me more then being told “everything happens for a reason & we end up exactly where we are supposed to be, that “we aren’t give more then we can handle” & or how impressed you are with how we are dealing with it.

    This ideology offends me in a way no words can express, because this ‘logic’ implies that a victim of rape, a child molested, a person being tortured or barely escapes genocide deserves or needs the experience to have a fulfilled life.

    Even if that line of thought were correct, there are some things that just aren’t worth the price of admission.

    Most of us survive our problems or illness because there is no other choice but to try or wait to die.

    When a person has a chronic long term health issue they are the people faced with managing it everyday & having to live with the consequences of their choices & the final call on any doctor’s opinion. There is no meaning in that – instead it’s simply about surviving.

    Like

    • Carolyn Thomas June 19, 2013 at 6:57 pm #

      Thank you so much Kira for such a compelling and powerful illustration of WHY those “everything happens for a reason” platitudes are indeed so offensive. Putting one foot in front of the other while trying to cope is just about as heroic as it gets some days. Best of luck to you…

      Like

  6. Barbara Keddy June 17, 2013 at 2:03 pm #

    What about the people who say (because I have a stent): “you’re fixed now…go on and live a normal life”...ha! I have heard this so much since my heart attack but I don’t have a good answer for them! 😦

    Like

    • Carolyn Thomas June 17, 2013 at 3:35 pm #

      Hello Barbara – the good news is that we don’t have to have a ‘good answer’ to any question we don’t feel like answering!

      Like

  7. Sandy June 16, 2013 at 1:06 pm #

    “What is, is”….. Well that’s just about how I feel. I have decided to take a new approach to this illness because no one cares anyway.

    My friends don’t care nor do they understand. My doctor is so busy on the computer since the government has taken charge of how offices have to do things that I’m not sure he is even listening to me. It’s always the same, “see you in six months”. Who knows, maybe that six months will never come again. Will anyone notice? I don’t think so.

    The article was wonderful and it’s so nice to see how others feel.

    Like

    • Carolyn Thomas June 16, 2013 at 2:37 pm #

      Hi Sandy – thanks for your comment here. I too like to remember “What is, is” as often as possible. Not because people don’t necessarily care (there’s a difference between not caring and not understanding – they can care very much while still being quite clueless about what we’re going through) but more because it’s just basically more useful to focus on one’s own reactions, not on others.

      So it just is what it is, right?

      Like

  8. cave76 June 16, 2013 at 7:52 am #

    AFGO. The ironic/’funny’ saying: when nothing seems to ‘work’ but bad things happen anyway.

    Like

    • Carolyn Thomas June 16, 2013 at 9:31 am #

      Hello Cave – does AFGO refer to a specific type of growth opportunity by any chance?!

      Like

      • cave76 June 16, 2013 at 1:30 pm #

        “Hello Cave – does AFGO refer to a specific type of growth opportunity by any chance?!”

        Yes, but I can’t repeat it here. LOL

        Like

  9. Elaine Schattner, M.D. June 16, 2013 at 6:50 am #

    Great post, Carolyn! I think the notion of there being meaning in illness makes some people feel better about having a medical problem, but that doesn’t mean it’s true.

    Like

    • Carolyn Thomas June 16, 2013 at 7:07 am #

      I agree, Dr. S – it’s like a desperate instinct to make some kind of sense out of a horrific situation, as if there MUST be a silver lining in all of this horror.

      Like

  10. JetGirl June 16, 2013 at 4:42 am #

    Carolyn,
    I found it comforting that even Ram Das found his spirituality left him as his stroke was occurring. Lets me know that a mere mortal’s focus “on the breath” during an MI might be just an attempt to live in that moment, not a missed opportunity for enlightenment. 🙂

    On the other hand, dealing with the dysfunctional medical system AND treatment of CAS/MVD along with the resulting debilitation and ALL the losses has forced me to look to myself for the answers to existentialist questions.

    I have found that fighting against that which IS uses more energy than I have on any given day. Some days I just have to say “This too” as I endure a new humiliation brought on by all this.

    And with all due respect, Mr. Chopra, you haven’t an effing clue.

    JG

    Like

    • Carolyn Thomas June 16, 2013 at 5:49 am #

      Thanks JG for your unique personal perspective here, especially your astute observation that fighting against what is simply uses more energy than you have. To attempt to do so means adding exhaustion to an already-exhausted state.

      Take care…

      Like

      • JetGirl June 16, 2013 at 7:30 am #

        Ahh, yes, exhaustion on top of exhaustion . . . I did not know the depths of exhaustion before this.

        A wise MD on my case told me a few months ago “when you can hold life and death simultaneously with no attachment to either then you will have peace.”

        Those around us who want us to think ourselves well do not bring us peace 😉

        JG

        Like

        • Carolyn Thomas June 16, 2013 at 9:32 am #

          That MD was indeed wise! I love that – so simple, yet profoundly true (for me anyway). Thank you!

          Like

          • Dr. Barbara Keddy June 21, 2013 at 5:32 am #

            I love this blog; as an aside though, I have to comment on the death of James Gandolfini since it is so much in the news this week.

            I too might have been shocked hearing of his death at 51, but since January 19, 2013 when I had my own heart attack, I am no longer surprised that heart disease strikes the young.

            In my heart rehab program there were 3 young men in their 30s and some in their 40s and most others in their 50s. In that sense, he fits the norm as I saw it in my classes.

            Somehow the public just has to become aware of this trend! My own young female cousin just had a heart attack this spring at 52. It isn’t shocking me anymore.

            Like

            • Carolyn Thomas June 22, 2013 at 4:35 pm #

              Hello Barbara – I know what you mean. I used to be shocked when I heard of a cardiac event happening to a “young” person. It’s still tragic, but no longer shocking.

              Like

            • JetGirl June 22, 2013 at 9:03 pm #

              I was by far the youngest in my brief stint in cardiac rehab and the only one (at that time) that was rehabbing to get back to work. That gap plus the knowledge gap about living and coping with Microvascular Disease made the time there much less effective. So frustrating . . .

              Yes, an MI is an MI but how I rehab is very different from how others might.

              JG

              Like

              • Dorie July 11, 2013 at 2:05 pm #

                I have merely struggled to find meaning in meaningless comments. I didn’t succeed.

                Like

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