by Carolyn Thomas ♥ @HeartSisters
Here’s what happens when a PR person (like me, for instance) survives a heart attack, but is no longer well enough to return to work. During extended medical leave, that PR person continues to do just what she knows how to do: she writes, she does public talks, she looks stuff up. She launches a blog and gets invited to attend cardiology conferences to speak or to write about the proceedings for her blog readers.
And all around her, people then respond by gushing things like:
“You have taken this catastrophically bad thing and turned it into a wonderfully good thing!”
The late Dr. Jessie Gruman would have likely recognized this not-so-subtle expectation that good patients will somehow take the lemons that life curveballs at them and make deliciously noble lemonade.
A survivor of four cancer-related diagnoses, a dangerous heart condition, and all of the treatments they each entail, Jessie was also president and founder of the Center for Advancing Health, and an author (AfterShock: What to Do When the Doctor Gives You — Or Someone You Love — A Devastating Diagnosis).
She once wrote an essay she called “The Lemon of Illness and the Demand For Lemonade” on her highly recommended Prepared Patient Forum blog:
“The belief is that sickness ennobles us; that there is good to be found in the experience of illness; while diseases are bad, they teach life lessons that are good – but this belief can inadvertently hurt sick people and those who love them.”
She believes that this potential damage comes from the expectation – our own, our family’s, our friends’, our work colleagues’, those of society at large — that we will seek and find meaning in illness.
“If I do not find spiritual or philosophical benefit, I fall short: either I haven’t tried hard enough or I’m not smart enough to do so.”
For those living with an invisible illness like heart disease, falling short of others’ expectations can feel like a constant reality. That’s when many survivors respond to gushing flattery with an “If you only knew…“ frozen happy-face smile. (Find out why at: “You Look Great!” – And Other Things You Should Never Say to Heart Patients).
And as I wrote here about the pop-science concept known as Post-Traumatic Growth (what doesn’t kill you makes you stronger, blahblahblah):
“My concern with this Post-Traumatic Growth expectation for patients is that not only are we supposed to manage a serious health crisis, but we’d better do this recuperation thing correctly so that we can emerge triumphantly at the other end with heroic results.”
It’s all part of what researchers like Nicholas Lockwood of the University of Montana call “emotional labour“ – which is the suppression of our inner feelings in order to provide a welcoming outward appearance. He explains:
“Heart patients may feel the need to put on a ‘happy face’, when in fact they actually feel psychologically distressed about their medical condition. This masking of genuine emotions can increase psychological stress and decrease relationship satisfaction.
“Even when they use humor to entertain their companions, start a conversation, or even enhance their likability, heart patients can be attempting to express a positive, pro-social emotion which is not genuinely felt.”
So not only are we now expected to look “Great!” (or, at the very least, “Normal!”) and just like our old selves, but we’re also applauded for being able to bravely march well beyond our own illness in order to help others as well.
This begs the niggling question: are celebrities like Lance Armstrong “heroic” because they could afford to be treated by world-class care providers, survived a serious illness and then went on to set up charitable foundations? It’s a fantasy scenario simply out of reach for almost all other (unknown or low-income) patients struggling with exactly the same diagnosis. Are they less “heroic” than a celebrity is?
Dr. Jessie Gruman said it could be argued by some that, within the adversity of illness, she somehow “found the calling and the commitment to speak out on behalf of people who are ill”.
But she added that this was neither a sign of her virtue nor of her will.
“I would trade that commitment in one hot second to not have been sick in the first place.”
She explained that it’s tough when feeling sick to accept the fragility of one’s own body. The chores of illness are unpleasant, and together with the fatigue, pain and other symptoms, they absorb most of our energy:
“I am already doing the best I can to get better.
“To add to these challenges the expectation that the experience of illness will re-order my priorities and make me wiser (or gentler or kinder or more generous) burdens me further. Not only has my body failed, but I might now also fail as a person.”
She added that, if we are reluctant or unable to search our souls for the spiritual and interpersonal benefits our suffering has brought to us, then this also means that we have failed ourselves or our loved ones:
“We haven’t been able to take this action that, even if it doesn’t succeed in ameliorating our pain or extending our lives, might at least make us easier to live with while we are sick.”
Read Dr. Jesse Gruman’s entire essay on the Prepared Patient Forum.
♥
NOTE FROM CAROLYN: I wrote much more about “what doesn’t kill you makes you stronger, blahblahblah” in my book A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, 2017). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 20% off the list price when you order).
See also:
- Post-Traumatic Growth: how a crisis makes life better – or NOT
- Looking for meaning in a meaningless diagnosis
- Why hearing the diagnosis hurts worse than the heart attack
- How we adapt after a heart attack may depend on what we believe this diagnosis means
- Which one’s right? Eight ways that patients and families can view heart disease
- Six personality coping patterns that influence how you handle heart disease
- Denial and its deadly role in surviving a heart attack
- Surviving the crisis: the first stage of heart attack recovery
- The new country called heart disease
- ‘After the Diagnosis’: two books, same title, one hope
- A tale of two women: how we react to a heart attack diagnosis
Heart Sisters 
I had an uncle who was a mean-spirited, ornery and beligerent drunk until the day he died. Yet when he had a heart attack, suddenly the whole family began describing him differently. His funeral was filled with tributes to this “wonderful brave man” and his “courage” and “strength”. I actually wondered while listening to these tributes if I were attending the right funeral.
Just because fate hands you a serious diagnosis, doesn’t necessarily change who you are. A jerk with heart disease is still just a jerk.
LikeLiked by 1 person
Hello Anon – maybe it’s more a reflection on who you were BEFORE a serious diagnosis hits rather than how the diagnosis is somehow supposed to magically turn you into some kind of saint? Thanks for your opinion here.
LikeLike
Hi Carolyn – Really good food for thought here. It’s not only heart patients who are somehow expected to be suddenly noble and generous and wonderful just by virtue of having survived a heart attack. We cancer patients are often praised for “courage” and “bravery” during treatment, when all we are doing is just showing up, one day after another, for chemo, surgery, radiation and doctor’s appointments. Bravery and courage have nothing to do with it when you feel you have no other option that just to “DO IT!” Is a patient with appendicitis “brave” or “noble” for deciding to go ahead with the appendectomy? Sh*t just happens….
LikeLiked by 1 person
Very true, Barbara. Have you read the book “Bright-Sided: How Positive Thinking Is Undermining America” by Barbara Ehrenreich, herself a breast cancer survivor? Very interesting perspective – highly recommended.
Thanks so much.
Cheers,
C.
LikeLike
In answer to your title’s question: NO, surviving a heart attack doesn’t make you a better person, but it does indeed make you a different person for ever. You can never really be the same, and how you are able to define yourself in this new life is nobody’s business but your own.
LikeLiked by 1 person
Thanks for your comments, Charlotte. So much of one’s ability to “define” oneself in this new life is dependent on many factors (like severity of heart muscle damage, range of debility, other comorbidities, social and family supports, etc) – we are all so different!
LikeLike
After reading both your post and the post by Dr. Jessie Gruman. I agree and disagree with your points of view.
Having both a heart condition and fibromyalgia I’ve struggled personally with many of the thoughts and feelings described. As a psychotherapist who specializes in treating people with life-altering medical conditions I witness people who would rather not have the “lemons” and are in too much emotional and physical pain to “make lemonade”.
These people are to be respected and supported in their experiences and when ready gently helped to find their way to a better life, whatever that may be for each of them.
Part of my journey has been/continues to be to learn to detach from my pain & fear and find purpose in having these medical conditions. Having life-altering conditions has accelerated my search and my wanting to contribute to others, even if on the worst of days it’s just a smile.
I am not a zealot, nor do I prosthelytize and as a follower of the Baha’i religion I believe that there are no coincidences in this life. I also believe that we are more than what we materially have or what we do, more than our physical bodies.
Dr. Gruman writes that the burden and expectation we are to find meaning in our conditions amounts to creating a sense of blame and failure “. . . not only has my body failed, but I might now also fail as a person.”
I believe the most important thing is love. And in the end, at the end, we all are measured by how much love we’ve been able to share. My belief is If we do NOT find meaning and learn that everyone’s purpose is heartfelt loving, we indeed have failed.
LikeLiked by 1 person
Hello Judith and thanks so much for sharing your perspective. Your last line does seem to reinforce what Dr. G is lamenting, that “sense of blame and failure” if we somehow have not found or demonstrated to others’ satisfaction that ennobled meaning in being sick. I do agree with her observation that most of us living with debilitating illness are just doing the best we possibly can each day, putting one foot in front of the other, whether we are ultimately able to “find meaning and purpose” in such reality, or show the world how we have triumphed over the diagnosis – or not. Sometimes, even a smile is just too much to expect.
I’ve come to realize, for example, that when I do my public presentations on women’s heart health, I’m now doing it far more FOR ME than for the benefit of my audiences. It’s ultimately selfish rather than magnanimous. Hardly noble at all! For those 2 hours onstage, I get to feel “normal” again – smart, competent, funny – just like I used to be, like my old self, pre-heart attack, in the ‘good old days’. Even though every talk takes me a full day to recuperate from, each seems a deliberate and fair trade-off for me. More on this at “Why We Keep Telling – And Re-Telling – Our Heart Attack Story”.
Cheers,
C.
LikeLike
I am saying that WE, no matter our station in life, our physical condition, race, creed or beliefs are all failures if we are driven by our egos. I also know that it is easier for me to say than for me to do.
I am saying that we as human beings are failures if we are unable to express love in whatever way we are capable of at any point in time.
You say you are doing public presentations far more for yourself than the benefit of your audience. Whenever we do anything to the best of our abilities, EVERYONE benefits. My conclusion from what I’ve read on your blog and see the work you do you are expressing love. (The Baha’i tenet is that “Work is worship”)
I understand the point Dr. Gruman is making. However, by taking the position that as people with debilitating conditions, we are “different” and we are exempt from finding meaning/purpose labels us at the worst as victims and at the best as limited BEINGS. (I’m not referring to physical limitations)
I believe she is missing the point when she feels judged/blamed for not “. . . doing the best I can to get better.feel better”. Our purpose is not to feel better or heal our afflictions. What matters is our relationships and connections to each other. When we operate from that position – as you seem to do – we have found purpose.
I do not believe we should use our conditions as excuse for not doing the best we can and BEING the best we can be WHATEVER that is at any point in time and circumstance. Ultimately it is not about ego, it’s about love.
Carolyn, I appreciate your thoughtful response which honors our connection.
With love!
Judy
LikeLiked by 1 person