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).
- 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