by Carolyn Thomas ♥ @HeartSisters
I blame genetics – and three decades spent working in public relations – for generally making me one of those smiley, glass-half-full, annoyingly über-positive personalities much of the time. Not even horrific symptoms during my heart attack could alter the weak happy face that seemed freakishly pasted on throughout that ordeal.
It’s as if I were channeling Elizabeth Banks‘ classic character in her short yet brilliant film “Just A Little Heart Attack“ – in which she attempts to smile brightly despite textbook cardiac symptoms, and even good-naturedly taunts her concerned family:
“Honey, do I look like the kind of person who’s having a HEART ATTACK?”
Don’t make a fuss. Chin up. Don’t worry, be happy. Just get on with it. I’m fine, just fine.
Trouble is: people like me who sport a perma-smiley face may not be “fine”. Not at all. And I now believe that feeling obliged to pretend we are what we’re not can be both physically and psychologically damaging.
Dr. Michael Lerner offered a San Francisco audience a similar message when he spoke at a Healing Journey conference about the difference between curing and healing:
“I think this is one of the most toxic New Age ideas: that all patients should keep a positive attitude.
“What a crazy, crazy idea that is! It is much healthier, much more healing, to allow yourself to feel whatever it is that comes up in you, and to allow yourself to express it. Allow yourself to work with the anxiety, the depression, the grief.”
Dr. Lerner was speaking about the cancer patients he works with, but could have easily been addressing heart attack survivors (as he happens to be himself). I found his words to be oddly uplifting, in the same way that you might feel relieved by permission to feel the way you feel, that it’s all somehow “normal”, and that you are not alone in feeling this way.
Author Barbara Ehrenreich observed that the pervasive pressure on sick patients to be relentlessly positive is like “seeing the glass half full, even when it lies shattered on the floor.”
In a compelling essay called “Smile! You’ve Got Cancer!” in The Guardian (January 2010), breast cancer survivor Ehrenreich observed that cancer is not a problem or an illness – it’s a gift! Or so she was told repeatedly after her own cancer diagnosis. But the positive thinkers are wrong, she now says: sugar-coating illnesses can exact a dreadful cost:
“Today, breast cancer is the biggest disease on the cultural map, bigger even than those more prolific killers of women – heart disease, lung cancer, and stroke. And the first thing I discovered is that not everyone views the disease with horror and dread.
“Despite helpful information out there, 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. In fact, the overall tone is almost universally upbeat, with inspirational quotes like ‘When life hands out lemons, squeeze out a smile’ and much more of that ilk.” This is an ideological force in our culture that encourages us to deny reality, submit cheerfully to misfortune, and blame only ourselves for our fate.”
The reality that I seem to be denying is that since surviving a heart attack, ongoing cardiac issues along with a revised diagnosis of Inoperable Coronary Microvascular Disease have meant a profound transformation in my day-to-day life, complete with yucky bits like debilitating chest pain, shortness of breath and (worst!) frequent bouts of bone-crushing fatigue.
A former distance runner in good health, I’ve now become a frequent flyer of the medical care system, including regular consults with the Regional Pain Clinic, my cardiologist and other doctors. My days are defined as one-outing, two-outing or (rarely) three-outing days, each exhausting outing requiring a lie-down both before and afterwards just to help me maintain a minimally functional state. Or as one of my readers described his wife’s reality living with the heart condition called Hypertrophic Obstructive Cardiomyopathy:
“A trip upstairs means planning for the nap she’ll need after to recuperate.”
Much of the time, frankly, I feel like I’m barely hanging on by my fingernails. There is nothing good or noble or positive about feeling this sick.
And I certainly don’t consider heart disease to be a “gift”.
Yet around other people – almost unbidden – out trots my happy-face-smile and that positive “I’m fine, just fine!” persona. Heart disease is largely an invisible diagnosis; I know that I look and sound pretty “normal” to most people. I’ll attempt to make pleasant small talk even while near collapse from exhaustion. Where does this craziness come from?
Check out this smiley photo of me standing between my late mother Joanie and my daughter Larissa. This picture was taken just a day and a half before I was finally hospitalized with a myocardial infarction (heart attack). I was very ill during this photo shoot. But even though by then I’d been suffering increasingly worsening cardiac symptoms every day, day after day, several times a day, I still somehow had an instinctive need to appear fine, just fine – especially around my mother and sibs during an important family celebration of Mom’s 80th birthday.
The truly shocking thing to me after finally being discharged from hospital was how utterly unprepared I was for the bleak emotional crash that struck during those early weeks of recuperation. Nobody – no doctor, no nurse, no hospital staff, not one single person – had warned me about this crash while I’d been recuperating in CCU. I had to learn on my own months later that, as Mayo Clinic cardiologists explained to me, up to 65% of heart attack survivors experience significant new-onset depression, yet fewer than 1o% are appropriately identified.
Why are heart patients not being warned about what might lie ahead?
The Alaska cardiac psychologist Dr. Stephen Parker has survived a heart attack himself, and has written with rare and exquisite candor about suffering severe depression and anxiety following his own cardiac event – including in his highly recommended book, Heart Attack and Soul. He describes, for example, what he calls the “swirling emotions” he experienced after surviving a heart attack:
“Relief at survival — disbelief and anger that it happened — grief for everything that has and will be lost — gratitude to those who helped — extreme vulnerability in a previously safe world — fear of what the future might bring.
“A heart attack is a deeply wounding event, and it is a wound that takes a long time to recover from, whatever the treatment.”
Clinical psychologist Dr. Elvira Aletta, whose writing and worldview I admire a lot, wrote recently on a similar theme in life: the popular platitude that insists What-Doesn’t-Kill-Us-Makes-Us-Stronger Blah Blah Blah . . . For example:
“There are so many ways life almost kills us.
“The responsibility of caring for elderly parents, a disabled child, a spouse. The burden of being a single parent. Discovering that the person you thought you could trust with your most precious heart turning out to be unworthy. Losing a loved one to illness or death, slowly or suddenly. Being worn down looking for a job or being in a job you hate. Fighting for our own lives when sickness strikes and doesn’t politely go away like it’s supposed to. All of the above happening all at once!
“Trauma, emotional dark pits, cascading series of unfortunate events. They happen. Life happens.”
But some days, Dr. Aletta reminds us, we just have to rage. Cry, whine, moan, pout, eat ice cream right out of the carton or whipped cream straight from the aerosol can.
And just simply adjusting our general expectations of life can also be an effective strategy. She adds:
“Lowering expectations sucks, but that is exactly what has saved me from becoming a depressed bitch of the first order.”
This kind of spunk captures the essence of why I seem somehow able to carry on these days in what heart patients often refer to as “the new normal”. I’ve had to lower – and then often re-lower – daily expectations of what I’m able or willing to do. And this downshifting can escalate even from hour to hour. Dr. Aletta is correct – it often does help me to function, day by day.
Dr. Eric G. Wilson’s book, Against Happiness: In Praise of Melancholy, may serve as a reality check on our obsession with the pursuit of happiness at all costs. He writes:
“I am afraid that our culture’s over-emphasis on happiness at the expense of sadness might be dangerous, a wanton forgetting of an essential part of a full life.
“Further, I am wary in the face of this possibility: to desire only happiness in a world undoubtedly tragic is to become inauthentic, to settle for unrealistic abstractions that ignore concrete situations.”
Don’t get me wrong. Like most of you, I’d generally rather spend time with cheerful, funny optimists, and I have little tolerance for the “poor me” victimhood of whiners (very likely, this may help to account for my own extreme reluctance to actually become one of them, no matter how tempting!)
And I’ve both read and written (here and here) about the known effectiveness of an optimistic attitude when it comes to improved outcomes in chronic diagnoses like heart disease. The medical literature is crawling with experts telling us so.
Meanwhile, over at The New York Times, veteran health columnist Jane Brody wrote this* about being positive and optimistic in life:
“Optimists have lower death rates than those who are pessimistic. No doubt, the optimists are healthier because they are more inclined to take good care of themselves.
“Research has indicated that a propensity toward optimism is strongly influenced by genes, most likely ones that govern neurotransmitters in the brain. Still, the way someone is raised undoubtedly plays a role, too. Parents who bolster children’s self-esteem by avoiding criticism and praising accomplishments, however meager, can encourage in them a lifelong can-do attitude.”
Clearly, Jane and her researcher pals never dropped in at my house while I was growing up in our family of seven. “Avoiding criticism”? “Praising accomplishments”? I wish.
My parents’ perspective: to do so would produce kids with swelled heads, which as everybody knew back then, would be the worst possible fate for any child.
My own perspective: pasting on that pleasant happy face smile and my own “can-do attitude” – no matter what! – may have served me well as a self-preservation strategy rather than being the result of having my self-esteem bolstered as a child.
Consider these parting words from Dr. Michael Lerner:
“Underneath those feelings of anxiety, depression, and grief, if you do allow them to come out, you can find the truly positive ways of living in relationship with all of your feelings.”
In other words, maybe people living with a chronic and progressive condition like heart disease should be allowed – no, make that encouraged! – to occasionally wallow with gusto until they’re ready to crawl out and function in the world again.
♥ ♥ ♥
©Carolyn Thomas Heart Sisters http://www.myheartsisters.org
Q: How has a ‘glass-half-full’ attitude helped – or hurt – you while living with chronic illness?
NOTE FROM CAROLYN: I wrote more about the pitfalls of that eternal smiley-face – especially in women – 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 Johns Hopkins University Press (use the JHUPress code HTWN to save 30% off the list price when you order).
See also:
“Smile, Though Your Heart is Aching”: Is Fake Smiling Unhealthy?
The New Country Called Heart Disease
“You Look Great!” – and Other Things you Should Never Say to Heart Patients
What Heart Patients Can Learn From Cancer Patients
“God Punishes Bad Children” or, Why You Have Heart Disease
How We Adapt After a Heart Attack May Depend on What We Believe This Diagnosis Means
Six Personality Coping Patterns That Influence How You Handle Heart Disease
Innocence Lost: Life After a Heart Attack
Heart Sisters 
For me I smile constantly and I credit that to God for allowing me to live everyday to the fullest. Secondly when asked how I’m doing I say fine and continue to do the things I truly enjoy. I still love to substitute teach after 30 years of teaching which was my passion. However, after only two days I’m exhausted. My days are busy, lazy, and tired. I hate my medication but take it religiously. I don’t share my real feelings, I question any kind of chest pain, I don’t put myself in awkward positions, I don’t argue, and my husband is my support. He makes my coffee for the morning, keeps the kitchen spotless, helps me change the linen, and we take turns cooking. I do have anxiety and depression that comes and goes since the myocardial infarction. I’m now 33 months past that dreadful day and 4 day stay in CCU.
I will just take every day as it comes and finally make no excuses for the word NO. To me that has been the hardest since I love volunteering and being a part of the community I’ve grown up in. I blogged for the first year, I spoke about what it felt like having a heart attack, and a friend responded “we have all been sick with something!”. I continually speak about women and heart attacks to Civic organizations, and churches. If it only makes a difference for one person then I’ve accomplished my goal for helping others. My next goal Chairman of a Tiara Ball where every penny goes to Cancer Research…..400 guests. Bottom line it keeps me from the WHAT IFS????
LikeLiked by 1 person
Making no excuses for the word NO is such an important skill – and some of us never learn it especially if we’ve been lifelong “doers” – even when saying NO is the obvious common sense response. Refusing to say NO is called being a martyr – and nobody likes being a martyr. It’s hard to say NO, but it’s way more important to respect our bodies and what they can and cannot do now.
I couldn’t tell from your description of your friend’s response to your blogging (“we have all been sick with something….”) if that was a joke – or her just being dismissive of your lived experience.
So continue to speak up to others about that lived experience and what you have learned from it, Teula! And good luck at the Tiara Ball!
LikeLike
I’ve replaced my ritualistic greeting response of ‘fine’ with ‘yes, I’m here’ or some such and I can’t tell you how free I feel.
I’m trying to let go of the feeling that I have to tell everyone that I’m fine. Because often, I’m not. And I may not want to to talk about the fact that I’m not, but I don’t want to carry on the charade that I am. I’ve seen some ‘enforced cheerleading’ in the patient community that has made me uncomfortable – that the truths about the difficulties we face as patients and caregivers are sometimes too difficult to air, that we have to put on a brave face and show that it will be ok. Sometimes it will not be ok. And that’s the truth.
Thank you for this post Carolyn. Talking about the full range of human emotion lets people know that what they are feeling is ok, and that they are not alone.
LikeLiked by 1 person
Thanks for raising such good points, Isabel! You’ve also captured beautifully why patient/caregiver support communities (both in real life and online) can be so valuable – both are resources that let us vent and whine and cry and tell the raw scary truth without fear of judgement or one-upmanship, and that whatever we’re feeling is indeed okay and we are not alone! Sometimes I’ve found that when I try to keep a brave face pasted on during a bad day, it’s to protect others from feeling awkward around me. I wrote more about this on “Do You Want The Truth – Or Do You Want ‘Fine, Thankyou!’?“
LikeLike
Yes, yes and yes! I love the quote from Dr. Lerner about keeping a positive attitude being one of the most toxic new age ideas. I’m so glad to hear others speak out about these misguided ideas. Excellent post!
LikeLiked by 1 person
These ideas are especially misguided when forced upon us by well-meaning cheerleaders who don’t have a clue. It’s quite another thing when we can finally say we feel better, we’re doing better, but it’s never up to the cheerleaders to insist how we “should” be feeling.
LikeLiked by 1 person
This is really interesting perspective on “positive” attitudes, You are a very skilled blogger. I look forward to seeing more of your posts. Also, I have shared your website in my social networks.
LikeLike
Carolyn,
Another fantastic post. Thank you!
(I will add that research shows that smiling actually releases neurochemical anti-depressants. It appears that facial muscles when contracted into a smile signal the brain to “smile back”.)
LikeLiked by 1 person
Yes, I’m aware of that research. As they say: “Do I smile because I’m happy, or am I happy because I smile?” My own neurochemicals must have been on overdrive in mid-heart attack because I swear I kept up my little happy-face smile throughout the entire ordeal. Didn’t do a thing to stop my heart attack, alas . . . 😉
LikeLike
Carolyn,
Thank you so much for another brilliant article and with such wonderful references. I am so proud to be among them! I loved the video with Elizabeth Banks. She plays my clone only with blond hair and twenty pounds lighter! 🙂
LikeLiked by 1 person
Hello Dr. A and thanks for taking the time to add your comments to this post! I too love this Elizabeth Banks film – she perfectly captures that “Fine, just FINE!” reaction tendency of so many of us, doesn’t she?
cheers,
C.
LikeLike
Carolyn:
Excellent post that puts it all together …
I have always wondered about those 35% of folks who did admit to depression after a heart attack. Do they admit to being crazy?
As we have talked about before, there are many levels of heart attacks, and many gradations of damage from heart attacks. Perhaps those folks who don’t show up as depressed after a heart attack are so stoical and/or optimistic that they miss the implications of near death experiences and/or heart damage.
Then there was Dick Cheney, who did jumping jacks right after his stent to show that he was OK and feelin’ good. . Right.
Steve
LikeLiked by 1 person
Maybe we should forward this article to Mr. Cheney . . . He doesn’t have to do jumping jacks anymore to “prove” how “happy” he is now with his new heart.
LikeLike
I really enjoyed this article, Carolyn. I love the energy with which you pull together all your sources and add your insightful analysis. Reading this, I wouldn’t know about the severity of your symptoms and fatigue if you hadn’t described them. I so identified with your one, two, or three outing days. Mine are mostly one or two these days.
Now on to your question. I feel strongly that my generally optimistic outlook is the reason I have survived the many obstacles life has thrown at me. I’m not talking about a false optimism that denies problems, but a sense of hope that things can get better and that I will be able to find ways to learn and grow despite my limitations.
Like you, I was not raised in a family that took care to “bolster my self esteem.” Things do usually tend to get better for me, but not because I insisted they would. I had to work hard to get every bit of treatment I’ve ever gotten, tending as I do toward unpopular conditions that insurance doesn’t want to pay for or doctors don’t want to acknowledge.
LikeLike
It’s very interesting, Caryl – with those of us who have a “generally opimistic outlook” by nature, we know no other reactions to compare that to. We respond to life’s events the way we respond; that’s what we know. Thanks so much for your kind comments here, and good luck to you.
cheers,
C.
LikeLike
Carolyn,
Thank you so much for this. Just this week I have received a diagnosis of restenosis that requires surgery on Monday. I have run the gamut of emotions and have felt bad about being so mad about it.
I don’t feel so bad about being this angry now. Thanks again!
LikeLiked by 1 person
Yikes. So sorry to hear of your restenosis diagnosis, Jodi; good luck on Monday! Whatever you’re feeling between now and then is perfectly understandable. Take care of your precious self….
LikeLike
I too had restenosis. Anger was my response, for many reasons. I think the cardiologist made a poor choice of stent the first time. I have changed cardiologists more than once since then. I am now satisfied with the doctor I see. I hope all goes better this time.
LikeLiked by 1 person
Excellent article, many sound points. BUT what’s the alternative to trying to appear pleasant when out in public? Being angry, glum, upset, preoccupied with every negative thing in life? Trust me, I have some self-absorbed people like this in my life and they can be exhausting to be around. Yes, bad things DO happen to all of us but that doesn’t mean we can’t make an effort to “get on with it”.
When people ask “How are you?” it doesn’t mean they want or need us to give them a complete medical update on every single health issue. Sometimes a simple “Fine thanks!” is good enough. There’s a good reason we say: “SUCK IT UP!”
LikeLike
Good points – there is indeed a fine line between going through life behind a false mask of happiness, and going through life needing to share every ache and pain with all around us when we’re suffering. My friend Dave calls this “the organ recital”.
LikeLike
Hi Carolyn,
This is the first time since my heart attack that I feel that someone understands.
I had almost stopped reading your post because it was driving me crazy. I don’t believe in pity party at any time, I was raised to suck it up and keep going so I hated all those who try forcing the new normal down my throat. Each day I find myself getting weaker and people want you to smile just because you’re here. Thankful I am sometimes, but that does not make me that happy camper.
Because I don’t smile all the time does not make me a bad person nor does it mean that I am depressed. I slipped through the cracks and got released back to work full time, so my life is very meaningful. And in my way I am happy but I live with the fact that my heart is taking that happiness away little by little every day and no one can tell me this is a new normal and be happy. I do maintenance at my hospital three days a week and I still see myself getting weaker but still I try.
Pride and self-esteem go hand and hand and when one is reduced to ask for help with the simplest of things doesn’t go very far with self-esteem. Over the past year and a half I have watched myself get weaker on a daily basis and something as simple as thirst forced me to ask a student to open a twist top bottle of juice. Real good for my self-esteem, but I still push on.
It is good to know that when I am angry about things like that that I am not crazy and that I have a right to be angry.
Very Enjoyable,
Robin
LikeLiked by 1 person
Hello Robin and thanks for sharing your unique perspective here.
Keep pushing on…
C
LikeLike
I love this posting – it contains a wealth of knowledge that resonates really strongly with so many of us; heart attack survivors or not. I also love the fact that you’re so open and honest about the things you’re still “working through” four years later.
You COULD come across as a know-it-all; instead we see you as a real, live human being who is an expert in this area (yes, you are! Don’t deny it!) but who is still learning. Thank you.
LikeLiked by 1 person
Thanks so much, Deborah (especially for the part about me not coming across as a know-it-all – although I know I come pretty darned close some days!) Your reaction means a lot to me because I often despair that after four years of living with heart disease, I wonder why I still don’t seem to “get” it! We live in hope, ay?
cheers,
C.
LikeLike
We’ve lost the societal signals that gave us all indications of what others might be feeling. Those included things such as rules about wearing black, one year of mourning, etc etc. I’m sure there were rules about people who were not well, but the magic of science and cures were not expected as they are today.
We as a society do not do well with the sadness, introspection and grace of the complete cycle of life and suffering. Perhaps we are removed from this because we live in a society that is so distracted by entertainment and technology. I saw two young women “out to lunch” the other day, having eaten their meal, each, deeply engrossed in their smart phones, silently sitting together as though their human presence did not exist. So sad!
Formerly, religious customs as well as societal cues kept some of that in balance. Many felt constricted though, because the one-size-fits-all expectations WERE too confining for those who did want to move on, or who had suffered long enough and were ready to embrace life. But, as those with any serious, life-threatening chronic illness knows, there is very little space for those like us.
Sometimes I feel like I should “get off the stage already…speed it up!” Move on, so that everyone can get back to life and not get bogged down. Clearly, this is just my frustration over the lack of understanding and compassion in the world. Compassion that my illness has opened my eyes and my understanding to. That, indeed was a gift. In the other times, sadness and anger does have their day.
Being Greek, there is a famous quote: I am a fatalistic optimist. In our culture, tragedy and comedy is appreciated in equal measure. I like that about the Greeks!
LikeLiked by 1 person
Well said, Mary. I would add that another possible reason we may have lost those societal signals to help us pick up on the problems of others is that we’ve also become masterful at “getting off the stage already”, as you say.
When asked “How are you?”, for example, I’m often tempted to respond: “Do you want ‘Fine thanks!’ – or do you want The Truth?”
cheers,
C.
LikeLike
Some years ago, when I was beginning many ongoing years in which my latest news was (still is) an upcoming surgery or recovery from one, the disconnect between social expectations and my life became sharp.
At a party, a friendly acquaintance asked what I was up to, so I actually told him and answered his following questions honestly, and later was admonished by my brother (the host) for my inappropriate behavior, as the occasion was celebratory. So now I avoid such occasions if a relentless bright smile will be too exhausting.
However, when in doubt I developed a very selective response to “Great to see you! How are you doing?” Always with a smile, it goes like this: “We’re doing ritual greetings, right?” (Smile) “Why, I’m fine! Just fine. And how are YOU doing?”
LikeLiked by 1 person
LOVE that selective response, Kathleen. Personally, I pick and choose carefully who hears anything beyond “Just fine!” Even among family and friends, some folks are more appropriate listeners than others – especially those who are skilled at ‘one-upmanship’ to top your story! Yikes . . 😉
LikeLike
In every way, Carolyn, you are so right.
LikeLiked by 1 person
“We’re doing ritual greetings, right?” Excellent response! I’m gonna have to use it.
Carolyn, as always, thanks for your post. A previous commenter (I think) touched on this, but one reason we (especially women) are encouraged (forced, often) to put on that happy face when we’re anything but happy is because our culture has become scared of death — we hide our old people, we’ve virtually shamed public mourning out of existence, and illness is a reminder that we won’t live forever. (In fact, when I think about the quantified self movement, I sometimes see it as a kind of insurance of perfection that will protect –not– QSers from aging, illness, and death.)
I think, too, that sometimes we fear (as listeners) that we won’t be able to bear the pain or suffering of others. Maybe we feel as if we have to do something, to “fix” it. (Not that we could, but that we should.)
My close friends are the ones who can simply bear witness to and for me (and I do the same for them). We’re sensitive and pragmatic. We don’t try to cheer each other up, dwell on suffering–*or* say, “don’t worry, it will be alright.” We listen, we ask if we can offer the other suggestions (if we have any), and just stay present. What gifts they are!
Thanks again.
LikeLiked by 1 person
Such important points! Fear of death, the Quantified Self movement, our discomfort at others’ suffering – you covered the gamut here. Well said, Angela.
LikeLike