We were sitting around with friends and family recently over some very nice red wine when our friend Noel asked a question about my weekly Toastmasters meetings, and specifically about whether I thought there are some people who simply never learn to feel comfortable speaking in public, even after Toastmasters training. After a moment’s contemplation, I replied to Noel:
“I can’t really say – because those who actually feel too uncomfortable often just stop attending after a while. But the ones who stay seem pretty comfortable!”
It turns out that what I was describing is essentially what’s known as survivorship bias.*
This concept helps to explain why, in any longtime organized group, you get happy members who are busy high-fiving other happy members who are just like them. The ones who are not getting high-fived are the ones who are no longer there – for whatever reas–on. But you’d never see that side, of course, if you sought out only the people still there. That’s survivorship bias for you.
As described by the always intriguing David McRaney, author of the clever books You Are Not So Smart and his latest, You Are Now Less Dumb, survivorship bias refers to our tendency to focus on “survivors” instead of whatever you would call a non-survivor, easily overlooked because of their current lack of visibility within the group.
Sometimes, as McRaney explains, this means we inuitively tend to focus on the living instead of the dead, or on winners instead of losers, or on successes instead of failures:
“It is easy to do. After any process that leaves behind survivors, the non-survivors are often removed from your view.
“If non-survivors become invisible, then naturally you will pay more attention to successes.
“Not only do you fail to recognize that what is missing might have held important information, you fail to recognize that there is missing information at all.”
My friends in the breast cancer community report a similar reality. During Breast Cancer Awareness Month, the holy month of Pinktober, when the corporate world is awash with pink awareness ribbons, every run/walk/bake sale/fundraiser “for the cure” celebrates with unabashed glee the pink-clad participants who have heroically “beaten” their cancer.
But at the same time, the world’s attention is self-consciously diverted away from those who are not there because they’re either no longer well enough or no longer alive.
One survivor recently wrote about publicity campaigns that focus on awareness and screening campaigns while ignoring all those whose cancer treatment has not been successful:
“It is critical to recognize and respect the reality that the pink ribbon excludes the most important group of the breast cancer community – those with metastatic cancer.”
And as David McRaney warns:
“You must remind yourself that when you start to pick apart winners and losers, successes and failures, the living and dead, that by paying attention to one side of that equation, you are always neglecting the other.”
This preference for the positive can also support the false belief that those who succeed must clearly possess some uniquely superior qualities.
After author Barbara Ehrenreich was diagnosed with breast cancer, she described her own experience with this phenomenon in her essay in The Guardian called “Smile! You’ve Got Cancer”:
“The more fellow victims I discovered, 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. What causes it and why is it so common, especially in industrialized societies? Why don’t we have treatments that distinguish between different forms of breast cancer, or between cancer cells and normal dividing cells?
“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.”
It’s also why colleges and conferences and commencement ceremonies prefer hiring inspirational keynote speakers. Audiences love a winning example of struggle against tough odds. David McRaney adds:
“The problem here is that you rarely take away from these inspirational figures advice on what not to do, on what you should avoid, and that’s because they don’t know.
“Information like that is lost along with the people who don’t make it out of bad situations, or who don’t make it onto the cover of magazines – people who don’t get invited to speak at graduations and commencements and inaugurations.”
Or as Google engineer Barnaby James once warned:
“Beware advice from the successful.”
In the world of cardiovascular disease, a space I’ve become intimately familiar with since surviving a misdiagnosed “widow maker” heart attack in 2008, we are duly inspired by tales of heroic survivors who overcome all odds in order to thrive despite their cardiac crisis.
These are the folks who successfully complete their first marathon shortly after leaping off the O.R. gurney following lifesaving quadruple bypass surgery, which they of course sail through with nary a complication. These are also the people whose terrifying cardiac events motivate them to quit smoking, drop 30 pounds, take up competitive swimming, become vegans and save the whales with evangelical zeal – all because they have, at last, learned the importance of “living life to the fullest” (and can we please stop saying that?)
Survivors like this are so inspirational! Or are they? See also: Non-Inspirational Advice for Heart Patients.
When I first started my 3-month cardiac rehabilitation program post-heart attack, for example, I felt acutely dismayed – and not inspired at all! – while listening to one of my fellow rehab buddies who boasted to everybody within earshot that he was not only already feeling amazingly fabulous, but he was also back at work and playing his best golf ever.
Back at work? Golfing? I could barely manage to somehow get myself down to the rehab gym twice a week, where I’d then have to hold onto the exercise bike for dear life. What was wrong with me? Why was I still experiencing these debilitating and ongoing cardiac symptoms, unable to either return to work or golfing?
Well, okay, I’ve never been nor will ever be a golfer – but you get my drift . . . My fellow rehabbers’ heroic milestones made me feel worried and inadequate.
I’m guessing that when our cardiac rehab nurse was out telling her colleagues and funders about our program, she’s raving about that amazingly happy-working-golfing quadruple-bypass-surgery survivor, not about the middle-aged woman with distressing cardiac issues, still struggling just to keep up.
Supporters and donors want to hear about inspiring success stories of triumph over adversity.
And others who are somehow not able to bounce back as heroically get to feel guilty and embarrassed because they’re clearly “not doing it right”. No wonder heart patients so often feel alone if they can’t bounce back like all those success stories do.
When I started writing about my own experience with debilitating post-heart attack depression here on Heart Sisters, I was gobsmacked by the immediate response from other heart attack survivors in the same boat. Even though, as Mayo Clinic experts tell us, up to half of survivors experience significant depression following a cardiac event, fewer than 10% are appropriately identified – and very few are actually talking about it. See also: “I’m Not Depressed!” – and Other Ways We Deny the Stigma of Mental Illness After a Heart Attack
The trouble is this: you can often miss a lot of reality when you’re gripped in the giddy throes of survivorship bias.
♥
Cartoon: XKCD
NOTE FROM CAROLYN: I wrote lots more about becoming a heart disease survivor (heroic or not!) in my book for Johns Hopkins University Press called “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (and use their code HTWN to save 30% off the list price).
See also:
“She’s a fighter!” – and other metaphors in medicine
Does surviving a heart attack make you a better person?
Looking for meaning in a meaningless diagnosis
“You look great!” – and other things you should never say to heart patients
Non-inspirational advice for heart patients
“I’m not depressed!” – and other ways we deny the stigma of mental illness after a heart attack
Heart Sisters 
Outstanding post that is spot on!
I’m a breast cancer “survivor” as you know, and I detest being put up on a pedestal because I did not die of breast cancer (yet). It’s clear that our culture wants to always emphasize the positive and dismiss the negative. Thank you for such an important post. I’m sharing this.
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Thanks so much for weighing in here, Beth. This is a cultural issue, for sure, and in a world where the nightly news is so filled with bleak despair, no wonder positive stories act as a relief from all that reality! But when those stories overshadow reality, those “non-survivors can become invisible” as McRaney writes. And then it’s the “not doing it right” unspoken pressure that’s most distressing…
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Hi Carolyn,
On a related note, have you noticed the TV ads from major cancer centers in which they proclaim great success and state things like cancer is going to lose and we are going to win, and the like? They state these things as if they’re factual. Such ads irritate the heck out of me and your post helped me realize why that is.
We can’t merely focus on the ‘success’ stories, talk about survivorship bias indeed. Marketing by such centers is a tricky thing… and I don’t think they’re doing the best job of it sometimes. Your last sentence says it all. I love that sentence!
As you know, I loathe the sugar-coating of the breast cancer experience and believe it has been harmful to many because it’s not reality, at least it’s not mine.
Great piece. Thank you.
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Thanks so much, Nancy. Those hospital/cancer agency messages are clearly designed to raise money, and let’s face it, it’s seductive to think we’re going to BEAT this demon once and for all (providing we donate enough money!) I worked in hospice/palliative care for many years before my heart attack, and we were very aware of how difficult it was to fundraise in a society that rewards winners. For example, the next-door cancer hospital’s message to donors was: “Give us $6 million and we’ll find a cure for cancer!” while our own end-of-life care message to donors was “Give us $6 million – and everybody dies!”
NOTE TO READERS: Read Nancy’s wonderful memoir called Cancer Was Not A Gift – And It Didn’t Make Me a Better Person.
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Carolyn, you’ve hit the nail on the head in more than one instance. I’ve seen this in both my rare diseases & even in transplant with those of us with longer recoveries post surgery & getting complications that aren’t classic or overly common with our illnesses or most of the “typical” experience.
It’s like people want to hear to a certain point & then when the reality gets too harsh, it’s tuned out & some are kind of patted on the head & gently urged to take a backseat without being told as much. There’s a line too of how sick you need to be to get the point across about the seriousness, but being too sick it’s scary to people. I could say so much more on this that corroborates this more fully & better, I’m just at a loss to do it effectively now at the moment but suffice it to say I totally relate, understand, & second what you have stated here.
Thanks for putting it out there. ALL of it.
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Hi Nikki – I think what you’re describing is partly because people really want us to be “okay” for two reasons: 1. so we won’t be feeling bad anymore and 2. so they can breathe easier around us and stop worrying. Also a good reminder to carefully choose who to confide in about how things really are (the rest can get a polite “Fine thank you!“)
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We do not take into account the meds we take and doctors are not caring enough to check!
I was on amytriptiline for fibromyalgia and it causes heart attacks! I had 2 in one year then I checked all my meds and that was one and the other was statins.
We cannot rely on our doctors, I should have known since I am a nurse!
Crist
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Hi Cristi – two heart attacks in one year is two too many. I hope you are feeling much better now. I would add one important word to your last sentence: “we cannot rely ONLY on our doctors…” As patients, our job is to become well informed about our own health – ideally in partnership with our docs. I rely equally on all of my physicians for their specific expertise – and I do lots of homework to better participate in all of our conversations/decisions. I also think pharmacists are under-appreciated by most patients – they’re the ones who really know about meds.
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This article rings profoundly and depressingly true. Chronic congestive heart failure (especially for those whom each day brings the struggle of fatigue, angina pain, depression, anxiety, loneliness, weakness, breathlessness, dizziness, multitudes of meds, maybe an ICD-D, intrusive thoughts, or the fear of another shock or ER visit) and the reality that mind over matter doesn’t always work.
Each HF patient is different and every story is like a tiny heart cell magnified a trillion times…so unique, yet so embedded in a heart functioning alone with other cells doing for one heart what must be done for IT TO SURVIVE… and yet at any time it can die unnoticed. It’s as if the minute we get the HF slapped on us we become relegated to a pile of electrical or plumbing nightmares much like money pit houses.
We get fitted with Pacemakers or CRT- Defibrillators and while we are still interested in whether we have complete AV HEART BLOCK or just LBBB, they don’t care… You have an implanted device! NEXT!
Or it could be the Quadruple Bypass Patient with Diabetes who spent 3 weeks in ICU and bears the OPEN-Heart scar… She tried to go back to work in 3 weeks after her 2 week follow-Up! Why in the WORLD! She fell into a deep depression when she had to apply for long-term Disability Benefits and could barely get through the Phase 2 Cardiac Rehab Program her doctor prescribed for her… She just felt useless… Not lucky at all to be alive. Not lucky at all to have benefits. Not lucky at all to be able get into Cardiac Rehab. Not wanting to take care of herself at all when she would start sweating and get shortness of breath on the treadmill. She didn’t care for herself at all and she didn’t want to talk to any Social Workers… She was done at 54.
And we are back here in our corner… Done but no one wants to say it. So thanks for this! EVERYBODY LOVES A WINNER!
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Patricia, you are telling it like it is, for far too many patients. These are exactly the kind of stories I hear almost every day from my readers. Not everybody bounces back cheerfully from a serious diagnosis (or more), yet it’s common for those who don’t to actually believe they’re the only ones struggling. So often I hear/read: “Oh, wow. I thought I was just me…” I’m sure many will be nodding in recognition after reading your words.
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Great article as always. I think the “real” truth lies in the stories of those on the receiving end of survivorship bias, but no one is listening….really listening.
The big giants in health research may pretend to and truly believe they are listening but they are not, not really. If you voice the facts that you do NOT feel better after that stent, that some meds make your life a living hell, that stress has been a major player in your life before and after your HA often from difficult circumstances beyond your control and you really need help with that, you are labeled NON-COMPLIANT and they stop listening!
Sadly those non-compliant, non-successful outcomes probably hold in their stories the real advances in the treatment of heart disease in women.
So be brave, speak out, be non-compliant and eventually someone will listen and real advancement will begin to happen.
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Thank you Janet. You have reminded me about the way so many patients were dismissed when they first complained about truly debilitating and intolerable side effects while taking statin drugs. Docs merely switched them to different types of statins. Complaints by patients have been repeatedly downplayed/ignored. Meanwhile, just look at all those people who are happily taking statins and spectacularly lowering their LDL (bad) cholesterol!
But now suddenly we have a new family of non-statin cholesterol drugs that are being specifically targeted at “patients who cannot tolerate statins” (as reported last month at the annual meeting of the American College of Cardiology in Chicago). Researchers there announced that they’ve proven “there really ARE people who can’t take statins!” Had researchers, physicians and Big Pharma been listening all along to patients who were not feeling well, we could have avoided decades of misery. As you wisely observe, it’s often these specific non-successful outcomes that lead to real advances – providing that somebody is actually paying attention.
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Great article, thank you. After my heart attack in 2012 at the age of 46, I went to the ER many more times after that because of chest pains.
On one of those visits, an ER nurse, about my age, said he went back to work a week after his heart attack/stent placement. That statement made me so sad because even though my heart test were all “just fine”, I kept having chest pains and panic attacks and had to quit my job. I know he tried to be optimistic and encouraging but it kind of had the opposite affect on me.
And there is this commercial (is it for Aspirin maybe?) where the lady says “I had my heart attack at 40. Six weeks later I ran my first half marathon…” Well, good for you – I do jog and exercise, but it’s so hard, my chest keeps hurting…
At the Walk for the Cure though, there are plenty of teams with T-Shirts that state “in memory of…”, so there IS some recognition of those brave patients that lost the fight. And if the organizers wouldn’t keep the campaign positive, donations might drop, which wouldn’t be helpful…
But yes, I do feel like a “loser” sometimes… but I keep going and try to stay positive. I’ve met wonderful people on my journey that encourage me, I started yoga and mindful meditation – and I AM happy for those who overcome obstacles and succeed 🙂
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Thanks for such interesting comments, Petra! I agree with you – I too am happy for those who do overcome obstacles (but I just don’t want to hear an E.R. nurse bragging to me about them when I’m clearly not able to be as “successful” as he is!) And that aspirin ad just makes me want to gag…
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Terrific article. Talking about our anger at our illness, or our slow recovery is not socially acceptable, so the message is: put a happy spin on it or don’t talk about it at all.
I’ve often thought about these issues. I am always happy for those that survive cancer, heart attacks, etc., but when I hear the “God has a plan for me”, it makes me, shall I say, angry? Survivors are mostly lucky; and often had the right knowledge and medical team. God had a plan for those that died too. They were not lesser individuals, just not as lucky.
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Couldn’t agree more, Mary. I’m guessing that patients who are struggling with recuperation are praying just as hard (or harder!) than those who recuperate “successfully”.
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