How positive thinking affects patients with serious illnesses

I was sick the other day. A bout of gastroenteritis that had me vomiting with diarrhea for 24 hours and feeling weak for another 48. I felt rough for a while, but got over it pretty quickly.  My family gave me just the right amount of care, and avoided me appropriately because I get grumpy when I am sick.

Had they dared approach me with the suggestion that my state of mind would get me better sooner, or even prevent me having fallen sick in the first place, I probably would have exploded.

And yet, that is how many doctors and family members approach people with serious illness like cancer.  I did it myself, writing, A doctor’s letter to a patient with newly diagnosed cancer here on KevinMD.com.

I wrote to my sick friend, “Take one day at a time while you fight this disease, be grateful for each completed day, look forward to the next one.  Remain positive.  Your state of mind alone can make the difference in being in the percentage of people who survive.”

I believed that what I wrote was true.  In hindsight, this was opinion stated as fact, and on the blog I was gently corrected by people by their comments, and not so gently on a cancer forum I found where I was accused of forwarding the “tyranny of positive thinking.” These comments came from cancer patients.  They should know. But my original opinion is found all over the internet, on YouTube pronouncements, in magazines and in bookstores. It is ubiquitous, and the result is telling on people with cancer who cannot bring themselves to think that way.

The tyranny of positive thinking describes the enforced, unwelcomed negative message from well people that sick people get better or worse depending on how they feel, that they are to some extent responsible for the outcomes of their treatment, good or bad.

In The Human Side of Cancer, Jimmie C. Holland, M.D., of Memorial Sloan-Kettering Cancer Center devotes a whole chapter to this topic, and it is well worth a read.

The chapter starts like this:

“I got really depressed when people said I should think positive. I thought, “If that’s what I have to do to survive, I’m never going to make it.”
-John, a fifty-two-year-old man with melanoma

“People keep telling me to be upbeat. I say, ‘Screw you. I’ll be however I please in dealing with this cancer. I’ve never been upbeat in my life.’”
-Michael, a forty-five-year-old schoolteacher with recently diagnosed sarcoma

Dr. Holland does a far better job than I could do in giving examples and why this particular tyranny is not a good thing for many sick people.

To summarize her, many pessimists survive, and many optimists die early from their diseases.  Being one or the other is no guarantee any way.

But popular culture does not think so. There are, to the best of my knowledge, no books that suggest being positive is no use whatsoever, and that being negative causes no harm.  There are hundreds that suggest otherwise, and that is no surprise, seeing that any book with the earlier premise is unlikely to find readers or be featured on whoever replaces Oprah Winfrey for the TV public.  It is a book that is simply not worth writing.  The latter however are bound to find willing buyers, even if just as a gift from a relative to nudge poor old Uncle Bob into a positive state of mind so his cancer stops spreading.

What scientific evidence is there to support positive thinking for cancer patients?  In essence, none!. A PubMed search reveals very little scientific literature on the subject.  An article titled “Positive psychology in cancer care: bad science, exaggerated claims and unproven medicine” in the Annals of Behavioural Medicine spells it out in detail.  Their abstract conclusion is telling: “We urge positive psychologists to rededicate themselves to a positive psychology based on scientific evidence rather than wishful thinking.”  That says it all.

This article did stimulate a rebuttal in the same journal, arguing that outcomes for cancer may not have been improved but that for other diseases it “was premature to abandon efforts …” and “more research was needed.” Researchers’ slugging it out in the journals is never a good sign that there is compelling evidence either way.

I corrected my blog later down the comments, suggesting this would have been a better thing to tell my friend, “Take one day at a time while you fight this disease, and celebrate each completed day, for that is an accomplishment in itself. No one can tell you how you should feel. Anger, fear, disappointment, depression, insecurity are all part of the package, and we, as your friends and family, must expect you to be your authentic self. Lean on us when you need us. We’re not going anywhere!”

At the same time however I do wish being positive and keeping a sunny disposition was of universal benefit.  It certainly impacts positively on the families, friends and medical carers of people fighting serious illnesses, and I believe there are positives to be had from this in marking this critical time in interpersonal relationships.  For death after all is inescapable.  It comes to us all.

But is it fair to expect this of those facing the fight of their lives, when the healthy are the ones most likely to benefit?

I no longer think it is.

Martin Young is an otolaryngologist and founder and CEO of ConsentCare.

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  • Visitkarte

    Only the greatest can go back on their words and admit being wrong. Thank you for your greatness.

  • http://www.howtobesick.com Toni Bernhard

    Thank you for this important post. I’ve written a book on living well with chronic illness. I have had people who are terminally ill and people with less serious chronic illnesses tell me that it’s the first “self-help” book they’ve read that didn’t just tell them to think positively.

    I’m chronically ill and I so I’ve written the book from my own experience. It was only when I stopped believing all the “you must be upbeat” that is a constant in this culture that I could begin to accept what had happened to me. I realized it wasn’t my fault that I got sick. We’re in bodies and they get sick and injured and old. It happens to everyone. This is just how it happened to me.

    This was the beginning of my ability to treat myself with compassion. “Acceptance” doesn’t mean resignation or indifference. I’m still pro-active about my health — looking for new treatments, etc. But I now don’t blame myself for what happened — as if it were some personal failing. It’s made all the difference to my quality of life.

    Toni Bernhard
    http://www.howtobesick.com

    This was the beginning of a healing process in the mind.

  • Sallie Weems

    Thank you for putting this important concept into perspective. I’d rather think positive thoughts, and it works for me, but it’s always a good reminder that my way isn’t the only way.

  • http://www.healthybalancedlife.com Ann Becker-Schutte

    Thank you for this article. One of the frequent issues that comes up for my patients is the experience of feeling that their emotional experience is dismissed if it is not positive enough. It is through voices like yours that they can begin to feel as though they are not failing. Thank you for your thoughtful re-visiting of this issue!

  • Craig Ayre

    I recently lost an Aunt to Emphysema after a long protracted, painfull battle to survive. She generally seemed positive and good humored, with occasional days of negativity and despair. On both occasions I asked her what her viewpoint on her disease and mood was. On the good days she replied that she had no belief that her mood would make her better, but she said that she would feel better if she chose to be ill and happy rather than choosing to be ill and sad. On the bad days when she was very negative she said she could feel how she damned well wanted. She said that feeling angry or sad would not change the course of her disaese, but that she would have at least the power to choose her feelings about it, even if the choice was to feel sad or angry. And when she wanted to exercise her choice to be happy again, then she would choose to do so. I get the feeling that we not only remove the choice of how to treat the physical aspects of serious illness, but we remove the choice of the emotional means they can employ if we restrict people to being positive. Somehow we disempower people by placing borders around how they can feel. I have a friend who is convinced that it was not his positive outlook that made him complete the surgery and chemotherapy of testicular cancer, but his anger at the disease.

    On the other hand I have a relative that would not have bounced back from Bipolar disorder-induced suicidality were it not for the relentless positivity of those around her. She could not buy into her own positivity, but trusted others around her that the world of fear and despondency she lived in could end without losing her life. She would surely be dead if the positivity of those supporting her was not infectious enough and relentlessly reinforced.

    I guess what I’m saying is that in any serious ilness, speaking in generalities has limited relevance, and each case must be managed according to its own merits. I’m not sure how I’d manage my own life-threatening illness, but I’d sure as hell like the choice over how I should feel about it all. It would be nice when I needed it, to have examples amongst those around me that I still have the choice to feel positive.

    Great post! it really challenged me to think, as I don’t often post responses. Aunty Constance, your example will continue to inspire me, I miss you a lot!

  • http://bushofdoctors.blogspot.com/ Alexandra Albin

    Oh yes positive thinking…how doth thee drive me crazy. This is ironic that this article came up today. It is great to see that it not always easy for patients to be positive (the quotes from patients hit home), and yes there are days that everyone should get out of my way. I do like how the article concluded. Although there may not be scientific evidence of positive thinking the impact on the loved ones around us makes a difference. And, in this moment of raging…that is my best takeaway. They suffer when we suffer and rage.

  • Liz

    “It certainly impacts positively on the families, friends and medical carers of people fighting serious illnesses.”

    Is it possible that THIS is what yields the real causality between positive thinking and better outcomes, that people who *present* as thinking more positively receive better support from loved ones and the medical community alike? Not consciously on the part of providers, of course, but because of course we tend to put more care and effort into those we find sympathetic?

    As a chronic illness patient, I know that, for my loved ones, there is a fatigue that comes with providing support for me: how often CAN one deal with with the hope/help/disappointment cycle, after all? It’s exhausting for a patient, but, for those surrounding us, it can get to be too much. Most people want their sick and disabled to match the HERO and INSPIRATION archetypes they see in literature and film. For doctors, I’m sure it’s more subconscious, but, when you “connect” with a patient, it certainly changes the patient’s response–more than Positive Thinking, Wheeeeee! does, I’d suspect–at the least, and, just maybe, makes you push that extra bit to figure out what will work just a little bit better for the patient.

    I’m wondering if “acting positive,” rather than thinking positively, might be the currency needed for improved outcomes.

  • http://e-patients.net e-Patient Dave

    This is a complicated subject – since you tweeted a request I’ll drop just a quick note, but this is not an attempt to argue :) much less prove anyone else wrong.

    My POV, solely from my experience:

    - I have heard (but cannot dredge up) cites of expectations and hope affecting outcomes

    - I have been personally attacked by some patients accusing me too of “the tyranny of hope.” One interpreted my post here (about facing death) as blaming her for her cancer – she heard my “Laugh, Sing, and Eat Like A Pig” (my book title; explanation is at http://laughsingbook.com) as meaning “If you die, it’s because you didn’t think positive.” I never said any such thing. BUT, people in stress hear things in their own individual contexts.

    - And, a small number of people I’ve met have seemed (to me) to be attached to their suffering – angry at the idea that any other perspective could be possible. But that’s very few.

    And I imagine a few will be angry that I said that. :-)

    Look: everyone faces this differently. The most powerful advice I got, when I found out I was almost dead, was that there’s no one right way to approach it. It affects people differently, and each of us brings our own background, fears, wants and skills to the moment. So I’d encourage anyone in this inquiry to be listening for understanding, with a goal of empathy.

    And yeah, the experience Norman Cousins recounted in Anatomy of an Illness is now understood by science as the field of psycho-neuro-immunology (I added the hyphens): the mood measurably affects the nervous system, which measurably affects the immune system. This does NOT mean death is a failure of mood! It just means mood is one factor in a vastly complex system. And when my time came, my choice was to grab that lever and crank it as hard as I could.

    Nobody can tell how much it helped – it was just my choice. For me, even if I’d died, I would have preferred to know that I did everything in my power. Other people are different. Fine with me.

  • Melanie

    Dr. Young,

    Wow. I am very moved that you would make the effort to look more deeply into this notion that cancer patients will show clinical improvement if they consciously cultivate a positive attitude.

    Thank you. Thank you. Thank you.

    I have metastatic cancer and have been exhorted to “think positive” many times. It’s almost like people feel they have a duty to say it frequently. I have also been told many times (as a form of praise) that I actually HAVE a positive attitude. This is ironic because I’ve never thought, “I can beat this thing!” or kept myself from feeling any passing distressing emotion. I get to feel however I feel—how could it be otherwise? But I’m not morose or hysterical, and I guess that’s what people are picking up on.

    I’ve been surprised at how much cancer scares people. It has seemed to me that they insist on cheerfulness from cancer patients because they can’t bear to feel they too might be subject to this disease someday, or that it is too sad to contemplate that I might die from it. It IS sad to think that my friends and family and I will be saying goodbye much sooner than we’d like, but it’s real and true, and my relationships with people who can look me in the eye and accept that are the deepest.

    So far, in my experience, having cancer is worse than people think (in the sense that daily things like surgical disfigurement or nerve damage can be surprisingly hard to handle) but not as bad as people fear (in the sense that one can truly make peace with the fact of death).

    I hope that many people read this article.

    Melanie

  • Jackie

    I was given Norman Cousin’s ‘Head First: The Biology of Hope and the Healing Power of the Human Spirit’ in 1990 when I underwent a 23-hour craniotomy to resect a 4x5x6.5 cm life-long Central Neurocytom. I underwant 3 rounds of Gamma-knife Radiosurgery in 2001 and am currently being evaluated for another radiosurgery because one of the residue tumors is pressing on the area near the thalamas.

    I just posted on my breast cancer support group website (yes, I’ve also had two bouts of breast cancer in 2003 and 2007 and underwent chemotherapy each time) that the biological basis explained by Dr. Cousin has helped me to affirm the value of keeping a positive attitude (which, by the way, suits my personality very well.) The fact that physical activity increases the release of endorphin which in turn improves our mood and immune system helped me to stay active during my cancer treatment.

    Current research has proven that physical activity directly corelates to cancer survival. All of my doctors have been encouraging me to stay physically active.

    I do know from first hand how some comments from people who meant well can backfire and add burdens to the patients. Everyone likes to show their knowlege, everyone wants to affirm their belief of certain value. I generally just thank them and assure them that I’m doing exactly what they’ve suggested.

    My survival has been due to many factors. The most important ones are my doctors. I know the outcome would have been very different if my neurosurgeon did not labor 23 hours straight to save my life. I know the breast cancer treatment outcome would have been different if my medical oncologist did not choose the right chemotherapy for me.

    I’ve also received wonderful support from my friends and families. And I think a strong faith is directly linked to the ‘positive thinking’ part.

    One of my beloved family members likes to practise ‘fortune-telling’. He always predicts that I “will pass this hurdle’ and my “fortune will turn around soon.” He never was able to ‘foretell’ my new diagnosis – it’s always an after thought: “I just knew that you were going to have problems this year…” I sounds like nonsense. But knowing someone cared me that much to have spend two full months overseas help take care of me, I just count my blessings and let him express his belif system.

    After all, everyone copes with life’s difficulties differently.

  • Jackie

    ‘It’ sounds like nonsense.

  • http://Www.drmartinyoung.com Martin Young

    Powerful comments, all!! Thanks so much for your input.

    The personal experiences as shared here never make it into medical textbooks.

    That is a crying shame, because we doctors still have so much to learn!

    Thank you all!

  • Anonymous

    I think it is totally unfair to expect people with serious illnesses or injuries to maintain a positive attitude. As a cancer survivor myself, I find the notion of positivity to be completely over rated. It does not determine if one survives or not. It just doesn’t. What it does do once again, is make the people around us more comfortable. I’m not saying this is a bad thing, it just does not necessarily directly benefit the patient. I have a blog and posted recently on this topic. I quickly discovered I was not alone in my viewpoint. Here’s the link.    http://nancyspoint.com/having-an-attitude-about-attitude/

  • Anonymous

    If you are not careful you make those sick people feel guilty about thinking negatively too, which makes it even worse for them. Pain and stress needs to be acknowledged first, else you just ‘fight or flee’ again.And worse if someone else tells the sick person to think positive, probably because they do not want to face pain or sadness etc, wich is a normal part of life. Positive thinking is good, but not as a way to hide your pain under.

  • http://twitter.com/hypnosis2help hypnosis2help_Anne M

    I work a lot with people who have cancer and it is unrealistic to expect someone who may have been of a more ‘pessimistic’ frame of mind to suddenly change that mindset on diagnosis.  I have known some who have used their diagnosis as an opportunity to change things but that was their choice.  I think sometimes it is those of us who live and work with those with serious illness who want them to look on the positive because it makes us feel better.

    As human beings it is equally unrealistic to expect us to be happy all the time as it is to expect that we should never feel low or sad.  When I work with clients I help them explore their thoughts and beliefs about what is happening to them and their life, that might involve challenging their beliefs about some aspects or just allowing them space to discuss what is going on.

    As you rightly say death comes to us all.

  • Anonymous

    I tell my patients to make list of the people or things that you are thankful for.
    Do everything you ever wanted to do this week
    If you  believe in GOD go pray and I will pray for you too, if you don’t mind.
    Tell your family and friends that you love them.
    Make a book of best memories in your life so far.
    All these activities give them some something positive to do and remove their negativity for a while which improves their prognosis.

  • http://twitter.com/NewMindset Elese Coit

    Thank you for a thoughtful discussion on this topic.

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