Last night, like many others, I settled in to watch the mid-summer classic, the MLB All Star game. It’s not so much a game, as it is a spectacle. Last night, it also became a cancer spectacle—of standing up and never giving up the fight. This morning, as I thought about it more, I got a funny, uncomfortable feeling in my belly.
To give this discomfort some context, I’d spent much of the day yesterday talking with my mom and providing her support. A dear friend was losing her husband to cancer. She was struggling with her feelings at the end—with wanting the suffering to be over, of the fatigue of caregiving and bearing witness to watching a spouse die a painful, undignified death. That family stood up to cancer. They fought. They lost. It’s not their fault. But the message I took away last night was, sing a “fight song,” hold up a sign, think positive and everything will be ok. I couldn’t help but think about all the people who won’t be ok, despite all the fighting.
I’m sad that we set people with cancer up for failure by telling them to “think positive,” or “fight harder.” What if they do think positively about their hopes and their recovery and they STILL develop metastatic disease or have a cancer recurrence. It is because they didn’t think positively ENOUGH or fight hard ENOUGH? No, it’s because cancer is a horrible disease that in many cases, we cannot cure or control. This is a victory of disease over medicine: not mind over matter.
In 2002, I read a fascinating article that has stuck with me all these years. It is called, “The Tyranny of the Positive Attitude” by Barbara Held (Journal of Clinical Psychology, 58(9), 965-991). Held asks a very important question, “if there indeed now exists unprecedented pressure to accentuate the positive, could it then be that the pressure itself to be happy and optimistic contributes to at least some forms of unhappiness?”
With all the singing and the sign holding and the pressure to NEVER give up, are we contributing to the distress of cancer patients who don’t achieve remission or have a disease recurrence? I think so.
I want to tell people with cancer that it’s ok to be angry, negative, pessimistic, realistic, sad, and worried, while also being hopeful and positive. We don’t have to compartmentalize the negative-we can embrace it, learn from it and not be so hard on ourselves when things don’t necessarily go our way. There are also really important things we need to do while we are coping with cancer that we might not get to do if we are only focused on BEATING the cancer – things like saying I love you, or I forgive you, or crossing off an activity on our bucket list, or saying goodbye. These are JUST as important in the “fight” as these are the things which make us human beings. Not a disease—not a positive attitude. But how we live, even when we might be dying.
Boy, that’s just not fair. If you really think we’re fantasizing by being hopeful and our expectations positive while battling cancer that is a big problem. I have been diagnosed with AML since late March 2016 and I have been doing all that my Oncologist and Nurses have ordered. But I have also continued to take vitamins and keep a really positive nature as support to the medication. If I were to follow you and allow myself to fall into the negative “why even try” like my brother-in-law I’d probably be way slower to recover or not at all. BTW my brother in law? He passed away from bladder cancer in December 2013 – 8 months after he was diagnosed and he had a poor attitude about it the whole time of his treatment.
JP We are so glad you are doing all your team is prescribing to treat your AML and that your use of vitamins and positive thinking is working for you. Our blog was just pointing out that it is also OK for everyone to treat their journey they way they chose and that sometimes that constant presentation of the “fight mentality” can make the end of life much more difficult for folks and their families who may be losing the fight.
Thank you for this wonderfully realistic point of view. I applaud your courage to share that remaining positive isn’t always easy and it’s okay to feel other emotions.
Hello. Beautifully written. I, too, am a therapist. Today, I was told by my hema/onc that I likely have lymphoma. Thank you for your words of wisdom. After fighting thyroid cancer, I tire of people telling me to have a positive attitude, to fight, etc….
I think it’s important to embrace the whole spectrum of feelings. Wishing you the best. ?
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Similar to JP, I will have to respectfully disagree. There is a very good reason, and science behind it, that patients and their families need to stay positive – stress hormones. High levels of stress and negative emotions increase stress hormones, and increase rates of pretty much every disease there is. They decrease the effectiveness of the immune system, which plays a vital part in fighting every type of cancer, even lymphomas and leukemias.
Real research has consistently proven that the patients who give up, die, and the patients that stay positive and keep fighting live better & longer. Your mind effects change in your body. While there sometimes may not be a lot of positive things to focus on in suffering from cancer, it’s imperative that healthcare providers do their part in helping patients find the few and vitally important positive things that may exist. These positive things may exist outside of the box of healthcare and lab results, and may include something about the patients’ families or hobbies or religion. It doesn’t have to be all roses and false hopes, but it does have to be something, anything, to hold on to that is constant and a positive influence for the patient.
Great post! I was bombasted with a lot of “be a warrior” and “fight, fight!” along with a lot of platitudes and praying hands when what I needed was “I am here for you.” And lots of good factual information. It was becoming not OK to let friends and others know how scared I was or how angry (and still am at times). I have some good friends who “get it” and allow me to be who and what I am. I still hate the “rah-rah” articles I see that make me feel like a failure as a person and in my recovery. I do try to stay positive; I do believe I will accomplish my most important immediate goal – to ride my beautiful mare again. But I can’t – yet. And it isn’t because I’m not fighting hard enough or eating right or not pushing myself to stay socially active. I fully expected to be out on long trail rides with my friends by now, to be back doing the nutrition consults – that pay for the hay and the vet – instead of struggling with fatigue to get a meal on the table or read my email. I try hard to believe I have time to recover from my treatment and regain strength and endurance I always have the nagging knowledge in the back of my mind that my cancer has a statistically poor prognosis. So while there are days I can enjoy wearing rose colored glasses I don’t want to become blind.