The dreadful cost of denying how you really feel

I was recently sent a link to this article entitled “Smile! You’ve Got Cancer” written by Barbara Ehrenreich.  I encourage everyone to read it. The article lives up to its striking title and more.  And I couldn’t help but respond with my perspective. So that you know where I’m coming from, my most personal encounter with cancer is that my grandmother died from cancer. I also treat people with acute complications from cancer and/or its treatment frequently in the ER.

I love this article.  Why? Because it’s so real. Barbara talks about the “dreadful cost” of denying how you really feel.  I completely agree.  What comes to mind for me is situations in the ER when a person dies and the family members that are present react in different ways. Some openly grieve.  Some scream. Others silently feel guilty in some way.  Some look to religion for solace. Others “soldier” through.  And some try to prevent others from expressing their grief/anger/disbelief.

That last group always gets me. To me, when a life-altering event happens, whether it’s a dreaded diagnosis or the death of a loved one, the most healthy thing a person can do is express her/himself.  When my world gets rocked, the last thing I want is someone telling me how to feel before I get a chance to feel it. And I understand it’s scary. It’s scary to be fully available for a life-altering experience.  But it’s exquisitely important to express that fear and anger. I found that out first hand after my grandmother died.

I lived with my grandmother for a brief time in India when I was about 4 years old before returning to the U.S. with my family. The love I felt around her is inexpressible. After moving back to the U.S., I unfortunately didn’t have much contact with her except for a few short visits back to India. Then all of a sudden, when I was in seventh grade, my parents told me she had cancer. Before I could take in what really was happening, she died.  It seemed so bizarre, so sudden, and half a world away. I didn’t know how to feel, what to feel, or if I was feeling anything at all. In fact, I pretty much forgot about it, except for a vague sense of loss.

My first inkling that I was repressing how I felt is when I visited India at the age of 22. I visited the home where I had lived with my grandmother. When I saw where she had been buried, I burst into tears. I thought I had come to terms. I didn’t know that was only the tip of the iceberg. Years later, while in medical school, I was studying for exams one evening when a song triggered the memory of my grandmother. I hadn’t thought about her in years, but something about that moment unleashed everything that I hadn’t felt since middle school. I ended up on the floor sobbing uncontrollably for what seemed like forever. And every time I thought it was over, a new wave of profound sadness would surge.

Even now, as I write this, I feel the power and depth of that moment. The amazing thing is, I felt like a new person after that evening. I felt like I was meeting myself for the first time. I certainly know I would be a different physician today were it not for that evening.

Sometimes it’s sadness that we need to express. Other times, as Barbara so eloquently described, it’s anger. Or it may be raw fear.  Whatever it is, we have to give ourselves and others the space to feel it.  I’ve found that telling someone how to feel is often just an unconscious technique to avoid what I really feel myself. Which brings me back to the ER. I try to give space to loved ones to feel and express whatever they want to.  If appropriate, I may place a hand on their shoulder, take their hand, or embrace them. I may stand with them or apart from them, silently. Or I may leave the room. I try to respect what they need to express the best I can given the limitations of the ER.

So be positive. Or be negative. Or be confused. But whatever you are, be yourself. You will be an inspiration to others, just as Barbara is.

Anoop Kumar is an emergency physician who blogs at The Shift.

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  • Patient Kit

    Thank you for the link. I always love reading what Barbara Ehrenreich has to say. And having just been diagnosed with cancer myself this year (ovarian, not breast) after a layoff and the loss of insurance, this particular piece of hers really resonates.

  • Lisa

    As a cancer patient, I hate, hate being told that I need to be positive to ‘beat it.’ I hate being told that my attitude will make a difference in the outcome of my disease. Really? I thought the type of cancer I had and treatment I received is what made a difference in my prognosis.

    • Patient Kit

      I’m an optimistic, positive person by nature. If there’s one thing I found out about myself during this cancer odyssey, it’s that. But I sure don’t want to be blamed for not being positive enough if my cancer recurs and my prognosis worsens. Even being the hopeless optimist that I am, I had my share of dark moments of despair — days when I was so stressed out trying to navigate our healthcare system that I felt like it might have been easier if I had just died in the OR. Trust me, peeps are not comfy hearing those words, maybe especially from someone they expect optimism from. We all need to be free to feel and express our full range of emotions.

      • Lisa

        I am actually a pretty positive person; I suspect our attitudes are probably more alike than you think.

        I know exactly what you mean about not wanting to be blamed if you have a recurrence.

        • Anoop Kumar

          As you allude to, Lisa, there’s a role for positivity. Who doesn’t enjoy real positivity? But being forced to be positive or being blamed for not being positive is an entirely different thing, and unfortunately it seems like you’ve had to deal with that. As someone who has experienced it, can you share why you think this happens so much?

          • Lisa

            Anoop, I think forced positivity happens because people don’t want to deal with the ramifications of serious illness. It is much easier to say tell someone who discloses a serious illness “be positive, you’ll beat it’ than acknowledge they might not survive or they might survive but have to deal with many side effects from treatment. Our culture likes happy endings.

            With regards to breast cancer specifically, the be positive message is reinforced by the awareness campaigns, where the stories told are of women who had a mammogram, had treatment, and whose lives were ‘saved.’ They all have an easy time with treatment and surgery. In addition, they are usually young and attractive. The nuanced message that approximately 30% of the women who are receive a breast cancer diagnosis will have distance recurrences is not discussed.

            400,000 people die each year from breast cancer in hte US. It is hard to talk about the hard realitites.

      • Anoop Kumar

        Patient Kit – Your last sentence sums it all up nicely – expressing the full range of emotions. Emotions and attitudes fluctuate – seems like normal human behavior to me. You’re lucky (and skillful) that you’re good at expressing anger and frustration. Unfortunately, lack of expression doesn’t seem to be restricted to healthcare. Do you think there’s something unique about healthcare in this sense?

  • Carolyn Thomas

    Thank you, thank you, thank you Dr. K for this important post.

    I urge those who have not yet discovered Barbara Ehrenreich’s piece in The Guardian to stop reading this – and go and do so. Her message – and yours! – is a much-needed balance to the “disease as a gift” interpretation offered by so many well-intentioned cheerleaders – who may not even realize how damaging their rah-rah-rah-you’ll-beat-this-if-you-can-develop-the-correct-attitude! mantra may feel to others.

    I’m not a cancer patient, but we heart patients certainly encounter the same general lack of tolerance for any emotion other than smiling, grateful sunshine during our treatment and recuperation. More on this at: “Looking for Meaning in a Meaningless Diagnosis”:

    • Anoop Kumar

      Thank you for your comment Carolyn. My experience with patients as well as in my own life is that the first step in healing is expressing oneself. I get the feeling that many of my patients, especially those who have been sick for a long time, often haven’t been given an opportunity to just vent about their frustrations – whatever they may be. And when I give them that opportunity there’s usually a huge release. If you look around in public life, we don’t see people crying, or being angry, or many times even laughing out loud, yet these are normal parts of life. I’d rather be called strange and authentic than normal and fitting in!

    • Wendy Belgard Hanawalt

      I also recommend her book on the same subject, “Bright-Sided.”

      • Carolyn Thomas

        Absolutely! It’s a must-read for all patients (and their docs).

  • Anoop Kumar

    Meyati – Unfortunately your experience is probably not uncommon. My feeling is that some doctors who deal with serious disease regularly can fall into a sense of routine, including myself in the ER. It’s something I try to stay aware of, otherwise it turns into insensitivity – living in the doctor’s bubble and not really seeing the patient. I’m sorry you had to deal with that. I think anyone in your shoes would have felt rage as well. It’s great that you still managed to find someone that you could joke and laugh with.

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