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Deena’s Confession

As LCAM comes to an end I need to make a confession and apology. I firmly believe the destructive stigma associated with a diagnosis of lung cancer must be eliminated. I had the privilege of speaking at the Congressional Briefing on Lung Cancer Stigma presented by the Lung Cancer Caucus and GO2 Foundation for Lung Cancer. It was appropriate for me to share my perspective because I grew up when this stigma did not exist, tobacco use was glamorized and embraced! And then it wasn’t.

The war on smoking

The 1964 proclamation by the Surgeon General that “smoking is hazardous to your health” quickly rallied the troops; government agencies, medical institutions, and well-intended non-profit organizations started a “War on Smoking”. Their primary weapon was fear of lung cancer. We were taught: smoking causes lung cancer, lung cancer will kill you, don’t smoke or quit and you will not die!

In school, we were shown graphic images illustrating the adverse effects of smoking. Then we went home. In 1965 over 40 percent of the adult population used tobacco.1 My parents used tobacco, as did most of their friends and the parents of my friends. We were taught our parents were going to die!

Cancer cover-up

Mysteriously, most of our parents did not develop lung cancer. Statistically, 74 percent of smoking-related deaths are not caused by lung cancer.2 Unfortunately, some parents did develop lung cancer. Back then when someone died of cancer, any cancer, it was seldom mentioned, especially to children. However, once the “War on Smoking” started, if your parents died of lung cancer, you probably knew. Very likely you were told your parents died because they smoked, basically causing their own death. How traumatizing. Society went from embracing tobacco use, to vilifying people who used tobacco, within one generation.

We perpetuate the stigma

I’ve also witnessed my generation vigorously perpetuating stigma, we’ve had fifty years of practice. After learning my diagnosis, a friend revealed her Dad died of lung cancer when she was a teenager. I sensed her pain and anger. I suspect she believes her father killed himself with cigarettes because he could not overcome his addiction. A year or so after this conversation, her older sister, also addicted to nicotine, was diagnosed with lung cancer. The pain and anger re-surfaced. My friend outwardly expressed little compassion for her own sister. How sad for both of them.

During a LCAM event, I met a very nice couple, “fellow” baby boomers. The husband was diagnosed with late-stage disease. During our conversation, his wife loudly proclaimed: “I don’t know what he expected, he smoked for fifty years!” The look of despair and shame on this man’s face was undeniable. How does he cope when his wife-caregiver-support system outwardly blames HIM? He is not only fighting a deadly disease but fighting stigma in his own home. To me this is stigma in its most destructive form.

Everyone is worthy of compassion and hope

The majority of lung cancer patients I know who are diligently fighting this stigma never used tobacco. To me they are the “innocents”, adversely affected by 50 years of the misguided “prevention only” strategy, creating inequitable research funding. However, there is one devastating aspect of this stigma that has not touched them. Their families and friends show unconditional loving support and encouragement. Isn’t everyone diagnosed with a life-threatening disease worthy of compassion and hope?

My honest confession

Which brings me to my confession. When I was first asked “Did you smoke?”, I tried to distance myself from my past tobacco use. I would answer: “Yes, BUT I quit in the 80’s, I was young, started in college and only smoked socially”. I realized my coping strategy was adding to the stigma. I was distancing myself and indirectly blaming lung cancer patients who used tobacco when diagnosed. For this I am deeply sorry. I now respond: “Does it matter?” This statement leads to important discussions.

I’ve learned to handle the insensitive “did you smoke” question. What would tear HOPE from within my soul to fight this devastating disease would be if my loved ones were angry, blaming me for my diagnosis. This is a reality in far too many homes, created by stigma. I’ve learned ending the stigma has to start with me. As a community, let’s make sure we always stand up for EVERYONE diagnosed with lung cancer!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The LungCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Ending the Tobacco Problem: A Blueprint for the Nation (2007). Accessed on November 27, 2019. From https://www.nap.edu/read/11795/chapter/4#45
  2. Tobacco-Related Mortality. CDC. Accessed on November 27, 2019. From https://www.cdc.gov/tobacco/data_statistics/fact_sheets/health_effects/tobacco_related_mortality/index.htm

Comments

  • BBee
    1 month ago

    As a person growing up surrounded by smokers, then going on to smoke myself, thank you. It really bothers me when the first thing a person asks when they hear someone has lung cancer is, “are they or were they a smoker?” As if it’s true, somehow they deserve it. Stop it. This is cruel and judgmental. Every person deserves love and compassion.

  • Yolanda Brunson-Sarrabo moderator
    1 month ago

    @bbee Totally agree with you on this. In no way shape or form does smoking make it okay to suffer with the disease. This stigma is brutal and may be the reason this disease struggles in getting more awareness or stronger awareness.

  • Kathyrainyday
    1 month ago

    Every single person asked when they found out I had lung cancer if I smoked. I finally got to the point where I quit telling people. I also felt ashamed to join any support group because I was one of the lucky ones and did not need any treatment except 6 month CT scans of my lungs.

  • Yolanda Brunson-Sarrabo moderator
    1 month ago

    @kathyrainyday So happy that you are in no need of heavy treatment, but in no way should you feel ashamed. As a former caretaker, I can tell you it can be a struggle as people come with their own conclusions, but you can’t live your life by their assumptions. Wishing you the very best!

  • lindaczak
    1 month ago

    Not once did my family or friends make me feel guilty for being a smoker most of my life. What others think doesn’t concern me one whit. It’s not their battle and for the most part they’re ignorant about the fact that anyone can get lung cancer and many smokers never do. Many, many things may be implicated in various kinds of cancer but have not been propagandized the way lumg cancer has. Having sex can cause cancer! Being fat can cause cancer! No nationwide outrage there! Dinosaurs had cancer. Two of my dogs died of cancer. It’s a disease of just living. Nobody is exempt and to stigmatize one group really annoys me. Obviously!

  • Gladup
    1 month ago

    I hear ya! I think the medical community has become more supportive to ex-smokers with lung cancer; however, the general public need more education on this. Lots of the patients I’ve met have never smoked, and lots of smokers I’ve known never got lung cancer.

  • Lisa Moran moderator
    1 month ago

    Well said, Deena. It’s up to us to train the next generation how to react to lung cancer.

  • Ronda Beaty moderator
    1 month ago

    I did smoke. I dread the question I know is coming. I too have started answering with “does it matter”? Sometimes, I am brought to instant tears when the question is asked. When I say “does it matter?” I’ve yet to leave a person speechless for a moment. Most consider my response and become immediately regretful for asking. I agree with you. The stigma must be brought to an end, whether a smoker or not. Thank you for writing.

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