Author: Terri Ann DiJulio, lung cancer survivor, CDMRP reviewer, GO2 Summit Planning Committee & NAC Member
I am a lung cancer survivor …
I am also an outspoken advocate in the lung cancer community.
Because of this, many of you may already know that I have been diagnosed with early stage lung cancer three separate times over a 17-year period.
What is the first question many people want to ask when learning someone has lung cancer?
Come on, ask me … I know what it is.
Let’s take a minute and talk about the elephant in the room. Let me be candid here — I don’t really want to talk about it; I feel like we HAVE to talk about it and talk about it as if our lives depend on it — because they do!
The question many of you want to ask is: “Terri Ann, did you smoke?”
I desperately want to be able to answer that question with a resounding, “No, I did not smoke.”
But I can’t.
Until recently, whenever I shared my story, I would skirt around the “smoking” question. When the topic came up, I would share how there are six of us in my family who were diagnosed with lung cancer and we all had varying relationships with tobacco. Some of us smoked and some of us did not. Yes, that felt like a good way to not actually answer the question. I’ll go with that. Why? Because I didn’t want to be judged.
Recently, while attending Escape to Thrive, a cancer advocacy leadership conference, I learned just how triggering this topic is for me. During a workshop on stigma, guilt and grief, I stood up and shared how the stigma of smoking has had a monumental impact on the lung cancer community.
With the microphone in my hand, I shared a few facts. Facts like: Roughly 25% of all newly diagnosed cases of lung cancer are people who never smoked and that 80% of people who smoke never get lung cancer, yet screening for lung cancer is tied to one’s smoking history. I continued by saying that yes, of course tobacco is a risk factor, but so is radon, pollution, asbestos, other environmental hazards, age and family history.
Because the current screening guidelines are tied to tobacco use, some people never have a chance to be diagnosed at an early stage — people like my friends Elizabeth, Kirk and Liz, who are living with Stage 4 lung cancer. Nor would my friends Linnea, Gina and countless others, including my mother and uncle, who lost their lives to this disease. Quite frankly, because the guidelines require a certain level of tobacco use, I wouldn’t have qualified for screening either; my lung cancer was discovered “accidentally.”
Before I handed the microphone to the next person, I talked about my own history with tobacco, which is something I rarely share. The last words out of my mouth while the microphone was leaving my hand were, “I didn’t deserve lung cancer.” And with that sentence, my voice cracked and the tears rolled down my face.
Author Brené Brown once said “shame cannot survive being spoken.” Now, I know this to be true. It wasn’t until that moment that I realized just how much hidden shame I carried because of my “relationship with tobacco.” I spoke my shame in that conference and it didn’t survive; I released it. I am now ready to own my whole story; the story that includes a 15-year-old girl who picked up her first cigarette.
Why is it important for me to share this story?
I thought long and hard about my experience at the conference; it was really nagging me. Holy Cow, is shame getting in the way of people getting screened? Because of this stigma, are people holding back from getting care? Are they afraid of being judged? Afraid of the looks and comments they may get — like they deserved it if screening discovers they have lung cancer?
What we need is less judgement and more people getting screened, being diagnosed early and treated with compassion. Long-term survival and quality of life improves with early diagnosis when treatment options can save more lives. The current screening guidelines are tied to smoking — and shame is tied to smoking … so it feels like we may be dealing with a much bigger issue here!
I have learned to be outspoken and I share my story with anyone who will listen. If I didn’t realize until recently the personal shame I carried, imagine how someone a bit shy may feel. Perhaps they really don’t want to talk about it. Perhaps they don’t want to admit it to anyone — not even their doctor who can help them get screened for lung cancer. Perhaps the stigma surrounding smoking is hurting ALL of us, whether someone has a tobacco history or not. The truth is: Lung cancer can impact ALL of us. Tobacco use plays a role, but it is also not the full story.
Brené Brown also said, “Shame cannot survive empathy.” What if addressing the stigma and shame associated with tobacco use and addiction is met with empathy? Can empathy lead to more people getting screened, more people asking for help with smoking cessation? By opening up the conversation in a compassionate way, can we perhaps save more lives? WHAT IF, destigmatizing lung cancer gets us closer to screening guidelines that are open to everyone — regardless of risk factors? What if people diagnosed with this disease are treated with more compassion and dignity?
The reality is that lung cancer kills more people than any other cancer, so it is clearly not ALL tied to tobacco use.
Having said all of this, I DO know why you wanted to ask the question: “Terri Ann, did you smoke?” Because if I said yes, I smoked and you said no, you didn’t smoke, then you could put your mind at ease and tell yourself that you wouldn’t get lung cancer. My hope is that now, after reading this, you know that is just not true!
ANYONE can get lung cancer.
So, let’s work together to reduce stigma and shame and bring more empathy to the conversation. Perhaps we can impact change by simply recreating the narrative, because none of us know if — or when — lung cancer will impact our lives.
I finally feel ready to talk about this. Are you ready to join me?
Terri Ann:
Excellent article!! I wonder if we can reproduce it or adapt it for the ILCN News.
Please let me know….
…….CJL
My first wife, Jane Lynn, died in 2005 from lung cancer, and people often asked, “well, did she smoke?” as if it was her fault she got sick. I came close to punching someone at one point on that. But this article is important that people understand that lung cancer is not always from tobacco use. Thanks for posting.
Great article. Thank you for your courage and advocacy.
Thank you Teri Ann, for sharing your story. I am a Nurse Navigator for Lung Cancer and I can absolutely say that NOBODY deserves this disease. There should be no blame allowed with cancer, nobody as of yet, knows exactly why some get cancer and some do not. Although tobacco is linked to cancer, it is a very addictive substance and once some try it they struggle with stopping. Whether or not a person smokes, or smoked, it is nobody’s business but their own. I have met many patients with lung cancer and they do the best they can, and personally face their challenges from the present and past with courage and strength. A lung cancer journey is difficult enough, and to be judged for it (for any reason) is not deserved. I agree with Teri Ann, together let’s try to change the mindset and provide needed love, support and empathy; not shame and stigma.
Great article Terri Ann. Thanks for unveiling your true feelings and for being brave enough to ask the question and answer it.