NO ONE Deserves Lung Cancer
The first time I experienced the stigma surrounding lung cancer was as a teenager, almost 37 years ago. My dad had just died of lung cancer at 41 years old. I was at a baseball game after school and one of my friends asked me why I was never in a good mood anymore. I said my dad just died. My friend’s response? “My mom said it was your dad’s fault because he used to smoke”. Suffice to say the emotional scars and the impact that left on me at 13 years old are with me forever...
Nothing about the stigma is okay
I continued to experience the same stigma in my 20’s when my mom and aunt died of lung cancer. As if being orphaned by the disease in my 20’s wasn’t enough...
And since my own diagnosis of lung cancer 11 years ago, I have experienced the stigma often. I am now comfortable with addressing it, but to see my kids experience it, and knowing first-hand how painful it is, is heart-wrenching — and it is not OK.
NO ONE deserves lung cancer
But what I don’t talk about often is the response I get when people learn that I have a brother, 18 months older than I who has been rolling and smoking his own cigarettes since he was 16 but doesn’t have lung cancer. From friends to fellow advocates to physicians, I’ve heard it all from aren’t you angry to how did you get it and not him, but the one that really gets me is when people say, well that doesn’t seem fair. Since when is life fair? NO ONE, including my brother, deserves lung cancer!
Stigma creates barriers
There have been incredible strides in progress and treatment for lung cancer over the past decade, but the stigma surrounding the disease and the ‘lung cancer is preventable’ message remains a deadly problem.
It creates barriers to diagnosis and treatment and funding for research and the psychosocial distress is real. It also prevents research and awareness into all the other risk factors of lung cancer, which leaves the public with a false sense of security that if they don’t smoke, they won’t get lung cancer.
Let's talk about stigma within the lung cancer community
I’ve been a lung cancer advocate for 19 years and have witnessed another barrier slowly arise over the years that many aren’t aware of; the perpetuated stigma within the community itself.
It’s there and significant. Think about it. When someone is forced to heavily emphasize that they never smoked, it unintentionally shifts heavy blame to the 85% of patients who have any kind of smoking history. The physical and emotional pain and stress are enough for any cancer patient to endure - no one should feel shame and blame, be shunned or have to defend themselves for getting this insidious disease!
The pervasive stigma is, unconsciously, dividing our community — when we desperately need to unite!
Remember, we're all people
But it’s not easy to unite when we use the stigma itself to try and eliminate the stigma. There will always be a stigma if we are defined by what kind of smoker, we are: a smoker, a former smoker, a non-smoker, or a never smoker. Of course, health care providers need that information for records, but people with one of the (at least) 22 other diseases associated with smoking don’t get labeled, and neither should we. We are all lung cancer patients. Plus, we are people – people who smoke, used to smoke, never smoked, etc.
The pain of watching someone you love suffer through the cruelty of lung cancer until their last breath is unbearable, so does it really matter whether or not they smoked? Does it mean that they deserved to die? Does it minimize the loss? Does it mean those left behind deserve less sympathy?
It doesn’t matter. But what does matter, is that the lung cancer community stands united, one voice, and changes the conversation. I recently co-authored an article with the International Association for the Study of Lung Cancer about the National Lung Cancer Roundtable's collaborative effort to end stigma in lung cancer. To make real progress we must diminish the stigma and move forward in a positive way.
What do you resonate with most, when it comes to advocating for lung cancer?