Overcoming the Stigma of Lung Cancer: A Personal Story

The first time I experienced the smoking 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 stopped me cold: “My mom said it was your dad’s fault because he used to smoke”. 

The emotional scars and the impact that left on me at 13 years old are with me forever...

Nothing about the smoking stigma is okay

I continued to experience this 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...

Since my own lung cancer diagnosis 11 years ago, I've experienced the smoking stigma often. I have learned how to address the stigma and I am now comfortable with addressing it. But watching my kids face the same judgement I endured? That 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 every reaction imaginable - from "Aren’t you angry?", "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 smoking stigma surrounding the disease and the ‘lung cancer is preventable’ message remains a deadly problem.

This stigma creates real barriers: to early diagnosis, to accessing treatment, and to securing research funding. The psychosocial distress it causes is well-documented and profound. 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.

The hidden stigma within the lung cancer community itself

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.

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 patient should also have to carry shame or blame, defend their past, or feel shunned by their own community.

The pervasive stigma is, unconsciously, dividing our community — when we desperately need to unite!

Why our labels are getting in the way

But it’s not easy to unite when we use the stigma itself as a tool to fight 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 lung cancer patients. More than that, we are people – people who smoke, used to smoke, never smoked, etc. That is where compassion must begin.

The loss is the loss, regardless of smoking history

The pain of watching someone you love suffer through the cruelty of lung cancer until their final 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?

No. It doesn't. 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 dismantle the stigma - and move forward together, with compassion.