This blog is something I’ve been thinking about for a very long time. I’ve hesitated to write about it, with the fear of being misunderstood, but I think it’s important enough to take that risk.
November is Lung Cancer Awareness Month. When I got involved with LUNGevity 13 years ago, lung cancer was thought of as ‘one disease’ and treatment was the same for everyone. Today there are several advocacy organizations, and because of more funding for research there has been a tremendous increase in the understanding of lung cancer biology and significant advances in all treatment modalities. But the media still isn’t talking about lung cancer. What is it going to take for lung cancer to become a national priority?
I wrote a blog last Spring and talked about the perpetuated stigma being largely to blame for the lack of empathy, support and funds raised for research – from the government and physicians down to individuals. I condemned the media for its failures in educating the public on this major health issue and I questioned why celebrities won’t step up and use their respected, influential and far reaching voices. I talked about the importance of the lung cancer community coming together as one community to create a common platform, a common agenda and becoming one voice, because the scope of what we need to accomplish is so much greater than fighting for tiny pieces of the diminishing pie.
What I didn’t talk about was a barrier that is holding the lung cancer community back; the perpetuated stigma within the community itself. It’s there and it’s significant. The stigma in the general public is so strong that survivors who have never smoked feel the need to immediately, and constantly, declare three words (“I never smoked”) to avoid the three words (“Did you smoke?”) that imply self-infliction. I understand how people feel and know those three words immediately put someone on the defense. But those three words (in either scenario) have a detrimental effect by dividing a community that desperately needs to unite.
As someone who was diagnosed with lung cancer almost 6 years ago, after already losing many loved ones to this disease, I know that facing a lung cancer diagnosis is already an uphill battle – no one should have to defend themselves or their loved one for getting this insidious disease. Cancer is complicated – there’s no simple cause and effect. The only person who should ask those three words is the doctor and only for files, research purposes or treatment decisions.
Many believe the non-smoker angle will catch people’s attention, and it does for the moment, but at what cost? Think about it. When someone heavily emphasizes that they never smoked, the message being sent to the other 85 percent of lung cancer patients who are smokers or former smokers is, ‘You are the ones that deserve lung cancer.’ While I know that’s certainly not the intention, unfortunately the impact of that message is profound and wide-reaching — a hard hit to a survivor with any kind of smoking history.
We can’t focus on using stories of never-smokers who get lung cancer as a way to validate the disease. It is not productive and it doesn’t work. Sure it may release the blame from the small percent that never smoked, but it unknowingly and hurtfully perpetuates the stigma and shifts a heavy blame to those who have any kind of smoking history.
The stigma is killing us; our moms, dads, sisters, brothers, sons, daughters, friends, etc. Imagine if you had to watch your parent, sibling, child or anyone you love suffer through the cruelty of lung cancer until their last breath. The pain from that experience and loss 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?
Bottom line: It doesn’t matter! Anyone can get cancer and regardless of what caused it no one deserves to die from lung cancer! Let’s focus on patients and their families; the devastation we go through watching lung cancer physically and emotionally destroy the people we love, because that does matter. Now is the time to change the conversation. Let’s show our faces, share our stories and humanize the disease. Let’s stop talking about smoking and start talking about the realities of lung cancer.
The World Health Organization (WHO) recently declared outdoor air pollution as a leading cause of lung cancer. The press release from WHO on October 17, 2013 says, ‘There is sufficient evidence that exposure to outdoor air pollution causes lung cancer.’ This finding hasn’t received much media attention, despite the significance; we breathe outdoor air = we are at risk for lung cancer. This is critical information for the media to disseminate as none of us live in a plastic bubble! Here is the link – http://www.iarc.fr/en/media-centre/iarcnews/pdf/pr221_E.pdf
When people used to ask me if my parents smoked I would get upset and angry. None of my other friends who lost parents to various cancers were asked if their mom or dad did something to deserve cancer and to die. For a long time I would respond with, ‘Does it matter?,’ and follow with, ‘If they did, does that mean they deserved to die and I deserved to be orphaned in my 20’s?’
I now realize that the question is not ill intended; it’s simply ignorance. I can’t blame people for believing a stigma that has been so ingrained in their minds their whole lives. So, I have changed my tone and I now respond with, ‘Why do you ask?’ Most people are usually stunned that I answer with a question, and I don’t want to make anyone feel uncomfortable, so I will ask if they are aware of the causes of lung cancer, and I explain why and how those three words are lethal. I then take that opportunity to start the conversation, educate and advocate.
Let’s change the conversation and start really talking about lung cancer. And, let’s start in the lung cancer community.
Post your suggestions on positive ways we can work together to end the misconceptions about lung cancer and change the way people learn about, treat and live with the disease.