When people reveal that they have been diagnosed with cancer, what should they expect to hear? One would hope they would receive words of support and encouragement. Unfortunately, when many lung cancer patients divulge their diagnosis, they are asked, "Did you smoke?" This knee-jerk response is the result of a stigma that has followed lung cancer for decades.
Public health education efforts about the harmful effects of smoking have been successful in helping millions of people quit smoking or never start. Awareness about lung cancer and its risk factors are important; however, there have been unintended consequences. For instance, many think that only smoking causes lung cancer, while in reality there are a variety of risk factors, including secondhand smoke, radon gas exposure, air pollution and family history. The public also often identifies a lung cancer diagnosis with a personal responsibility, resulting in blame for those diagnosed. This has reduced the empathy the public feels for lung cancer patients and has kept lung cancer in the shadows.
Stigma negatively affects every facet of the lung cancer experience. It can make some patients less likely to seek treatment and receive support. Stigma is also linked to disease-related distress and poor health outcomes in lung cancer patients. The impacts of stigma can isolate lung cancer patients instead of uniting them to fight the disease. Many patients blame themselves and do not feel empowered to speak up about their disease, which can make it difficult to build a much-needed army of advocates to fight for more research funding and greater awareness.
"I felt such shame that I may have been responsible for causing myself the lung cancer diagnosis," said LUNG FORCE Hero Susan L. "I felt devastated. Having to face that stigma is such a terrible thing to deal with in addition to facing a cancer diagnosis."
The bottom line is that no one deserves lung cancer, and everyone should receive sympathy and support. The stigma associated with lung cancer took decades to build, and it may take a long time to change the public's mind about lung cancer, which is one reason the American Lung Association created LUNG FORCE. LUNG FORCE aims to increase awareness of the disease, humanize the experience and show the diverse population this disease impacts, in addition to making lung cancer a cause people care about, driving policy change and increasing research funding.
It is also important to show there is hope. Another facet of the stigma affecting lung cancer is the misperception that lung cancer is a death sentence. Some patients have a fatalistic view of lung cancer, and this only further discourages them from seeking treatment or becoming advocates. To counteract this aspect of lung cancer stigma, the Lung Association is hard at work funding important lung cancer research, educating about the progress that has been made due to advances in treatment and early detection, and sharing stories of hope from survivors.
The Lung Association is committed to addressing lung cancer stigma, and we've conducted ongoing research to better understand and address the problem. Our "Addressing the Stigma of Lung Cancer" report synthesizes much of our findings. In order to tackle lung cancer stigma indefinitely, the lung cancer community needs to change the way it talks about the disease. Through our research on stigma, we've identified messaging suggestions for patients, caregivers and advocates. These guidelines can help the community change the way we discuss the disease and in turn, reduce lung cancer stigma.
Lung Cancer Stigma Messaging Guidelines
Educate the public about all risk factors for lung cancer, including exposure to secondhand smoke, radon, air pollution, smoking and family history.
If someone asks, "Did you smoke?" - question why they are asking. Or, take the opportunity to share how that question can be hurtful, even if they didn't mean it that way.
Tell the personal stories of lung cancer patients. Lung cancer patients are much more than their smoking status and their disease. Give the disease a face and a story.
Avoid an over-emphasis on an individual's smoking status. While it may be important to you to share your smoking status when telling your story, be conscious of ways you can use that anecdote to reduce stigma instead of adding to it. Some ideas include:
Describe why you mention your smoking status. Is it to show that anyone can get lung cancer? Or, maybe it is to encourage those who are smoking to quit, or youngsters to never start.
Remind people that no one deserves lung cancer, regardless of their smoking history and that you don't judge people based on whether or not they smoked.
Educate the public about the powerful addictive nature of tobacco.
Confront stigma when you see it or experience it. Many people don't intend to be hurtful, they just don't know the effect of their words and behavior.
Share messages of hope. Sharing your story of hope can make a world of difference for someone else who is experiencing the disease and begin to shift the perception that it is a death sentence.
One overall point to consider is to focus on messages that unite those living with lung cancer. Focusing on shared experiences of lung cancer patients helps bring the lung cancer community together, and empowers other advocates to speak up. When advocates speak up, we can build our army of lung cancer supporters, raise awareness and critical research funds more quickly, and end lung cancer stigma.