Lung Cancer Stigma: What Is It and Why Does it Exist?
Last updated: February 2020
For many people living with lung cancer, the very first question they are asked (by friends, family and even strangers) is “did you smoke?” Regardless of smoking history, this question can leave a person feeling as though others feel they somehow caused the diagnosis. This is not only unfair, but can impact quality of life, mood, and even a person’s willingness to share their story. This phenomenon now has a name - lung cancer stigma - and advocates, patients, caregivers, and professionals, are working to change it, and change the conversations we have around lung cancer.
The very issue of stigma
So what is lung cancer stigma and is it real? Lung cancer stigma is a feeling imparted by others that one’s disease was self-inflicted and/or their situation is hopeless. Lung cancer stigma can result in feelings of fear, guilt, and blame. Unfortunately, it is very real. The vast majority of lung cancer survivors report feeling stigma, and nearly half report feeling stigmatized by their healthcare providers. This has very real consequences. Feelings of stigma are linked to distress, anxiety, depression and poor quality of life.1 This is true for both smokers and non-smokers. Because lung cancer is viewed as a smoker’s disease, non-smokers experience the same stigmatization as smokers do. Both smokers and never smokers are similar in their rates of anxiety, depression, and quality of life scores.
In 2012, the pharmaceutical company Genentech partnered with leading lung cancer advocacy organizations to launch The Lung Cancer Project to learn more about lung cancer stigma.2 The project began with a survey of 3,000 people in the community (patients, caregivers, healthcare providers, as well as the general public). The study confirmed that people have a negative bias towards lung cancer. 67 percent of those surveyed associated lung cancer with shame, 75 percent associated lung cancer with hopelessness. Possibly even more surprising was that cancer patients, healthcare professionals, caregivers, and the general public were all equally likely to have a negative bias about lung cancer.
Why stigma exists
There are a number of reasons why lung cancer stigma exists. Perhaps the biggest reason is that lung cancer was the first disease to be conclusively linked to smoking over 50 years ago. While anti-smoking campaigns have saved thousands of lives, these campaigns have unintentionally created the unfair perception that people with lung cancer “brought it on themselves.”3 Unfortunately, stigma then becomes a circular process. People don’t talk about lung cancer because of the stigma, which means there are fewer people advocating to end the stigma. There is also a general lack of knowledge about lung cancer. Specific areas where knowledge is lacking include: the low levels of current funding for lung cancer research; the relative impact of smoking versus other causes of lung cancer; and new and emerging treatments for lung cancer.3
The first step in fighting lung cancer stigma is recognizing that it exists. It then becomes important to be armed with information to challenge the stigma. This can at times require being on the offensive rather than the defensive. It requires becoming educated about the disease and new treatments, being actively involved in your treatment, seeking support when you need it, educating others about lung cancer stigma, and advocating against it when you see it happening. It will take the efforts of patients, caregivers, and professionals to end lung cancer stigma and change the conversation about lung cancer. The first question a person with lung cancer is asked shouldn’t be “did you smoke?”, but perhaps rather, “how can I help?”
Beside manner matters! What has your experience been?