"The tendency in medicine – especially in general practice and health education –is to implicate the sufferer in the generation of the disease” -P. Bellaby
Many lung cancer patients, whether they smoked or not, feel particularly stigmatised because the disease is so strongly associated with smoking. In fact, as many as 15% of lung cancer patients are life-long non-smokers, and 50% of patients diagnosed with lung cancer have quit before the time of diagnosis. The association of lung cancer with smoking often results in negative reactions and blame from others, assuming those patients ‘brought it upon themselves.'
This stigma is presumptuous because:
- Smoking is not a bad habit. In fact, smoking is one of the most difficult addictions to conquer. For many people, especially those with less social support or few financial resources, conquering such an addiction can be a very difficult undertaking.
- A genetic component may predispose certain individuals to lung cancer or protect them from it.
- Other factors may cause lung cancer including exposure to radon, asbestos and second-hand smoke.
As a result of this stigma, patients may experience:
All of which can lead to depression or anxiety, affecting quality of life, and possibly increased morbidity. Research indicates that young people with lung cancer may experience more stigma and greater negative reactions than older people, perhaps due to the belief that older people became addicted when smoking was socially accepted and the dangers were not widely known.
- Complex self-blame and intensified guilt and shame.
- Fear of disclosing one’s diagnosis of lung cancer.
- Avoidance of social situations, leading to increased feelings of isolation.
- Increased stress and difficulty coping.
- Threats to economic opportunities and financial problems.
Support groups may benefit lung cancer patients by assisting members to resist stigmatization and victim blaming.
Lung cancer is hidden behind a smoke screen of public prejudice. The double entendre is intentional – smoking is the reason that lung cancer is stigmatized. The public has a negative attitude about smoking, and this negative attitude transfers to the perception of lung cancer and those who are diagnosed with it.
Although the connection between smoking and lung cancer cannot be denied, the stigma persists, in part, because the public continues to view smoking as a bad habit rather than the serious addiction that it is. Whether patients smoked or not, they tend to be blamed for having caused their disease. For many, this blame adds an emotional burden to an already overwhelming situation. It can adversely affect the way they cope and communicate. Those with lung cancer and their loved ones are often hesitant to disclose the disease to others. Many do not reach out for help for fear of being judged and blamed.
In one of the few studies that have looked at stigma in lung cancer, 45 patients were interviewed. Results showed that the stigma had serious consequences. A common theme was avoidance of social situations in order to prevent being asked about smoking or being blamed, be it real or implied. This increases isolation and limits potential sources of support.
"When I told people I had lung cancer, they tended to react with horror and one of the first things they asked is whether or not I smoked,” says Roz Brodsky, a cancer patient who experienced the stigma first-hand. "It's not fair that lung cancer gets singled out. When someone has a heart attack, no one asks them how much fast food they have eaten.”
Some patients in the study also worried that the stigma would adversely affect access to care, and the quality of care they receive. Others in the study felt that the media contributed to the stigma. Stories tend to portray lung cancer in the worst possible light, thereby increasing the public's fear about the disease.
Lung cancer has not received the kind of media attention it deserves. When it is reported, it is usually because a public figure has died, and the person's smoking history is often mentioned up front. This serves to further stigmatize the disease. Success stories rarely get told.
Most people automatically assume that lung cancer patients smoked, despite the fact that about 15% of lung cancer patients never smoked. For these lifelong non-smokers, the sense of injustice can be particularly strong. Morty Sacks, former President of Lung Cancer Canada, stated "My wife never smoked a day in her life, but she never got the benefit of the doubt. Instead of dealing with the disease, we found ourselves dealing with the issue of smoking. It became very draining."
The same stigma is felt by lung cancer patients who quit smoking before the diagnosis, a group that accounts for about 35% of new cases. They receive the same messages of blame and are not offered the commendation they deserve for having overcome an addiction.
Research data and patients' stories show clearly that stigma is harmful. It can be detrimental to the well being of patients and their loved ones. It discourages compassion. Public education is the key to changing the public's perception and reducing the stigma associated with lung cancer.
Part of Lung Cancer Canada’s activities is aimed at providing the public with accurate facts about the disease. It is also working with the media to report on lung cancer in a balanced way, often through the stories of survivors who are willing to step forward.
Social attitudes, though, are resilient and reducing the stigma of lung cancer will take patience. Lung Cancer Canada looks to other diseases such as AIDS, and the fear and stigma associated with it in the early days, as sources of inspiration and determination.