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Patient-Centered Guides

The Stigma of Lung Cancer

Written by Karen Parles, librarian and lung-cancer activist

"Prior to my lung cancer diagnosis, I was an art librarian at the Frick Collection. After treatment, I took classes (medical librarianship, evidence-based medicine, advanced Medline searching) and transformed myself into a medical librarian.

"Following my lung cancer diagnosis, I was appalled to discover the dearth of information available for lung cancer patients. As a research librarian, my instinct was to learn as much as possible about my disease, but the lack of patient information made this task difficult. After completing my treatment, I decided to create a website www.lungcanceronline.org. devoted solely to supporting the information needs of lung cancer patients and their families.

"While my ongoing work with other patients has been extremely rewarding, what I have learned about the politics, economics and realities of lung cancer has sickened me. Treatment and support services for lung cancer lag behind those of other major cancers due to the smoking stigma associated with this disease. A constant reminder of this is the inevitable question people ask me when they learn I have lung cancer, 'Did you smoke?' Despite having never smoked, I still resent this question, and wonder why people with coronary artery disease aren't confronted in the same way. Many patients do feel guilty about causing their lung cancer through smoking. This guilt, combined with the public prejudice against people with a self-inflicted disease, serves to stifle and weaken those who could best advocate for increased support for lung cancer. On a personal level, this lack of public empathy and support is demoralizing for those of us fighting a deadly disease.

"Another result of the smoking stigma is the lack of awareness and fundraising events-there are no walk-a-thons, no golf outings, no wine tastings, no hospital gala events benefiting lung cancer research. Celebrities are reluctant to associate themselves with a smokers' disease. Most notable is the striking lack of coverage in the media for the #1 cancer killer.

"Tobacco companies continue to play an unconscionable role in perpetuating smoking among young people. Over 90% of smokers begin smoking as teenagers, a deadly addiction that persists into adulthood. Whenever lung cancer is discussed, 'smokers' are cited as its victims. A 'smoker' is an abstract notion, not a person with a life-threatening disease, worthy of caring and support. In fact, the majority of people who are diagnosed with lung cancer are not smokers, but former smokers and never-smokers. By standing up and speaking out, all of us with lung cancer can put a 'face' on this deadly disease and bring about the public support necessary for increased funding of lung cancer research and support services."


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