Fighting Cancer Stigmas
Writer’s comment: I have gained dual perspectives on the world of cancer through my own personal battle and through my experiences as a pre-med student interning on the pediatric floor and the emergency room of UCDMC. In both realms I encountered many fears, concerns, stigmas, and stereotypes that really made me think. The writing assignments in Dr. Mary Waters’ English 101 class allowed me an outlet to explore my own personal experiences. Our final assignment was an argumentative research paper. For this assignment I decided I wanted to explore the social and cultural reasons for the cancer stigmas I had personally encountered and witnessed but I had difficulty getting started. Dr. Waters and my friends and family were very supportive and helpful in my quest for answers and solutions. This writing experience taught me a lot and strengthened my resolve to do everything in my power to fight cancer stigmas and I hope you will do the same.
Instructor’s comment: From her first essay in my English 101 class during Winter 2002, Lisa showed her commitment to wrestling with the subject of cancer not only from a technical perspective but from a human one as well. When she approached me with her idea for a research paper on the stigmatization that cancer patients must suffer in addition to their illness, I recognized that she had an original and important topic, one well worth her time and interest. Because she was willing to undertake multiple revisions, both during the class itself and later after the quarter was over, her final version is both readable and informative, making us rethink our easy assumptions about those afflicted by this far-too-common disease.
—Mary Waters, English Department
Say out loud, “My mother has a illness” or “I have an illness.” The reaction provoked will differ from person to person. Now instead say “My mother has cancer” or “I have cancer” and chills will roll down spines, undertones of fear will creep into voices, and tears will be pushed back. Cancer—how does one word carry so much meaning and fear? The Merriam-Webster Dictionary defines cancer first as “A malignant tumor that tends to spread in the body” (“Cancer”). The definition fails to mention fears of death and images of bald chemotherapy patients that come time to mind with the mention of this word. Merriam-Webster gives a second definition for cancer: “A malignant evil that corrodes slowly and fatally” (“Cancer”). Though the first definition defines cancer the disease, the many stigmas associated with cancer stem from the second. Cancer stigmas are further amplified by cultural biases and taboos surrounding particular forms of the disease. Cancer stigmas damage a patient’s self-image, create fears of how others will view the patient, and lead to emotional and psychological disorders, all sabotaging the battle against the disease.
E. Goffman defines a stigma as a linkage of an attribute and a stereotype in his book Stigma: Notes on the Management of a Spoiled Identity (4). Actual possession of the attribute is not a requirement for stigmatization; rather the attribute need only be perceived (Davies). In the medical world stigmas commonly occur, connecting patients to the negative stereotypes of their disease, their attribute. For example, our society perceives that a patient who is HIV positive must be promiscuous and/or homosexual. Diseases bear “social values,” labeling patients as abnormal or sick, reducing them in the eyes of friends, family, and the general public, and creating certain expectations of the patient’s life style, symptoms, thoughts, and prognosis (Davies). Stigmas adversely affect not only those possessing the “attribute” but the labelers as well.
Cancer represents a natural target for stigmatization because of its many forms, ever changing prognoses, and prevalence in all ages and races, and because of the fear and ignorance surrounding it. A common cancer stigma is that all cancers are terminal: a diagnosis of cancer equals a death sentence. Futhermore, many stigmas surround conversational usage of the word cancer. It is a difficult word both to say and to hear especially when the name and face of a friend or family member is attached to it. This was the case for Jessica Miller, the mother of an 18-year-old daughter suffering from Hodgkin’s disease. Jessica needed to practice saying the word cancer by herself in front of the mirror before using the dreaded word in front of her daughter (Arnold 1). For people like Jessica Miller, the verbalization of the word cancer is as frightening as the disease itself. The act of voicing a specific type of cancer diagnosis may be equally traumatic.
Specific forms of cancer carry specific stigmas. Colorectal, breast, testicular, and prostrate cancers are examples because of the personal/private nature of the affected regions. The natures of these types of cancer make patients both self-conscious of their disease and uncomfortable, inhibiting them from seeking medical attention at the first sign of symptoms, as well as from discussing their disease with family and friends. These feelings are amplified when patients undergo surgery or removal of these personal areas, stigmatizing them as lesser sexual beings. Experts at the 2002 Global Cancer Summit proclaimed, “Taboos that forbid cancer sufferers from speaking of their illness and seeking treatment must be lifted to help fight a rising tide of the killer disease.” Frances Visco, chairman of the National Breast Cancer Coalition, voiced this concern at the summit: “In some countries there is a conspiracy of silence about cancer that we must break; we will save lives if we do” (“Cancer Stigma Must Be Broken Paris Conference Concludes”). Patients suffering from cancer types of a personal nature feel very alone, hide their feelings, and rarely speak out. This reticence counteracts increasing public awareness, fighting stigmas, and promoting early detection.
The most deadly form of cancer is also the most stigmatized. Lung cancer accounts for twenty-eight percent of cancer deaths in the United States (Howser 1). Stigmas thrive on the publicized correlation between lung cancer and smoking. Carolyn Clary-Macy, a thoracic surgery nurse at the University of California, San Francisco, emphasizes that this connection creates a public attitude that “They did it to themselves” and “It’s a preventable illness”(1). But lung cancer is not always self-inflicted or preventable. Non-smokers and former smokers make up fifty percent of patients diagnosed with lung cancer. While tobacco usage remains the number one cause of lung cancer, exposure to second-hand smoke, radon, and certain industrial and organic substances, as well as family history represent additional significant risk factors (“Education: Early Detection And Diagnostic Imaging”). Still, the general public regards all lung cancer patients as the perpetrators of their illness rather than the victims. Deborah Rollins is a lung cancer patient and former smoker with a form of the disease unrelated to smoking. She resists telling people of her disease because of fears that they will assume she’s dying and because of the stigma that “People believe you brought it upon yourself” (Howser 2). The stigma of lung cancer also creates difficulty in gathering financial and media support for fighting the disease. Clary-Macy stresses that companies and patients resist attaching their names or faces to this highly stigmatized disease, creating challenges for raising funds for research, patient services, and public awareness. The devastating effects of lung cancer will not cease until we change the stigmas linked to lung cancer (1).
Cultural context further amplifies cancer stigmas. People Living Through Cancer, Inc. states that Native Americans experience a thirty-percent lower survival rate with a cancer diagnosis than other groups. They often experience social isolation within their own community because of the stigmas of cancer, particularly the myth that a cancer diagnosis is a death sentence. Fears of alienation and lack of support from their extended family, clans, and villages discourage Native Americans from seeking an early diagnosis and treatment (“Cancer Survivorship in Indian Country”). Decreasing the fears of cancer that stem from stigmas will greatly improve cancer prognosis for the Native American community by raising public awareness and rectifying myths.
Cancer also has cultural ramifications in the African American community, particularly in reference to gender. African American men experience a forty percent higher occurrence of lung cancer and a fifty percent higher death rate than Caucasian men do (“Education: Early Detection And Diagnostic Imaging”). Men feel perceived as “fallen angels or fallen soldiers” upon a cancer diagnosis, whereas women feel concerned that their husbands’ feelings for them will change if they undergo surgery (“Breaking the Stigma of Cancer”). Within certain cultures or races, cancer stigmas and misconceptions more significantly affect patients and their perception of their situation.
Concerns about societal judgments and treatment, as well as their perception of their bodies greatly influence how cancer patients handle their illness, including development of emotional and psychological problems. Conflicts regarding appearance and self-esteem fuel emotional trauma for cancer patients. Cancer treatments such as chemotherapy, radiation, and surgery leave patients self-conscious about their appearance. These treatments make them vulnerable to societal labeling as stereotypical cancer patients. In addition, fears of stigmatization and alienation from their family and friends cause patients to pull away from potential support groups. The support group then pulls away in response. This reaction leads to the patient feeling rejected, alone, and full of personal guilt. Cancer patients experience a gamut of emotional disorders including anxiety. A normal response to cancer, anxiety induces insomnia, pain sensation, and nausea. Common anxiety disorders associated with cancer include adjustment disorder, panic disorder, phobias, obsessive compulsive disorder, post-traumatic stress disorder, and general anxiety disorder (“Anxiety”).
Cancer stigmas further link patients to specific stereotypical emotional states or reactions such as anxiety and depression. Additionally, strong emotions and high levels of stress arise from dealing with concerns such as death, body image, changes in lifestyle, and financial and legal concerns (“ Depression”). The common misconception that all cancer patients suffer from serious depression produces two consequences. First, by assuming that a cancer patient suffers from depression, a person is more likely to treat him or her as such regardless of the petient’s actual emotional state. This reciprocally induces a depressed state in the patient. Secondly, if a cancer patient believes depression is a normal part of living with cancer, he or she is unlikely to seek help for treatment of this secondary illness. In Cancer and Emotion, Jennifer Hughes argues that depression is more common in cancer patients than our inclusive population, though many cases go undiagnosed (82). Depression occurs in fifteen to twenty five percent of cancer patients, producing additional symptoms that are both diagnosable and treatable (“ Depression”). These symptoms further impair patients’ lifestyles, making cancer even more difficult to bear. Hughes stresses, however, that depression associated with cancer frequently improves with medication and counseling (93). For this to occur, public awareness of depression and emotional disorders associated with cancer must be raised, encouraging patients to seek help and providing them the resources they need.
Our nation, as well as the international community, strives to fight cancer stigmas by raising public awareness, providing adequate resources for patients and their families, and increasing funding. Positive media and ad campaigns that promote early detection and positive images of patients as fighters, not victims, are among the tactics used. Breast cancer public information campaigns represent a good example of this tactic. A wide range of literature and Internet resources is also available to educate the general public, patients, and their families. Resources and options include therapy support groups, chat groups, treatment centers, new medication and treatment trials, definitions of and information about medical terminology, on-line physicians and nurses, current research findings, success stories from patients, nutritional advice, and opportunities for volunteering and fund raising. Funding is essential to provide patients with resources and to fuel advances in research. Public fundraising, governmental funding, and private donations continually increase, thus facilitating progress. Nevertheless, as advances continue in research, further funding will be necessary to improve early detection and treatment methods.
Despite the many advances made with medical technology, cancer stigmas continue to significantly affect the physical and emotional well being of cancer patients. There is much room for improvement. Treating the disease is not enough. Ignorance and stigmas that keep patients from seeking help and speaking out need to be addressed with conviction and determination. The current plethora of Internet information insufficiently counteracts these problems because people must actively pursue these resources. Many of those who need information the most are not reached. Media and advertisers must rectify the problem by providing positive images and spokespersons, especially for the most stigmatized forms of cancer. Cancer stigmas inhibit early detection and amplify psychological and emotional disorders, thus weakening the patient’s fight against cancer. Stigmas also decrease funding for research and patient resources. All of these factors fuel the up-slope of cancer incidence and death. The World Health Organization forecasts that by 2020 the number of new cancer diagnoses per year will increase from nine to twenty million and the number of deaths from five to ten million (“Cancer Stigma Must Be Broken Paris Conference Concludes”). Allowing cancer stigmas to penetrate society further drives this devastating trend. Patients and the medical community cannot win the battle alone. To push back the rising tide of cancer, the medical community, general public, media, and patients must work together to destroy cancer stigmas.
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Arnold, Janice. “Support Group Helps Remove Cancer’s Stigma.” The Canadian Jewish News 4 June 1998. http://www.cjnews.com/pastissues/98/june4-98/health/health.html.
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Clary-Macy, Carolyn. “Raising Awareness About Lung Cancer: The Tragedy of Lung Cancer.” UCSF Thoracic-Lung Cancer Awareness. 27 Dec. 2001. http://www.ucsf.edu/thoraic/lungcaawareness.html.
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Goffman, E. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice Hall, 1963.
Howser, Jay. “Fighting the Stigma: Lung Cancer Patients Battle Stereotype.” Online Edition Daily Republic. 5 Jan. 2002. http://www.dailyrepublic.com/archives/index.inn?loc=detail&doc=/2002/Jan....
Hughes, Jennifer. Cancer and Emotion: Psychological Preludes and Reactions to Cancer. Chichester: John Wiley and Sons Ltd, 1987.
Link, Bruce G., and Jo C. Phelan. “On Stigma and Its Public Health Implication.” Stigma Conference. http://www.stigmaconference.nih.gov/linkpaper.htm