Cancer and Stigma: Behind the Perils of Misconception
In a branch of medicine where the difference between life and death can be marginal, Dr. Vu, a hematologist oncologist, is often the bearer of bad news. “The initial patient reaction [to a cancer diagnosis] has a sense of doom and hopelessness and therefore potential isolation” (Dr. Khai Vu, personal communication, March 28, 2021). In these situations, it is impossible to avoid the bad news. However, misinterpretation of a diagnosis can be consequential, with stigma being a key example.
Stigma can be defined as a mark of shame or lack of acceptance of individual experiences based on qualities or traits deemed undesirable by society. Within the context of mental health, the role of stigma can be crushing, often leading to social exclusion, weak support networks, and low self-esteem . The fear of publicizing one’s condition can extend these consequences further as patients are hesitant to seek health care or consent to treatment. Stigma, however, is certainly not isolated to mental health, but also exists within a wide range of health conditions, including cancer.
The prevalence of stigma within cancer patients can diverge significantly across the disease’s many forms. For lung cancer patients, this stigma may appear as the manifestation of guilt due to the high association of their condition with smoking. Cervical cancer patients, on the other hand, may feel shame, believing that society will blame their condition on their sexual history . In many of these cases, the threat to one’s identity stems from a seemingly irrational perception of how society judges individuals.
Yet, it is possible that these individuals’ intuitions are not without reason, as recent findings demonstrate particular biases in society’s views towards cancers.
Notably, two key factors that determine the level of stigmatization of different types of cancers are perceived controllability and visibility. The first factor is perceived controllability, or when a condition is considered controllable based on an assigned causal attribution. A clear-cut example can be viewed in the context of lung cancer, as a study conducted to understand the role of stigmatization in health conditions found that participants were more willing to allocate funding to breast cancer targeted programs compared to lung cancer targeted programs . Upon further inquiry, participants revealed that their decisions were strongly influenced by the extent to which they believed their respective condition was controllable.
Visibility is another key determinant in the level of stigmatization. Often, this is simply due to an individual’s visual qualities that potentially could reveal signs of a cancer condition. Some examples may range from cancers of the neck or face involving discoloration and bumps to alopecia (balding) as a result of chemotherapy. Within all of these cases, these visual indicators can point out associated health conditions to peers which takes a consequential toll on one’s self-esteem and self-perception .
One study observing cancer patients immediately after chemotherapy (without hair) found that 73% of patients did not feel as self-confident as they had been before chemotherapy . Moreover, close to 47% of the participants listed alopecia as the most traumatic effect of chemotherapy. Clearly, stigma is heavily characterized by one’s expectation of how he or she is viewed by society.
Understanding the consequential effects of stigma on cancer patients cannot be understated. For cancer patients, learning of a diagnosis while holding onto stigma and misunderstanding may affect the treatment they are willing to undergo, as well as the extent of isolation they experience from work and everyday life. For example, there is a documented under-utilization of health care services for lung cancer patients due to a fear of associated blame, shame, and even discrimination . In other health conditions, such as schizophrenia, highly internalized stigma has a strong association with negative attitudes and adherence to treatment . Some patients will seek alternative medicine on their own, which puts physicians, who are tirelessly prescribing evidence-based treatments, in an uncomfortable position. In terms of their daily lives, patients may struggle to return to work after a prolonged, medically related absence. Some patients will opt to keep their cancer a secret from coworkers and peers or seek new employment completely .
As the stigma associated with cancer becomes more apparent, it is critical to ask how we can go about minimizing its destruction on patient’s lives. Because significant misconceptions exist within different communities, providers must ensure a mutual understanding of the causality and prognosis of cancer . The most important strategy is to promote clear communication between doctors and patients: “Like any problem [a patient] encountered before, they can effectively deal or cope with [cancer] by understanding and getting a handle on the problem, which then gives them the insight to make a plan moving forward” (Dr. Khai Vu, personal communication, March 28, 2021). In addition, research has revealed that patients find one-on-one or small group sessions to be particularly efficacious for support.
Patients most highly rated sessions where the group was limited to patients with the same diagnosis and where there was an emphasis on treatment insight and self-care . Simply stated, patient education is key to diminishing stigma from a cancer diagnosis, and alleviating the burden an individual patient faces: “Helping patients relate to their cancer diagnosis as a problem they can realistically deal with, similar to other challenges they previously have had in their lives, lessens the severity of the stigma” (Dr. Khai Vu, personal communication, March 28, 2021).
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