Effect of Stigma on Chronically Ill Individuals

Stigma is “a mark of disgrace associated with a particular circumstance, quality, or person” (Oxford Living Dictionaries). Stigma is most often a negative stereotype that causes individuals to feel isolated for having a certain attribute. In particular, the stigma projected onto those with chronic illnesses has created a world in which medical, industrial, commercial, and social stigmas feed off each other. Those living with chronic illnesses face an increased amount of discrimination due to a lack of knowledge and misunderstanding about their conditions. The general population’s treatment of “disabled” individuals stemming from discrimination affects patients’ rate of recovery. These stigmatizations have led chronically ill individuals to deal with exclusion from activities they are fully capable of doing and isolation from the world around them. The stigma associated with chronic illnesses corresponds to a lower quality of life for people living with these conditions due to a lack of social support, an increase in self-stigma, and problems within the healthcare system.

The stigma associated with chronic illnesses has resulted in a lack of social support from society. Society’s lack of social support forms from an unacceptance and fear of being around an individual who is ill. For a majority of the population this fear is, “a natural tendency to pull away from people who are sick, whether [they] do so consciously or subconsciously” because people do not want to become sick (Pg.266 s1). Although patients suffering from chronic illnesses are typically not contagious; the general population’s innate fear of sickness leads to social exclusion for these patients. Not only do people have a fear of sickness, people have a fear of the unknown. Without an explanation for the cause of an illness or disease it becomes easier to just stay away from those living with these conditions. Since, “many chronic illnesses are “invisible”, and often misunderstood, people often make assumptions that are hurtful” (S2). The societal views of chronic illnesses and negative assumptions begin to directly impact the way friends and coworkers interact with these patients. A lot of friends and coworkers will treat patients completely different after finding out they have a chronic illness. People close to these individuals make choices to exclude individuals from social events assuming they are unable to participate or go-out and do certain things. Patients in return choose to take a step back from their social life. It is unfortunate how an, “Illness temporarily disrupts the social support network of the patient and family.”, because these are the times people need support the most (pg.63 s6). Oftentimes patients experience a lack of support in time within their household. Despite the initial response some loved ones began to get upset and angry since they cannot do anything to cure or fix someone they care about. Due to the stigmatization society places on chronically ill patients’, “Family members are also harmed by stigma and may be blamed for causing or contributing to the illness” (pg. 10 s11). When family members begin to feel overworked and judged by society, they then put the blame on the patient. Without support and acceptance from society, friends, and family a sense of self-blame is consistently being reinforced. This debasing environment chronically ill individuals live in begins to greatly impact their quality of life.

Society’s stigmatization and negative stereotyping towards chronically ill individuals leads to an increase in self-stigma. The negative stereotypes that these individuals are weak, lazy, or melodramatic has created a world in which discriminatory actions have become the norm. With this discrimination, patients face discreditation daily and treated as if they are not “normal”. For many patients they begin to, “agree with and internalize social stereotypes” as a coping mechanism (S2). Patients dwell on what they used to be able to do when they were able to prior to the diagnosis of a chronic illness; instead, patients should be focusing on getting better. Many individuals start believing that they are not contributing to society and that they are abnormal or overly sensitive. It is common for chronically ill patients Overtime this feeling of worthlessness and shame has been correlated with patients experiencing psychological distress. Some patients, “irrationally conclude that they have brought the disease upon themselves by being faulty or wicked in some way” (pg.14 s6). This mindset patients go into can lead to social isolation and further social exclusion. As the internalized stigma grows it becomes an even bigger concern when society’s negativity affects people’s recovery rate. Eventually, “the effects of stigma and its resultant social withdrawal may have a greater impact on an individual than the illness” itself (pg.10 s11). Therefore, in order to reduce their experience with stigmatization patients will do everything they can to blend in with society. While out with friends, individuals decide to hide their illness and pretend they are self-sufficient. Many chronically ill individuals will even refrain from telling their family and significant others about their illness. It has become easier for these individuals to create a barrier around themselves than to deal with the world’s social exclusion.

Through this barrier chronically ill individuals place around themselves, their reluctancy to accessing health care and receiving proper treatment leads to a decreased quality of life. During their time of living with a chronic illness, most patients have experienced social stigma whether it was from others’ labeling, discrimination, or stereotyping. After experiencing stigma within their work, friend, and family environments individuals assume society will always discredit their illnesses. Specifically, patients, “who perceive that they have experienced stigma in healthcare settings may be less likely to access care because they do not want to face additional negative treatment” (s3). This anticipated stigma of prejudicial treatment within the healthcare system is a huge contributor to why patients who need serious medical intervention still refrain from getting treatment. The more often medical staff stigmatizes patients the less likely they are to disclose all their symptoms or concerns related to their chronic illness. Although even when patients share their diagnosis and concerns, healthcare providers lack of knowledge and understanding about many chronic illnesses can cause patients to receive improper treatment. The minimal amount of research regarding these illnesses restricts the relativity and amount of information accessible to medical staff. In turn, “stigma can negatively affect medical decision making, and the provision supportive care can become significant source of stress and can increase suffering” (pg.3 s10). for chronically ill individuals. Healthcare providers will usually not take the time to search for answers because of their disbelief of patient’s illnesses. Doctors sometimes make patients internalized and anticipated stigma worse through there dismissive and skeptical attitudes. Rather than medical professionals encouraging patients to access healthcare, patients report, “receiving poor care, being denied care, and being blamed for their illness” (s3). In addition to medical professionals denying patients care, the insurance companies show even more discrimination. The cost of treatment or even medical testing without insurance is too much for most individuals. Patients who look for insurance have, “difficulty finding medical insurance that will cover someone with an established medical diagnosis” (S4). Insurance companies typically believe chronically ill individuals are over-treated, overly medicated, and require too much care. Patients encounter countless issues in the healthcare system especially with insurance companies and doctors which only further renders patients’ chances of improving.

The prolonged lack of social support, self-stigmatization, and problems within the healthcare system due to the stigma associated with chronic illnesses corresponds to a lower quality of life for these individuals. With chronic illnesses accounting for some of the most manageable health conditions, they also have the highest mortality rate in the U.S. Managing these chronic illnesses requires assistance from society and medical professionals. However, the misunderstanding and lack of knowledge about chronic illnesses has resulted in stigma negatively affecting the recovery rate for individuals. Within these individual’s personal life’s, they face social exclusion since they are viewed as “weak” and “melodramatic”. Society’s reinforcement of stigmatization leads individuals to believe the negative stereotypes society has given them. As chronically ill individuals internalize and apply these stigmas to themselves, they choose to isolate themselves from society. This isolation causes individuals to rarely access healthcare for treatment. The healthcare system only further attributes to these individuals’ self-stigma and social isolation by denying them care and blaming them for becoming ill. Chronically ill individuals are usually then left to manage their illnesses alone because of the way society treats them.

Digital Notecards

Source 1:

Beckjord, Ellen B., et al. “Cancer Stigma and Silence Around the World: Final Report”. Edited by Duchover, Yvonne, Live Strong Cancer Institutes, 2015, www.livestrong.org/sites/default/files/what-we-do/reports/LSGlobalResearchReport.pdf Accessed 10 Nov., 2018.

Notes:

“For the study, LIVESTRONG collected multiple sources of data—including an analysis of media coverage, public opinion surveys, and semi-structured interviews—from countries around the world to better understand how cancer is portrayed and perceived”. pg.1

“Communication is critical to decreasing cancer-related stigma, raising cancer awareness, and disseminating cancer education”. pg. 1

“there is a strong stigma associated with cancer or if people do not know what healthy behaviors to adopt, they may not engage in practices that reduce their cancer risk. Individuals may delay identification of the disease if fear of stigma creates a barrier to getting cancer-related symptoms checked by a doctor”. pg.3

“at population level, governments and health systems are less likely to devote resources to reduce their cancer burden if individuals affected by the disease are reluctant to express their needs and concerns or to advocate for themselves or others”. pg.3

“the world, cancer continues to carry a significant amount of stigma; however, there are opportunities to capitalize upon shifting perceptions and positive change”. Pg.1

“This perception often leads to discrimination against the stigmatized person, which in turn results in a loss of status, rejection, or isolation (Ling & Phelan, 2006)”. pg.3

 “stigma can negatively affect medical decision making, and the provision supportive care can become significant source of stress and can increase suffering”. pg.3

“Despite these favorable perceptions, evidence shows that cancer-related stigmas exist and more awareness and education are needed”. pg.4

“Stigma also may stem from inaccurate perceptions of or myths about cancer”. pg.6

Source 2:

LeMaistre, JoAnn. After the Diagnosis : From Crisis to Personal Renewal for Patients with Chronic Illness. Berkeley, CA, Ulysses Press, 1995. Print.

Notes:

This book discusses how being diagnosed with a chronic illness can make an individual feel completely alone and overwhelmed. It explains how to handle those feelings through six stages and eventually learn to live life in a stage of “renewal”. The book sends a message to those dealing with chronic illnesses as well as their family, friends, and doctors.

“A gloomy perspective of resignation, self-denial, and helplessness, sometimes unwittingly fostered by our cultural beliefs”. pg.5 …emotional impact it has on patient

“This attitude of blame accounts for some of the worst psychological abuse of patients by their health practitioners and caretakers”. pg.5

“There is no more effective way to isolate yourself than to continually appear self-sufficient, denying any need for help or comfort from others”. pg.6

“If you are willing to ask for help and you have a wide support network, you’ll have an easier time than if you’re isolated”. pg.8

“Get tired and burned out when it becomes clear that “get well soon” has no relevance to chronic illness”. pg.11

“Many people irrationally conclude that they have brought the disease upon themselves by being faulty or wicked in some way”. pg.14

“Often families are unable to help because they themselves are angry at the patient”. pg.14

“Illness temporarily disrupts the social support network of the patient and family”. pg.63

“The critical issue is that there be a good match between physical ability and expectations of activity”. pg.434

“She was deeply hurt by friends who could not make time for her in their lives-not even for a phone call”. pg.63

“New understanding brings new resilience; it does not make the losses go away”. pg.17

Source 3:

Earnshaw, Valerie A., and Diane M. Quinn. “The Impact of Stigma in Healthcare on People Living with Chronic Illnesses”. Journal of Health Psychology, vol. 17, no. 2, 2011, pp. 157–168. Sage Publications, doi:10.1177/1359105311414952. Accessed 8 Nov., 2018.

Notes:

“particularly harmful within healthcare settings to the extent that they act as barriers to the regular healthcare access that can be critical to controlling chronic illness symptoms”. pg.157

 “People living with chronic illnesses report feeling shame, guilt, and diminished self-worth (Person et al., 2009); embarrassed and odd (Kilinc and Campbell, 2009); responsibility for their illness (Mak et al., 2007); and even dirty and diseased (Conrad et al., 2006)”. pg.158

 “Previous research with a variety of concealable stigmatized identities, including illnesses, has found that greater anticipated stigma is related to increased psychological distress (Quinn and Chaudoir, 2009).” pg.158

“stigma impacted more than the physical health of people living with chronic illnesses – it impacted upon their overall sense of satisfaction with life”. pg.164

 “harmful effect of stigma in healthcare settings on the quality of life of people living with chronic illnesses”. pg.166

“Participants who anticipated greater stigma from healthcare workers, in turn, accessed healthcare less and experienced a decreased quality of life”. pg. 157

“Internalized, experienced, and anticipated stigma within healthcare settings likely act as barriers to care access” pg.159

“This decreased healthcare access may, in turn, undermine the overall well-being of people living with chronic illnesses”. pg. 157

Source 4:

Cashel, Allie. Suffering the Silence: Chronic Lyme Disease in an Age of Denial. North Atlantic Books, 2015. Pinellas Public Library Cooperative.

Notes:

“Viewed Objectively, it’s a natural tendency to pull away from people who are sick, whether we do so consciously or subconsciously”. Pg.266

“Reason for that omission concerned the fact that, out in the “real” world, we didn’t want people to know we had Lyme disease, in case we’d be shunned by society or even dropped from our insurance” pg.266

 “Societal opinions about Lyme negatively affect patient experiences every day, with industrial, medical, commercial, and social perceptions of illness constantly feeding off of each other”. pg.267

 “Sontag’s theories on the societal views of illness also contributed to my confusion, to my lack of feeling integrated”. pg.289

Source 5:

“What Is Stigma?” STIGMA Standing Together Against Fear, Blame and Shame, International Conference on Stigma, 2018, www.whocanyoutell.org/what-is-stigma/. Accessed 10 Nov., 2018.

Notes:

“Stigma is a degrading and debasing attitude of the society that discredits a person or a group because of an attribute”.

 “Stigma destroys a person’s dignity; marginalizes affected individuals; violates basic human rights; markedly diminishes the chances of a stigmatized person of achieving full potential; and seriously hampers pursuit of happiness and contentment”.

 “When stigma is associated with a medical condition or disability it prevents individuals from seeking evaluation and treatment, disclosing the diagnosis to the people most likely to provide support and in following treatment guidelines”.

“Stigma prevents individuals from getting tested for HIV, seeking medical care, disclosing diagnosis and in adhering to treatment and follow up. Fear of social abandonment and losing intimate partners prevents many with HIV from sharing the diagnosis with their loved ones and sexual partners”.

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