Social Stigma Surrounding Chronic Illness
By Brent Arakaki and Jewel Ng
Health-related stigma has been a continually complex issue that forms the basis of adversities that many with chronic illness face. In particular, patients with chronic illnesses (e.g. diabetes, inflammatory bowel disease, asthma, etc.) are subjected to stigmas that consequently decrease their quality of life and prevent proper medical treatment. Marginalization of those with chronic illnesses often goes overlooked in society, furthering the misguided perceptions established in settings like workplaces and schools.
So what do these chronic illness-associated social stigmas look like? What effects do they have on the opportunities and lifestyles of these patients? Social stigma abounds in multiple settings, negatively impacting the mindsets of those with chronic illness and reinforcing negative beliefs.
This is reflected in work environments, where sustainable employment is much less likely for those with chronic illness compared to those without. Chronic health conditions oftentimes affect people’s abilities to find and maintain employment. According to the 2015 EU Labour Force Survey, the rate of employment is approximately 30% less for people with restrictive health conditions when compared to people without these conditions. For patients, having chronic illnesses is also associated with an increased perceived chance of being discriminated against in the workplace. As a result, workers with a chronic illness, on average, felt more psychological strain and a decreased ability to complete work. However, participation in work-life is an important social aspect for the well-being of those with chronic health conditions, so being unable to engage in this way may influence the person’s condition negatively. The population with chronic illness is already more susceptible to stress so the effects of chronic illness compound to further decrease the patients’ quality of life.
The effects of social stigma also carry into other settings, such as schools, local communities, and even at home. Many patients withdraw from these settings due to the perceived concept of what it means to live with a chronic illness. The fear of being labeled stems from the detrimental attitudes ingrained in society towards those with chronic illnesses, whether it be in the form of discrimination, prejudice, or stereotyping. In these ways, society has built up a precedent of inequality between persons with chronic health conditions and persons without. Families, friends, and classmates that are aware of the health condition often treat the patient differently, regardless of intent. To illustrate, let us consider the case of a 12-year old boy diagnosed with mild asthma. He is looking forward to the upcoming sports festival and wishes to participate in the 400-meter relay, so he obtains clearance from his doctor to participate. However, despite his doctor’s approval, the boy’s teacher automatically disqualifies him from being on the team due to his asthma. In this example, the teacher assumes that it would be unsafe to let the boy take part in the event, and without the boy’s consent, refuses to let him participate. Regardless of the teacher’s intentions, the negative assumption regarding the boy’s chronic illness and subsequent exclusion displays a form of prejudice and discrimination. The consequences of this treatment can further manifest in poor social interactions, a loss of status, and increased shame in these settings.
The stigmas that are associated with chronic illness have been established over the years and to address this, significant changes in perceptions and behaviors must be made. Especially with the prevalence of chronic illnesses, a change in mindset should be established to minimize the stigmatization of these illnesses. Conversations surrounding chronic illness are difficult, and many that are diagnosed are faced with confronting the harmful assumptions that come with this identity. However, we must also remember that although living with a long-term health problem can affect daily life, it does not mean that we should inherently assume less of those diagnosed.
According to Millen et. al, an effective way to neutralize the stigma brought about by these chronic illnesses is to participate in activities that emphasize the normality of living with a chronic illness. This can be done in a multitude of ways. Starting with efforts to be done by the individual, maintenance of hobbies, controlling the situations in which someone participates, and cognitive strategies such as optimizing and reorganizing priorities are all important things to implement for someone with a chronic illness. All of these strategies emphasize the individual’s social and emotional self, which are imperative in combating negative stigma. Besides these individual activities, there are also group efforts that can be done to help counteract the effects of stigma, and that comes in the form of self-help groups and activist consumer groups. As part of these self-help groups, participants are encouraged to share about their experiences, hence giving a shared sense of community and solidarity. Once again, this consortium of shared experiences would allow each individual to find their voice. Therefore, the burden should also fall on governments to provide the funding and resources for these groups to normalize the identity associated with these chronic illnesses.
Studies into the underlying factors preventing those with chronic illnesses from integrating into society have centered around the analysis of differential treatment based on these health-related stigmas. With this growing insight, it is important to recognize the changes that must be made in order to prevent further speculation and discrimination based on someone’s diagnosis. Negative thinking surrounding what a chronic illness entails has been shown to be problematic in a plethora of settings and this narrow-minded approach must be changed in order to initiate increased inclusivity.
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References
[1] Earnshaw, Valerie A et al. “Anticipated stigma and quality of life among people living with chronic illnesses.” Chronic illness vol. 8,2 (2012): 79–88. doi:10.1177/1742395311429393
[2] Foitzek, Nicole et al. “What Persons with Chronic Health Conditions Need to Maintain or Return to Work-Results of an Online-Survey in Seven European Countries.” International journal of environmental research and public health vol. 15,4 595. 26 Mar. 2018, doi:10.3390/ijerph15040595
[3] “Fostering Community for Those with Chronic Illness.” Discovery Fall 2021, https://magazine.hhd.psu.edu/2021/08/26/project-spoonies-provides-community-for-those-with-chronic-illness/.
[4] McGonagle, A. K., & Barnes-Farrell, J. L. (2013). Chronic Illness in the Workplace: Stigma, Identity Threat and Strain. Stress and Health, 30(4), 310–321. doi:10.1002/smi.2518
[5] Millen, N., & Walker, C. (2001). Overcoming the stigma of chronic illness: strategies for normalisation of a “spoiled identity.” Health Sociology Review, 10(2), 89–97. doi:10.5172/hesr.2001.10.2.89
[6] Salih MH, Landers T. The concept analysis of stigma towards chronic illness patient. Hos Pal Med Int Jnl. 2019;3(4):132‒136. DOI: 10.15406/hpmij.2019.03.00166
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Jewel Ng is a fourth year Biochemistry major at UCLA.
Brent Arakaki is a fourth year Biophysics major at UCLA. Jewel and Brent are both THINQ 2021–2022 clinical fellows.
Visit our website at thinq.med.ucla.edu and follow us on Facebook and Instagram @uclathinq!
