ORIGINAL RESEARCH

The invisible and visible stigmatization of Parkinson’s disease Melinda Hermanns, PhD, RN, BC, CNE (Assistant Professor) College of Nursing, The University of Texas at Tyler, Tyler, Texas

Keywords Qualitative; chronic illness; culture; family. Correspondence Melinda Hermanns, PhD, RN, BC, CNE, College of Nursing, The University of Texas at Tyler, Tyler, TX 75799. Tel: 903-566-7094; Fax: 903-565-5533; E-mail: [email protected] Received: December 2012; accepted: January 2013 doi: 10.1111/1745-7599.12008

Abstract Purpose: To discuss the visible and invisible stigma shared by seven men and seven women with Parkinson’s disease (PD), a chronic, progressive, neurodegenerative disorder characterized by overt physical and covert psychological manifestations. Data sources: An ethnographic approach using interview data, participant observations, and fieldwork was used. Field data were generated from a 2-year exposure to two PD support groups in east Texas. The question “what does it mean to you to have Parkinson’s disease”? illuminated the experience of everyday life and the existential meaning of what it means to live with this disease. Conclusions: The invisible stigma was that of a changing self, a self with PD, a form of disability, which attested to the stigma and mounting isolation. Feelings of isolation were exacerbated by both the stigmatization associated with being different, coupled with the realization that life would never be the same. Facial masking was identified as one of the visible features that were commonly reported by all participants. Implications for practice: Healthcare professionals can be more attuned to the visible and invisible manifestations of PD that are associated with stigma through the incorporation of a holistic assessment to identify perceived stigma in persons living with the disease.

Background In a world of such diversity, the stigmatization of chronic illness/chronic disease remains an unfortunate reality of daily life. And, persons with Parkinson’s disease (PD) are not immune. PD, a relatively common neurological disorder affecting 1.6 million worldwide, is an unrelenting, disabling disease; most notably characterized by the visible symptoms of rigidity, tremor, bradykinesia, and gait disturbance (National Parkinson’s Disease Foundation [NPF], 2012). Invisible symptoms of depression, anxiety, and an altered self-concept may ensue. Goffman’s theory of social stigma (1963) was used to guide this research. The seminal work of Erving Goffman may aid in the conceptual understanding of the perceived stigmatization of persons with PD. The term, stigma, originates from the Greek meaning something bad or unusual about a person (Goffman, 1963). Stigma is “an attribute that is deeply discrediting” and proposes that the stigmatized person is reduced “from a whole and usual person to a tainted discounted one” (p. 3). In Goffman’s (1963) original works on stigma, three types of stigma

are described. In the first type of stigma, physical deformity refers to the visible changes in which the more the deformity differs from society’s norms and culture, the more stigmatizing it will be. Second, character blemishes refer to a societal view that a weakness caused the illness/deformity. Third, the tribal stigma refers to a particular ethnicity or religion in which the individuals are viewed as different from the “norm.” Phillips (2011) refers to the labeling of a disability in which a person may be viewed as damaged goods. People with invisible disabilities are often stigmatized because they are unable to perform certain actions that nondisabled people can do, yet they may look like they are capable of performing those actions. This can be distressing for individuals with a chronic illness/chronic disease because their inability to perform certain tasks may be misinterpreted by others as being lazy or noncompliant.

Purpose The perceived stigma in individuals with progressive neurological diseases, such as PD, has not been

C 2013 The Author(s) Journal of the American Association of Nurse Practitioners 25 (2013) 563–566 

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examined (Burgener & Berger, 2008); therefore, the purpose of this report is to explore and describe the perceived stigma shared by 14 participants with PD.

Methods This study is part of a larger study, which employed an ethnographic approach using interview data, participant observations, and fieldwork. Field data were generated from a 2-year exposure to two PD support groups in east Texas. Fourteen participants (38–82 years old; mean age 68.4 years) with a known diagnosis of PD participated in the main study (Stanley-Hermanns, 1990; StanleyHermanns & Engebretson, 2009).

Data collection and analysis Institutional Review Board approval was obtained. Two years of fieldwork was conducted at two PD support groups. Participant observations and field notes were conducted in addition to individual semistructured interviews that were audiotaped and transcribed verbatim. Transcripts were read and reread and compared with field notes to identify commonalities. Data were analyzed for stigma using thematic analysis. The findings authentically and accurately reflect the 14 participants in this study. Rigor was maintained and findings were validated (see Stanley-Hermanns, 1990 and Stanley-Hermanns & Engebretson, 2009 for full details of the methods).

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population makes an individual vulnerable to harsh criticism as well as possible stigmatization by those who do not have the illness. And, societal views and attitudes toward any disease are important, because they shape the context in which the ill person and their families must live. When diseases are negatively viewed by society or mislabeled, which appears to be common amongst individuals with PD, such as being mislabeled as an alcoholic, there may be less sympathy or support available for the person. There was a process described by the participants as releasing their former selves and accepting who they are now, a person with PD. One participant eloquently stated: “I had to come to terms with the fact that I will never be the same person ever. I’ve come to grips with it . . . I mean I had to give up a lot because of having PD, but I learned to laugh at myself and, sometimes others, when they think I am a drunkard.”

One of the more common stereotypes of PD is that it is a “disease of the old,” yet five to 10 percent of individuals with PD develop it before the age of 50 (PDF, 2011). The youngest participant in this study was 39. A woman in her late 30s, considered to be in the prime of her life talked about the struggles that she would encounter on a daily basis and ways that she learned to adapt. Yet in many social settings, she vividly recalled the harsh comments that were said about her and she said that the comments were really hurtful and that people want to mock other people who are different, and it was clear to her that they just did not understand PD.

Findings The question, “what does it mean to you to have Parkinson’s disease”? illuminated the experience of everyday life and the existential meaning of what it means to live with uncertainties and fluctuations of PD. Feelings of isolation expressed by all 14 participants were exacerbated by both the realization that their lives would forever be altered in addition to the stigmatization that frequently accompanies chronic, progressively debilitating diseases. Although people with chronic diseases often feel stigmatized, the premium society places on physical attractiveness and well-being may present additional challenges for persons with PD because the physical signs of PD, including drooling, impaired balance, shaking, facial masking, or slowed speech, are observable. Many talked about being confined to their home and only leaving home to go to church or to the doctor. This was their everyday reality living with a progressive, unpredictable disorder. In terms of public attitudes and stereotypes, having a chronic disease and being “different” from the general 564

Visible manifestations of stigma Others talked about their facial masking, which is one of the visible features of PD and one that was commonly reported by all of the participants. Facial masking is socially isolating. When individuals lose their ability to communicate, both verbally and nonverbally, society tends to question those individuals’ intentions. This can result in isolation of the stigmatized person, which may further compound the feelings of isolation and stigmatization. By nature, we are social beings living in a social world. Who we are, the way we interact, subtly classifies us into groups. And for the participants in this study, social relationships and communication problems were common complaints. Some shared specific examples of how facial masking affected their relationship with their family as evident in the following comments. The number one complaint my family has is they said that I always look like I am mad. My left side of my face tends to freeze, like a zombie type and I can’t talk sometimes and they always think I am mad or something.

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Another participant shared, “My grandchildren say, Grandma why are you always mad?

A person’s social role is shaped by the responses others have toward the individual. Feeling judged, disparaged, or scrutinized can dramatically influence how persons with PD view themselves. Unfortunately, society tends to stigmatize those who are weak in body (Conrad & Barker, 2010). To conform to society’s views for acceptable ways of being, all 14 participants confessed to disguising the physical manifestations their disease. For example, one woman shared that she would hold on to her purse strap to hide her tremor, while an older gentleman stated that he keeps his hands in his pockets. Although these participants were able to recount methods of hiding their disease, the physical, emotional, and social scars are inescapable. Moreover, the level of anxiety experienced by the participants seemed to directly correlate to the intensity of their perceptions of alienation from society.

Invisible manifestations of stigma The invisible stigma identified among the participants was that of a changing self, a self with PD. Many talked about the psychological manifestations and how appearance affected how they felt about themselves and how others perceived and valued them. Many of the participants were hesitant to tell anyone about their diagnosis. Yet, in the support group, they were able to openly talk about their PD, but outside of the group, they said that they would deliberately try to “mask” their symptoms and admitted to making excuses for their delayed reactions, their slowed gait, and other noticeable changes. The participants shared common concerns of being a “burden” to others. This stemmed from the uncertainty and unpredictability of their disease process of not really knowing what their future holds. It was “the fear of the unknown” that resonated with all—common selfreflective questions included: When will my PD progress? How will others perceive me when the disease progresses? While stigma was prevalent in all participants in this study, the participants were able to accept who they are now, a person with PD. This realization was assisted through a process of releasing aspects of their former self while simultaneously preserving the present self with PD, accepting who they are now, a person with PD. Spirituality, surrendering to a Higher Power, was one of the processes that aided in the releasing their former self (Stanley-Hermanns, 1990; Stanley-Hermanns & Engebretson, 2009). The difficulty for most was the misinterpretation of their true feelings by society. The participants were able

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to persevere, but the lack of understanding and the harsh reality of society was in the forefront of their minds. The likelihood of continued stigmatization may ensue because of the progressive nature of PD, because an individual may progress to total disability in which the individual may be socially inept and unable to walk or talk. The visible and invisible signs of stigma were further validated in one of the drawings provided by one of the male participants, who was diagnosed with PD in his 40s. This drawing illustrated what it is like living with PD. In the first frame, he is at home alone, working at his computer. In this scenario, he stated that he feels “normal.” The second frame reveals him standing alone, feeling depressed, and socially isolated. During this time, he drew himself like others see him, looking frail. The last frame shows him talking with another person, with a notation of the position of his arms. He makes frequent attempts to hide his tremor, and this gesture can be seen in this frame. The two frames illustrated in his drawing depict the stigmatization that he says he often feels when interacting with others who do not have PD.

Discussion All 14 participants experienced the stigmatization of living with a progressive neurological disorder. And, the extant literature confirms the real existence of stigma in persons with PD (Moore & Knowles, 2006). The participants’ insight into their illness, being attuned to their manifestations of PD by listening to their “body” assisted in their ability to successfully negotiate day-to-day management and thus develop ways to manage their PD. This premise of being attuned to one’s own body corroborates Mayor’s (2006) research in which individuals become experts about their own bodies as they navigate through the day-to-day demands of living with a chronic illness. Additionally, evidence supports a partnership between patients and healthcare professionals is important in effectively understanding the illness experience of persons with chronic illness (Mayor, 2006). Therefore, a reciprocal partnership may aide in the understanding of the perceived stigma. While the participants in this study experienced stigma, they all found ways to navigate day-to-day life while maintaining that they are the same person they were, with a minor adjustment. The participants’ ability to cope with PD was congruent with the concept of personal transformation reported in Paterson, Thorne, Crawford, and Tarko (1999). In an effort to address stigma in chronic illnesses, Rao and colleagues (1999) developed an instrument, Stigma Scale for Chronic Illness (SSCI), to assess the stigma, which may be effective in identifying stigma in persons with PD. 565

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Practice implications While the symptoms may vary from person to person, evidence attests to the complexities of PD, a multisystem disorder that affects every aspect of an individual’s physical, psychological, and social well-being. What is known is that the variation of symptoms from person to person makes the treatment of PD exigent. While medications and surgical treatments aid in the management of the visible parkinsonian symptoms, the identification of the invisible symptoms remains a challenge. Therefore, healthcare professionals need to be aware of possible PD stigma. The perceived stigma of PD coupled with negative attitudes may deeply affect one’s psychological wellbeing (Moore & Knowles, 2006). One way to address these negative attitudes is through dispelling myths about PD. Nurse practitioners are in a primary position to advocate for a paradigm change by educating themselves and others about the visible and invisible stigma associated with PD. Implementing a holistic approach to care, assessing the whole person, and/or incorporating an instrument, such as the SSCI may not only assist in understanding the complexities of PD, but also unveil the visible and invisible stigma of PD as well as other neurological disorders. Seminal works of Florence Nightingale implored nurses to be mindful of the “whole” person, caring for their physical, mental, emotional, and spiritual well-being (King & Gates, 2007). Additionally, therapeutic interventions that healthcare professionals may suggest are journaling and PD support groups for the person with PD as well as their caregivers.

Conclusion This qualitative study captured the stigma experienced firsthand from the 14 participants living with PD. Society’s emphasis on physical health and function, appear-

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ances, including verbal and nonverbal communication, perpetuates the stigmatization of persons with PD. Future nursing research is needed to develop effective interventions to reduce stigmatization and improve the quality of life for persons with PD.

References Burgener, S. C., & Berger, B. (2008). Measuring perceived stigma in persons with progressive neurological disease: Alzheimer’s dementia and Parkinson’s disease. Dementia, 7(1), 31–53. doi:10.1177/1471301207085366 Conrad, P., & Barker, K. (2010). The social construction of illness: Key insights and policy implications. Journal of Health and Social Behavior 51, 67–79. Goffman, E. (1963). Stigma: Notes in the management of spoiled identity. New York: Prentice-Hall. King, M., & Gates, M. (2007). Teaching holistic nursing: The legacy of Nightingale. Nursing Clinics of North America, 42(2), 309–333. Retrieved from CINAHL database. Mayor, V. (2006). Long-term conditions. 3: Being an expert patient. British Journal of Community Nursing, 11(2), 59–63. Moore, S., & Knowles, S. (2006). Beliefs and knowledge about Parkinson’s disease. E-Journal of Applied Psychology: Clinical and Social Issues, 2(1), 15–21. National Parkinson Disease Foundation. (2012). Retrieved from http://www. parkinson.org/site/apps/s/content.asp?c=9dJFJLPwB&b=108269&ct= 1574035 Parkinson’s Disease Foundation. (2011). About Parkinson’s. Retrieved on November 1, 2012 from http://www.pdf.org/AboutPD/ Paterson, B., Thorne, S., Crawford, J. & Tarko, M. (1999). Living with diabetes as a transformational experience. Qualitative Health Research, 9(6), 786– 802. Phillips, M. J. (1990). Damaged goods: Oral narratives of the experience of a disability in American culture. Social Science and Medicine, 30, 849–857. Rao, D., Choi, S. W., Victorson, D., Bode, R., Peterman, A., Heinemann, A., & Cella, D. (2009). Measuring stigma across neurological conditions: The development of the Stigma Scale for Chronic Illness (SSCI). Quality of Life Research, 18(5), 585–595. doi:10.1007/s11136–009–9475–1 Stanley-Hermanns, M. (2008). The illness experience of persons with Parkinson’s disease. Doctoral dissertation, The University of Texas Health Science Center at Houston. ETD collection for Houston Academy of Medicine-Texas Medical Center, AAI3308879. Stanley-Hermanns, M., & Engebretson, J. (2010). Sailing the stormy seas: The illness experience of persons with Parkinson’s disease. The Qualitative Reports, 15(2), 340–369.

The invisible and visible stigmatization of Parkinson's disease.

To discuss the visible and invisible stigma shared by seven men and seven women with Parkinson's disease (PD), a chronic, progressive, neurodegenerati...
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