Parkinson’s disease (PD) is a neurodegenerative disease characterized by motor and nonmotor symptoms, both of which negatively impacting patients’ quality of life (Ma et al. 2016). Tremors, rigid facial expressions, and cognitive difficulties are among other common symptoms experienced by patients (Jankovic, 2008). A significant one experienced by both patients and caregivers that most people tend to overlook is the stigma that arises as a result of those common symptoms. Such a phenomenon affects everyday life and patient’s subjective and relational perception which may lead to frustration, social isolation and consequently negative health effects.
Stigma refers to the negative attitudes (prejudice) and negative behavior (discrimination) toward people who appear different from what is considered normal and accepted. This can be due to appearances or behaviours of the stigmatized person which may result in shaming, isolation and possible threatening of their personal identity.
Since many people are unaware of the physical demonstrations of PD, stigma may arise due to visible symptoms experienced by people living with PD (Hermanns, 2013). Shakiness, the inability to talk or to stand still as well as cognitive decline leads to negative misconceptions in public environments. Some patients share instances of being characterized as lazy or “looking a little slow”. A few described being mistakenly perceived as drunk due to the uncontrollable motor symptoms or the inability to complete tasks.
Stigma may also be a result of relational and communication problems. In addition to being misperceived due to physical behaviors such as tremors, facial muscle rigidity makes it difficult for people living with PD to express themselves and convey their beliefs. This causes progressive frustration, especially with family members or caregivers who have replaced them in discussion or decision making (Chiong-Rivero et al. 2011). Consequently, it is common for patients to complain about not receiving the right time to express themselves and therefore not receiving adequate help or treatment.
Nonetheless, stigma is not only linked to observable characteristics of PD patients but also to the loss of functionality. Stigma may also be self-attributed when patients develop a physical dependency and lose autonomy. Another reason for social stigmatization is due to the common belief that PD is a disease only for old people. This prejudice is strong in society, including family members.
Altogether, stigma results in patients feeling ashamed and embarrassed which often leads to isolation and therefore declined the quality of health.
It is crucial that patients are in contact with their friends and family so that their physical and social needs are met. By doing so, it may guide health care professionals and caregivers to a more fitted and tailored manner of treating the patient.
“[Feeling] better, just empowered, knowing there were people who understood what I was going through.”
– Michael J. Fox
Stereotypes, misunderstandings, shame, isolation, discrimination, stigmatization are a silent, partly visible and partly invisible phenomenon which is necessary to be considered. Disease progression and management are surely affected by stigma, since it may interrupt treatment but also may lead to depressive symptoms (Oehlberg et al. 2008). Furthermore, stigma is intrinsically complex and requires better understanding; it is important that people, who are unfamiliar with chronic diseases, are reached and educated.
We, therefore, recommend the following for both people living with PD and their loved ones:
- Reach out for social support. It was found that family support is important in order to confront difficulties that arise in daily life.
- Participate in mutual support groups. There is strong evidence that stable, sensitive, active and reliable social networks protect people from other illnesses, provide support and guidance, positively impact the timely and appropriate utilization of health services, accelerate recovery, and improve survival rates (Foppa et al. 2018).
- Raise awareness. During the month of April, the Parkinson’s Disease Foundation (PDF) campaign, empowers patients and their families, researchers, health professionals, and others to raise awareness.
References:Chiong-Rivero H, Ryan GW, Flippen C, Bordelon Y, Szumski NR, Zesiewicz TA, Vassar S, Weidmer B, García RE, Bradley M, Vickrey BG. Patients’ and caregivers’ experiences of the impact of Parkinson’s disease on health status. Patient Relat Outcome Meas. 2011. 2011(2):57-70.
Foppa AA, Vargas-Peláez CM, Buendgens BF, Chemello C, Charmillot FMP, Marin M, et al. Perceptions of Individuals with Parkinson’s Disease about Quality of Life. Rev Cienc Salud. 2018. 16(2):262-278.
Hermanns M. The invisible and visible stigmatization of Parkinson’s disease. J Am Assoc Nurse Pract. 2013. 25(10):563-6.
Jankovic, J. Parkinson’s disease: clinical features and diagnosis. J Neurol Neurosurg Psychiatry. 2008. 79(4):368-76.
Ma HI, Saint-Hilaire M, Thomas CA, Tickle-Degnen L. Stigma as a key determinant of health-related quality of life in Parkinson’s disease. Qual Life Res. 2016. 25(12):3037-3045.
Oehlberg K, Barg FK, Brown GK, Taraborelli D, Stern MB, Weintraub D. Attitudes regarding the etiology and treatment of depression in Parkinson’s disease: a qualitative study. J Geriatr Psychiatry Neurol. 2008. 21(2):123-32.