The Invisible and Visible Stigma in Persons with Parkinson's Disease

Aim. The aim of this presentation is to discuss the visible and invisible stigma shared by seven men and seven women with Parkinson’s Disease (PD).

 Background. Parkinson’s disease is a chronic, progressive, neurodegenerative disorder characterized by overt physical and inert psychological manifestations. While the cause of PD remains unknown, currently, there is no cure. There are, however, medications and surgical treatments to control symptoms.

 Method. The study employed an ethnographic approach using interview data, participant observations, and fieldwork. Field data were generated from a two year exposure to two Parkinson’s disease support groups in east Texas. The question, “what does it mean to you to have Parkinson’s Disease (PD)?,” attempted to illuminate the experience of everyday life and the existential meaning of what it means to live with this disease.  

 Findings. This qualitative study illuminated the struggle of persons dealing with the uncertainties and fluctuations of Parkinson’s. The daunting awareness that life will never be the same and the stigmatization associated with being different attributed to feelings of isolation. A visible feature of PD and one that was commonly reported by all of the participants was facial masking, whereby persons lose the ability to form facial expressions. The participants’ lack of facial expressions attests to the stigma and mounting isolation. The invisible stigma was that of a changing self, a self with PD, a form of disability, which further compounded the isolation shared by all.

 Conclusions. This qualitative study captured the stigma experienced firsthand from the fourteen participants living with the disease. Society’s emphasis on physical health and function, appearances, including verbal and non-verbal communication perpetuates the stigmatization of persons with PD. Nurses and other healthcare professionals can be more attuned to the visible and invisible manifestations and learn new avenues to address the stigma in persons with PD.