Overcoming Stigma with Self-compassion

Erving Goffman, prominent twentieth century sociologist and social psychologist, defined stigma as “the situation of the individual who is disqualified from full social acceptance” (Goffman, 1963). In other words, stigma occurs when someone is labelled and discriminated against, because they have characteristics that some members of society have deemed undesirable (Eccles, et al., 2022). Individuals with neurological conditions and other physical limitations may be especially vulnerable to stigma due to the visible nature of their illnesses. Misunderstandings by the general public further compound issues around stigma, as is the case with people with Parkinson’s disease (PD). While many people have heard of PD, fewer understand the diversity of symptoms that people with PD may experience and, as a result, may misattribute the symptoms to other causes.

Stigma can arise from the actions and attitudes of others, known as “enacted stigma”, or from one’s own internalization of negative stereotypes, called “felt stigma” (Eccles, et al., 2022). The characteristics associated with experiencing greater felt stigma for people with PD are younger age, especially in men, and depression, regardless of gender (Salazar, et al., 2019).

There are several major sources of stigma experienced by people with PD, including:

• Stigma due to symptoms: the symptoms of Parkinson’s are often observable and, as a result, may lead to misunderstandings and incorrect labelling (Maffoni, et al., 2017). For example, a tremor or unsteady gait may be misinterpreted as a sign of intoxication. Furthermore, the loss of autonomy and increasing dependence on others that can accompany advancing stages of PD may also result in felt stigma (Maffoni, et al., 2017).
• Stigma due to communication difficulties: many people with Parkinson’s experience communication challenges, which may lead to feelings of frustration, as well as both enacted and felt stigma (Maffoni, et al., 2017).
• Stigma due to self-perception: as the disease progresses and people with PD require more external help from caregivers, felt stigma may increase if the person with PD feels like a burden (Maffoni, et al., 2017). Changing social roles, such as leaving one’s career for health reasons, also have the potential to increase felt stigma (Maffoni, et al., 2017).

Stigma is a major concern for people with PD, as it has large implications for mental wellbeing. Experiences of stigma are correlated with higher anxiety, stress, and depression among people with PD (Eccles, et al., 2022). Research even suggests that people with Parkinson’s may experience felt stigma without directly experiencing enacted stigma; this suggests that people with PD sometimes internalize negative stereotypes about themselves (Eccles, et al., 2022).

However, self-compassion is a powerful tool that can help people with PD persevere in the face of stigma (Eccles, et al., 2022). Self-compassion is defined as nonjudgmental acknowledgement of one’s own experiences, with an emphasis on kindness, concern, and support (Eccles, et al., 2022). It is an important way to regulate emotions, boost wellbeing, and self-soothe (Eccles, et al., 2022). Individuals with higher self-compassion may be able to more objectively assess interactions with others, as well as positively reframe situations in which they experienced enacted stigma, which can reduce distress and increase feelings of safety (Eccles, et al., 2022). People with PD with higher self-compassion also internalize negative stereotypes about themselves less frequently (Eccles, et al., 2022).

Increasing public awareness and visibility of people with Parkinson’s is important to help improve public understanding of PD and its presentations (Eccles, et al., 2022). That is why advocacy efforts and awareness campaigns are so important – they help to normalize the many expressions of PD, and bring to light that Parkinson’s is a diverse condition that impacts no two people the same way. The Society also works tirelessly so that people with Parkinson’s feel empowered with the tools and resources they need to self-advocate in challenging circumstances. We hear many stories from the community involving situations in which a person with PD faced unjust treatment.

One such story came from Norman, who experienced stigma as a direct result of his PD. While watching a group of female volunteers painting lines for visitor parking spots, a group of individuals misinterpreted Norman’s Parkinson’s symptoms, such as tremor, reduced facial expression, and fixed gaze, as leering. In another instance, the same group thought he was loitering in a hallway, due to his reduced mobility. Someone wrote to the strata anonymously to express how uncomfortable they felt about Norman’s presence.

When reflecting on these incidents, Norman says he felt very angry and hurt. Facing stigma of this nature made him self-conscious of how he interacted with anyone in his building. As a result, he reached out to Parkinson Society BC and his neurologist to get support. While the situations still remain in the back of his mind, Norman now feels he can continue with his day, knowing he has done all he can to speak up and inform others about his experience.

Another story came from Shelly, who faced stigma after ordering a pizza at a local pizza parlour. After placing her order, she returned to her Jeep to wait, when an RCMP officer approached her vehicle and asked if she had driven there. After she said she had, he demanded she sit in the police car and take a breathalyzer test. The pizza parlour employee had reported Shelly as driving while intoxicated because of her hitched gait due to her Parkinson’s. He told the officer that he smelled alcohol on her, even though she and the employee were both wearing masks. The parlour was situated in a very busy area, with plenty of foot and car traffic nearby. Shelly says she felt uncomfortable having the interaction in such a public place, but when she asked the officer if they could move to the nearby alley to speak, he curtly refused.

After the breathalyzer showed a blood alcohol level of zero, Shelly and the officer spoke with the employee. Shelly informed him she had Parkinson’s, and took the opportunity to calmly educate the employee about the symptoms she experiences because of the disease. He admitted the smell he reported was, on second thought, that of hand sanitizer. She says the employee seemed apologetic and ashamed after their interaction and hopes he will be more compassionate in the future. To help herself feel better, Shelly relied on her family and emotional support dog, and treated herself with kindness and self-compassion. Unfortunately, like Norman, Shelly now says that the incident has made her more mindful of how she presents in public with her Parkinson’s.

It is clear that despite our best efforts, more public education and awareness are needed, so that members of the Parkinson’s community can enjoy the safety that everyone deserves, both in their home and in public. Fortunately, there are things people with PD can do to boost self-compassion and help mitigate the effects of stigma. These include:

• Psychological interventions, such as Acceptance and Commitment Therapy (ACT): ACT encourages people to accept their thoughts and feelings in a nonjudgmental way, instead of resisting them (Ackerman, 2022). People with PD facing stigma could greatly benefit from ACT, as it could help them accept the things beyond their control and engage in actions that bring enrichment and joy to their lives (Ackerman, 2022).
• Practicing mindfulness: mindfulness techniques can allow us to gain insight into our thoughts through nonjudgmental observation. In fact, there is growing research into the field of mindful self-compassion, a technique that aims to help individuals cope better with painful experiences by boosting their empathy and kindness for themselves (Mead, 2022). Identifying and changing self-talk patterns is a key component of mindful self-compassion; individuals are encouraged to ask themselves, “how would I treat a friend in the same situation?” (Mead, 2022).
• Using evidence-based resources: the help of a qualified mental health professional can be invaluable for many. Others may prefer to work in a more self-directed format. There are many free, accessible resources available to increase self-compassion, including those found at www.self-compassion.org.

Through Parkinson Society BC, several law firms offer free legal services to members of Parkinson Society BC, for issues such as discrimination, denial of services, and denial of disability insurance. For more information, please contact Jean Blake, CEO, at jblake@parkinson.bc.ca.

Parkinson Society BC would like to thank Norman and Shelly for their candidness and courage in sharing the stories that are featured in this article.

Sources

Ackerman, C. E. (2022, March 29). How does Acceptance and Commitment Therapy (ACT) work? Positive Psychology. https://positivepsychology.com/act-acceptance-and-commitment-therapy

Eccles, F. J., Sowter, N, Spokes, T., Zarotti, N., & Simpson, J. (2022). Stigma, self-compassion, and psychological distress among people with Parkinson’s. Disability and Rehabilitation. https://doi.org/10.1080/09638288.2022.2037743

Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. New York, New York: Simon and Schuster Inc.

Maffoni, M., Giardini, A., Pierobon, A., Ferrazzoli, D., & Frazzitta, G. (2017). Stigma experienced by Parkinson’s disease patients: A descriptive review of qualitative studies. Parkinson’s Disease. https://doi.org/10.1155/2017/7203259

Mead, E. (2022, March 24). What is mindful self-compassion? Positive Psychology. https://positivepsychology.com/mindful-self-compassion

Salazar, R. D., Weizenbaum, E., Ellis, T. D., Earhart, G. M., Ford, M. P., Dibble, L. E., & Cronin-Golomb, A. (2019). Predictors of self-perceived stigma in Parkinson's disease, Parkinsonism & Related Disorders, 60, 76-80. https://doi.org/10.1016/j.parkreldis.2018.09.028

This content was published in the Summer 2022 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.