What you need to know about stigma in Parkinson's disease
By Indu Subramanian MD
This month we tackle the topic of stigma in Parkinson’s disease. Would it surprise you to learn that 50% of those diagnosed keep it a secret? Do you know the types of stigma? Do you know how stigma can lead to social isolation? Do you know how to identify and to address PD related stigma? Dr. Indu Subramanian along with her colleagues Dr. Brad McDaniels and Dr. Soania Mathur address all of these topics and more in this months parkinsonsecrets.com blog. The authors along with Dr. Greg Pontone have a new article in Parkinsonism and Related Disorders on the topic of stigma in Parkinson’s.
This is Jonny Acheson’s artistic picture of stigma in Parkinson’s disease.
What is Stigma?
Brondani really nail it in their article on stigma as they discuss definitions and treatments in PLOS One.
The term stigma has been around since the ancient Greeks who cut or burned marks into the skin of less desirable people so they could be identified and shunned. Although stigma remains associated with physical marks, its definition has expanded to include any attribute that leads to pervasive social disapproval or a discrediting social difference that negatively impacts one’s identity. Not only does stigma affect an individual’s sense of self, but it is also considered a significant social determinant of health that contributes to morbidity, mortality and health disparities similar to those from low socioeconomic status (SES), poor social relationships and racism. As such, stigma is among the most frequently discussed major public health concerns by leading health officials, physicians and epidemiologists. Neurological disorders such as Parkinson’s disease (PD) are among the most highly stigmatizing diseases in the world.
Nice image defining types of stigma from the Tennessee Department of Mental Health.
How do we define Stigma?
Community Medical Services offers a definition of stigma in their educational materials: https://communitymedicalservices.org/stigma-and-why-it-must-be-stopped/
Erving Goffman, a sociologist and most well-known expert on stigma, defined stigma as an “attribute that is deeply discrediting” and something that reduces the individual “from a whole person to a tainted, discounted one.” He thought that stigma, which prevents the ability to maintain a perfect public image, connotes an “undesired differentness” that ostracizes individuals from “normal society.” Recently, stigma has been thought to exist when “elements of labeling, stereotyping, separation, status loss and discrimination occur together in a power situation.” Including the component of “power” is critical because of its role in marginalization, oppression, and exclusion that typically accompanies stigma in chronic disease. Stigmatized individuals are disempowered and frequently have less access to resources than non-stigmatized individuals. In other words, an “in-group” must mark an “out-group” as different based on a specific characteristic (e.g., tremor, gait issues).
What are the different types of stigma?
Do you know the 7 types of stigma? Defined recently by: NAMI: National Alliance on Mental Illness www.nami.org
Health-related stigma is defined as “a social process, that is experienced or anticipated, and is characterized by exclusion, rejection, blame, or devaluation that results from experience, perception or reasonable anticipation of an adverse judgment about a person or group.” Underneath the umbrella of health-related stigma, the literature broadly describes two types of stigma: public and anticipated or self-stigma. Public stigma (e.g., social, cultural, enacted stigma) exists at the group level, including healthcare professionals, and stems from the cognitive belief that there are people in society (perceivers) who possess negative views toward the person with a stigmatized condition (target), which can trigger negative emotional and behavioral reactions. Public stigma includes negative attitudes held by members of the public concerning people with devalued characteristics. Anticipated or self-stigma has been described as an evolutionary process consisting of four phases: (1) awareness of a stereotype, (2) agreement with the stereotype, (3) application of the stereotype to oneself, and (4) resultant decrease in self-esteem, which can lead to the “Why Try Effect”. An important consideration regarding self-stigma is that it is a process of the individual accepting and agreeing with the negative evaluation of society and internalizing it, which can result in feelings of psychological distress (e.g., depression, anxiety), demoralization, reduced self-esteem and self-efficacy and decreased help-seeking behaviors. When people feel that others in society have negative thoughts about them, then they also feel negatively towards themselves which in turn negatively affects their mental health.
What is the relationship between Stigma and Parkinson’s disease?
Lin and colleagues recently studied stigma in Parkinson’s at https://www.frontiersin.org/articles/10.3389/fnagi.2022.790897/full
In the media and in popular opinion, PD continues to be represented as a disease of white, old, men who are hunched over, drooling and shaking. The images we use to teach medical students depict older white men, hunched over or in a wheelchair or using a walker. This image has affected a disservice to many patients who are living with PD worldwide who do not fit this stereotype. In fact, many PWP who are younger, are women or are from a different race, have their diagnoses delayed or missed . With the stigmatization associated with PD, many persons with PD (PWP) who are doing well and thriving, do not come forward to tell others about their disease. Hence, the view we have of PD is automatically skewed toward the most severely affected cases - the ones with the most significant disability; thus, propagating the negative image and stigma. An example of this can be found in the life of Michael J. Fox, one of the most well-known PWP and PD advocates, who waited several years before disclosing his PD diagnosis because of concerns about his public image and also he had shame associated with the disease while working as a young actor.
More than half of PWPs try to conceal their diagnosis and report experiencing stigma. There is more stigma with the more visible PD symptoms such as tremor, and PWP utilize a variety of strategies to conceal their symptoms and to avoid stigmatization – they may avoid social interactions or place their hands in their pockets to mask their tremors. Greater risk of stigmatization occurs as the visible symptoms become worse and with those issues considered embarrassing and those which can no longer be hidden; and those folks are unwillingly to reveal. Difficulties in speech, communication and drooling may be mistaken for intellectual disability. A masked face may be interpreted by some folks as being unemotional or uncaring. These mis-judgements can lead to social isolation and withdrawal, which collectively contributes to a negative impact on quality of life. This public stigma can also lead to discrimination, subtle or overt, which in turn impacts quality of life for people living with PD.
How does Ageism affect persons with Parkinson’s?
Nice information on ageism and stigma. https://www.pinterest.com/pin/455708056027192853/
A common misconception is that PD symptoms (e.g. stiffness, slowness) are just a consequence of getting old, however studies of longevity and the aging population have dispelled this myth. Ageism can be conceptualized as negative treatment (e.g., attitudes, stereotypes, behaviors) and discrimination directed toward people solely based on their perceived age, which may further compound PD-related stigma. PWP are a unique population as they are prone to this “double stigma:” being discriminated against due to the symptoms associated with their neurological condition, but also discriminated because of their age. Stigma is not merely a minor inconvenience associated with PD, it contributes to health-related quality of life uniquely and significantly.
The additional social determinants of health such as race, ethnicity and sexual orientation or identification further compound the negative impact of felt stigma (i.e., double stigma). Research has suggested that stigma is strongly associated with intersectionality theory, which posits that lived experience at the intersection of multiple opposed identities (e.g., PWP, LGBTQ, minority status) may synergistically increase the experience of stigma. Additionally, PWP who have comorbidities may also face more perceived stigma and worse QOL due to the added burden of health conditions.
How does Stigma cause Social Isolation?
Nice article about stigma and mental illness appeared in https://www.menningerclinic.org/news-resources/bloggers-confront-the-stigma-of-mental-illness
In PD, stigma increases the rate of depression and anxiety. Research supports that both the public and medical professionals perceive PWP to be less friendly, happy and ‘socially engageable’ due to speech difficulties and facial masking. As a result of stigma, PWP may withdraw socially and isolate, and the result is poor mental health outcomes. In fact, social support has been shown to be protective against stigma for PWP. Loneliness has been established as a common challenge faced by PWP, and research has identified three ways that ageism contributes to social isolation and loneliness: (i) avoidance and withdrawal from social engagement – social rejection; (ii) internalization of the inevitability of loneliness with aging; and (iii) social exclusion resulting from discrimination. Specifically, the fear of potential rejection and being viewed negatively leads people with visible symptoms to avoid social settings out of fear of their stigmatized status and fear of being discovered. The question as to why stigma is linked to negative health outcomes may be explained by the association with isolation, loneliness, and lack of social support.
What are some other psychosocial effects from Stigma in Parkinson’s disease?
Nice paper on Stigma recently published: https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-018-1245-x
PWP have described feeling shame about their diagnosis, which is a manifestation of self-stigma. There may be embarrassment about some of the symptoms, a decreased sense of confidence and worse body image, due to some of the changes associated with PD. Women living with PD (WwP) have described a loss of femininity, feelings of unattractiveness and inability to perform their domestic or caregiving roles, resulting in a destructive self-image.
More than 50% of PWP keep their diagnosis a secret as a tactic to reduce potentially embarrassing or hurtful situations. They may hide their disease from even their closest loved ones and people they care about. Hiding the diagnosis can lead to guilt, isolation and avoidance of social interactions. These negative outcomes can lead to increased self-hate and a lack of self-compassion. Many family members have described feeling of being ‘left out’ and ‘cut off’ from the person living with PD; it becomes the “elephant in the room” – something that is never discussed. The PWP feels a tremendous weight as a result of holding their secret, and this secret can add to more stress and worsen mental health consequences.
What can we do about Stigma for the Person living with Parkinson’s disease?
Nice recent article on how to reduce stigma: https://lifeatleggett.com/2022/10/10/promoting-a-stigma-free-culture/
Though PD motor symptoms are impactful on the experience of stigma, the mediating role of depression and the subjective burden of this disease should not be underestimated. Research suggests that treatments focused entirely on alleviating motor symptoms that do not target the emotional response to PD are inadequate. We must also focus on mental health issues.
Physicians or other members of the medical team may be able to help manage the deleterious effects of stigma by addressing not only the physical symptoms, but also psychosocial pressures. If not physician-initiated, patients must feel empowered enough to bring these issues to the attention of their medical team.
Patient empowerment is key. At the individual level, interventions directed at knowledge, self-concept, self-esteem, and developing coping skills may be helpful. These goals can be achieved through individual counseling and focus. The more structured approach of cognitive behavioural therapy can also be helpful as it provides stress management strategies and challenges negative beliefs normalizing stigma and helping the PWP feel that they are not alone.
Support groups are also valuable in helping those living with PD to improve their self-esteem and coping skills and lessen social isolation. Support groups for PWP are an example of a disease self-management strategy that has garnered increased research attention as a way of helping those affected navigate the unknowns associated with PD. Mentors and “PD buddies” can play a role in educating their peers about their disease through sharing experiential knowledge and normalizing the stigma experience. The sharing of challenges, which includes the exchange of lived experience, the emotional issues and coping strategies, can be an essential resource to overcome fear and stigma. This type of exchange can lead to feelings of peer acceptance, energize those living with chronic illness and foster empowerment and hope. Among the potential treatments demonstrating efficacy in attenuating the negative effects of stigma and improving a variety of measures of positive outcome measures (e.g. depression, emotional well-being, positive affect) in PWP is social support. One recently described way to improve social support and connection is social prescribing, which is one way for clinicians to help patients increase community connections thereby improving health outcomes.
How can we change stigma in Parkinson’s disease on a societal level?
Nice movement and newsletter advocating for a stigma free society: https://gosolo.subkit.com/stigma-free-society/
Underlying all these potential interventions to counter the effects of stigma, is education. On a larger level this includes providing the public with accurate information about the illness, the lived experience and countering false assumptions upon which stigma is based. The World Health Organization’s (WHO), details several recommendations to address and improve care, recovery, well-being and participation of people living with neurological conditions. An important action step in advocacy is awareness raising to improve understanding of neurological disorders and their risk factors, improving access to promotion, prevention, management and care services, decreasing stigma and discrimination and protecting the human rights of people with neurological disorders.
This directive of developing advocacy programs was further emphasized in a technical brief, which recognized the lack of awareness and need for education about PD that can lead to stigmatization and may delay both presentation to health care services and initiation of treatment. In their recommendations, a key action point is to “improve awareness among people with PD, their families and society (with local, population-level solutions) to increase understanding of PD and to change public attitudes and practices, particularly stigmatization and discrimination.” Raising awareness is central to improving the understanding of neurological disorders and their risk factors by: (i)improving access to promotion, prevention, management, and care services; (ii) decreasing stigma and discrimination; and (iii) protecting the human rights of people with neurological disorders. At the population level, using social media and the internet, it is possible to launch advocacy campaigns to combat stigma, improve general education of Parkinson’s and facilitate communication. The presence and impact of social media are significant, with a reach far broader and cheaper than traditional media. Through this means, awareness campaigns that are accurate, informative, and emotionally compelling can widely impact the public and the PWPs.
Managing the Effects of Stigma
Nice information on stopping stigma in this behavioral health clinic in Wisconsin: https://wibehavioralhealth.com/stop-the-stigma-of-mental-health/
Here are the bottomline tips to manage stigma:
Empowerment is KEY!!
Discuss stigma with your healthcare provider and how it is affecting you
Increase mental health options for PWP
Education to decrease stigma associated with mental health care
Increase social support – exercise classes, community organizations, lunches with friends
Connect with a mentor or PD Buddy
Spread awareness of PD
Increase self-efficacy, self-concept and self-esteem through setting and completing small goals.
Formal Interventions: Cognitive Behavioral Therapy, Acceptance and Commitment Therapy and Mindfulness-based Stress Reduction
Increase wellness resources for PWP in their communities – exercise, yoga, meditation, prayer, others
Dr. Indu Subramanian wrote this piece on stigma and is a co-editor of the parkinsonsecets.com blog. She was assisted in this blog by Brad Daniels and Soania Mathur.
Dr. Michael is a co-editor and founder of the blog parkinsonsecrets.com
Jonny Acheson is the web artist for parkinsonsecrets.com and also a doctor and a person with Parkinson’s.