I am a retired psychologist, a PwP, and PD community advocate with an interest in raising awareness about psychological issues impacting the subjective wellbeing and quality of life of fellow PwPs, our care partners and our families. 

The following report is the outcome of a series of informal conversations with individuals living with the disease, coupled with a brief review of relevant psychological writings. The focus is on shame and embarrassment. These emotions merit our awareness. If ignored and unattended, they can be the source of significant emotional distress.

Indeed, PwP’s revealed that they frequently face social encounters where they risk experiencing painful embarrassment or shame. To name a few, shame lurks when one drools in public and, as a consequence, one is deemed morally or intellectually deficient; when one’s gait is unsteady and one is misjudged as being intoxicated with alcohol or drugs; when facial masking is misinterpreted as unfriendliness or simply a case of being odd.

Overall, and as a way of warding off potential injury to one’s sense of self worth, PwP’s indicated that they conceal or dissimulate their symptom; they avoid or escape social situations they deem threatening. Some PwP’s might choose to socially isolate.

These claims by PwP’s, it should be noted, are not unfounded: they echo those of sociologist Gerhardt Nijhoff (1995), who, more than 20 years ago, in a qualitative study relying on PD patients’ life stories, observed that PD is viewed by patients as posing a risk for embarrassment and shame.  According to this analysis, social strangers misinterpret a patient’s behavior or symptom. They judged it as peculiar or deviant, signaling some form of norm or rule breaking.  As a result, the PD patient can be deemed as deserving social exclusion—an outcome that is emotionally painful to the patient as it splits that person’s life space and and can culminate in even more painful social isolation.

Similarly, another investigator, nearly 30 years ago, (Lazare, 1987) posited, more generally, that most medical patients view their encounter with medical professionals as posing a risk for experiencing shame, embarrassment, humiliation. Patients come to the clinical office or hospital room aware that diseases are generally understood as defects, pathologies, inadequacies, or shortcomings. Moreover, once in the clinical room patients are expected to disrobe and expose the privacy of their bodies and/or disclose aspects of their private, psycho-emotional life.  They are expected to make public what is private. As a defense many patients avoid these encounters, underreport and /or give edited versions of their felt symptoms and distress.

Further, validating the same point, and more recently, Parkinson’s UK, a PD charity, reported a survey of nearly 1,900 individuals diagnosed with PD. More than one third of them do not disclose their symptoms for fear of experiencing embarrassment or shame.

They feel the symptoms are not socially acceptable. They fear stigma. As a result, they struggle, in a state of social isolation.

There are also references in the literature, that, in general, the topic of shame is a taboo subject in the culture at large. It is typically avoided in clinical and nonclinical settings. People in general, whether patients or health providers tend to dislike and fear an open discussion of the topic. ( Brown, 2008). Ironically, it is shaming to talk about shame and embarrassing to talk about embarrassment.

The psychological literature that was examined showed a lack of specific references to shame and embarrassment as found within the PD population.  It contained, however, abundant empirical psychological studies examining these emotions (Dearing and Tangney, 2011).

•       Shame and embarrassment are ubiquitous, intensely painful and overpowering emotions commonly exhibited by an individual upon realizing that he or she has committed an offense or violated an important social norm. Further, and upon contemplating the transgression, the individual concludes, that he or she is bad, worthless, fundamentally flawed, reprehensible and worthy of contempt. 

•       Shame is characterized by acute self-consciousness; a sense of powerlessness, a feeling of being small, defective or not good enough; a sensation of shrinking, of being exposed, and wanting to disappear.

•       These emotions, when acute, merit professional psychological/psychiatric attention and intervention as they pose a significant threat to one’s wellbeing. They place us at risk for heightened emotional distress, social isolation, or even worse outcomes such as, anger, aggression, anxiety, depression and even self-harm.

•       Shame is not guilt.  Shame arises when an individual, aware of a transgression, concludes, in a sweeping generalization, that he or she is fundamentally flawed as a person, as a self.  Meanwhile, in the case of guilt the appraisal and injunction are confined to one’s behaviors.  “ I am bad” versus “I did something bad.”

•       Shame is similar but distinct from embarrassment.  Both are self-conscious emotions and can be experienced as emotionally distressing and trigger a desire to escape or disappear. As noted, shame, is about serious transgressions. The total self is deemed reprehensible. The emotional distress is acute. Embarrassment, meanwhile, is about minor transgressions or failures in role enactment. The transgression is perceived as a faux pas, as in the case of a forgotten name, an unzipped fly, or tripping in front of an audience. This too can be distressing and trigger a wanting to disappear or exit the field but more often it is experienced as social discomfort. Further, as time passes and we recollect the transgression, we can laugh as if it was a faux pas.  There is no humor, when recalling shame—only a reactivation of distress.

•       Not everyone experiences shame and embarrassment equally. A distinction is made between individuals who experience occasional “in-the-moment shame” and those who are “shame prone” or markedly inclined to view many or most social encounters as potentially shaming or embarrassing.

But there is good news. These destabilizing emotions can be effectively reduced or ameliorated.  Two intervention strategies are worth noting.

Compassion-Focused Therapy ( Gilbert, 200) asserts that shame afflicted individuals are intensely self-critical, self loathing; they actively devalue themselves. They do not know how to activate self compassion, which is the very antidote to harsh self-criticism and self loathing. Consequently, the core of the program fosters the development of self-compassionate skills.

Shame-Resilience Training. (Brown (2008). This is a psycho-educational group approach to ameliorating shame.  It teaches afflicted individuals how to become “shame resilient”—the skills to recognize shame and endure it constructively. This capacity is acquired through empathic interconnections with others, becoming emotionally vulnerable and comfortable sharing shame experiences with others.

Both these approaches are research based. Both are quite accessible as they view change as the outcome of acquiring cognitive or behavioral skills. Taken together, these learned abilities constitute the pillars of a new mindset, a new attitude to confront and disempower shame.

Fellow PwP’s who embark in such project, for example, will be invited to reflect on several themes, such as the following:

•       Recognize your triggers of shame.

•       Shame is about your fears, in public.

•       Where there is shame there is self-blame.

•       Let go of perfectionism.

•       Bouncing back from adversity.

•       Understand your critical self-talk.

•       Dispute harsh self-criticism.

•       Disregard silence—talk back.

•       Live your story—do not hide.

•       Share your fears with empathic others.

•       Accept your symptoms

•       Cease pretending and dissimulating

•       Cultivate self-acceptance.

•       Connect to sources of social and emotional support.

•       Cultivate courage.

•       Practice self-compassion.

•       Say no to isolation.

•       Yes, you are enough; yes, you can

•       End unfair and inaccurate social comparisons.

•       Shame attacks will pass.

•       Join a support group.

•       Embrace humor.

In sum, and to return to the daily life of a PwP, it is replete with occasions to experience shame and embarrassment.  These emotions merit attention as they place us at risk for significant distress. There is, however, good news. They can be ameliorated. In their milder manifestations, shame and embarrassment might resolve by gradually deploying strategies that terminate the silence and avoidance they impose. In their more distressing form they might require professionally guided intervention. Two research-based approaches with a track record of effectiveness were reviewed—works by Brown (2008) and Gilbert (2010). Fellow PwP’s currently struggling with shame and embarrassment are strongly encouraged to explore them.

References

Brown, B. (2008). I Thought It Was Just Me. New York: Gotham

Dearing, R., Tangney, J. (Eds). (2011) Shame in the Therapy Hour.  Washington DC: American Psychological Association.        

Gilbert, P. (2010). Compassion-Focused Therapy. New York: Routledge.

Lazare, A. (1987). Shame and humiliation in the medical encounter. Archives of Internal Medicine, 174 (9) 1653-1658.

Nijhoff, G. (1995) Parkinson’s disease as a problem of shame in public appearance. Sociology of Health and Illness, 17, 193-203.

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Julio F. Angulo, PhD presented at the Fourth World Parkinson Congress. He is a retired psychologist and was diagnosed with Parkinson's in 2009. He continues to serve the PD community locally, nationally, and internationally.

Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®