I recently read an interesting blog by Miriam Bram, a fellow Ambassador for the 6th World Parkinson Congress to be held in Barcelona in July 2023. The title, Shame & Stigma of Living with Parkinson’s caught me off guard. Until recently, I hadn’t consciously considered shame as something that might play a part in my experience of living with Parkinson’s but what I read struck a chord and so in an attempt to understand more about shame, I looked at some definitions.
A painful emotion caused by the belief that one is, or is perceived by others to be, inferior or unworthy of affection or respect because of one’s actions, thoughts, circumstances, or experiences.
An unpleasant self-conscious emotion typically associated with a negative evaluation of the self; withdrawal motivations; and feelings of distress, exposure, mistrust, powerlessness, and worthlessness.
The intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging usually in relation to something we’ve experienced, done, or failed to do.
I then read an article in the Journal of Parkinson’s disease entitled ‘Shame in Parkinson’s Disease‘ and could relate to almost everything in it. It was the following sentence within the article, however, that really caught my attention:
‘Shame contributing to a sense of powerlessness, a feeling of being small, a sensation of shrinking, being exposed, and wanting to disappear.‘
I had recently written a blog ‘The Shrinks‘ about exactly that feeling of being small and a sensation of shrinking. It would appear to be based on my experience of a shame associated with living with Parkinson’s. I had sensed it, I had felt it, I was acutely aware of it but until now, I hadn’t labelled it.
While I’m on the subject of ‘Shrinks’, this week I attended an appointment with a neuropsychiatrist (deserves a blog of it’s own). He listened to my ramblings and he gently suggested that some of what I described could be attributed to feelings of shame.
I have since read that shame causes us to withdraw from activities and no longer engage in situations which leave us open to scrutiny. When experiencing shame, we often try to hide the thing that we feel ashamed of and worry what others think. We don’t want to be the centre of attention, often shutting people out or withdrawing, trying to hide or become inconspicuous. We feel overly sensitive, and worry about looking stupid.
Until recently, if anyone had asked me did I feel shame associated with Parkinson’s, I would have said absolutely not and yet as I reflect more, two previous blogs Two Days and A Little Pizzuberance also describe feelings of shame.
I’m not ashamed to admit that I feel shame but rather, I’m surprised and more than a little intrigued by it. Brené Brown an American Professor who has spent the past decade researching shame, courage, vulnerability and worthiness, writes:
Brené Brown seems something of an expert on the subject and I can see no benefit to feeling shame, so if shame cannot survive being spoken and craves secrecy, then speaking out about it seems a positive thing to do. Staying quiet is rarely an option for me and so, I continue my ramblings, sharing my experiences, knowing that I am not alone and am not being judged.
PS Mum, don’t worry. Parkinson’s may stop me doing some of the things I want to over time but I challenge myself not to allow shame to do the same and you know how much I love a challenge!
Images Source: Clipart Library