Shame and Stigma of Living with Parkinson’s
Being diagnosed with Parkinson’s disease at age 44 came as quite a shock. I was devastated and filled with dread. My only association to Parkinson’s at that point was an image of a Rabbi from my childhood who stood stooped over, hands shaking and a shuffle walk. I soon learned the term YOPD or Young Onset Parkinson’s Disease. And, yes, now I was a member of this fast-growing club.
At first there was denial, which I have slowly overcome with the help of my Parkinson’s symptoms revealing themselves before I was “ready.” I felt shame in my inability to control my body’s movements. No-one else in my community had a chronic illness that presented itself so vitally. I began to cling to my former identity as a healthy person, but, in reality, I had to accept that I was in the neurodegenerative disease bucket. Over time, it’s now been 13 years since my diagnosis, I have mastered denial, but I continue to tackle feelings of loss and grief, while simultaneously navigating the waters of acceptance.
The shame and stigma of having Parkinson’s disease has followed me through my journey. It happens when I try to smile for a picture and realize my right cheek doesn’t lift. Or when I’m trying to stand still while my body is wracked with tremors. The more I try to find stillness, the shakier I become. Or when medications wear off and I suddenly lose control of my gait in the middle of Central Park. Like a shadow, shame is lurking, always ready with a comment, a soft blow to the ego. It tells me I am part of the marginalized, the handicapped. That I have been robbed of my identity.
My secret weapon has been taking control of this inner voice and creating a positive mindset. A positive shift in my attitude toward having Parkinson’s has enabled me to move toward what I call “Radical Acceptance:” the act of living authentically with my vulnerabilities embraced, including Parkinson’s and all of it’s symptoms and limitations. I know I can’t control the fact of my diagnosis, but I have a say in how I respond to it and live with a chronic illness. I choose to see what I can do, rather than what the disease has taken away.
As a Parkinson’s Advocate and Ambassador for 6th World Parkinson Congress (WPC) in Barcelona June 7-10 2022, I share my story with the community and spread the word about Parkinson’s. What I’ve learned is that there is an education deficit when it comes to Parkinson’s disease and this keeps the stigma alive. To help eradicate the shame that goes along with carrying this disease, we must use our voices, both locally and globally, to raise awareness of Parkinson’s disease. Organizations like the WPC and PD Avengers help galvanize the Parkinson’s community, including both Parkinson’s Advocates and those serving the community, to speed the search for a cure.
Miriam Bram was diagnosed with Parkinson’s in October 2008, at the age of 44. She has a background in public relations and is also a holistic health counselor. Miriam lives on the Upper West Side of Manhattan and in Amagansett, New York with her husband, two daughters and Winnie (a Cavapoo). She serves as an Ambassador for the 6th World Parkinson Congress (WPC) in Barcelona June 7-10, 2022. She also attended the 4th WPC in Portland (2016) and the 5th WPC in Kyoto (2019). Miriam enjoys cycling, swimming, yoga, and hiking.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®