Do you keep Parkinson’s on the Down-Low? My Top Five Pros and Cons
About 50 percent of those with Parkinson’s hide their diagnosis for as long as possible. Do you? If so, why? And if not, why not? How has this worked out for you?
Top Five Reasons I Keep My Diagnosis on the Down-Low*
(Yes, this is why I use a pen name.)
1. TO AVOID STIGMA: I’m still working and I don’t want to be the object of pity, or worse, derision, at work. I risk being sidelined if my diagnosis is known.
2. TO PROTECT CREATIVE FREEDOM: I use a pen name here and elsewhere when writing about my condition because I want to feel free to write about and work through my adjustment to this diagnosis without worrying too much about how others may react.
3. TO AVOID SELF-CONSCIOUSNESS: Once people know, they tend to scrutinize me for symptoms of progression. When I’m self-conscious, my symptoms increase. I don’t like that.
4. TO AVOID AGEISM: Parkinson’s is often stigmatized as an old person’s disease. I’m old but I’m not THAT old.
5. TO PROTECT MY SENSE OF PERSONAL IDENTITY: Finally, and most importantly, I want to live my life as a person who happens to have Parkinson’s not a Parkinson’s “patient.”
Top Five Reasons I’d Like to Shout It Out to the World
1. TO INCREASE ACCEPTANCE: My neurologist tells me that only a neurologist would know for sure if I have Parkinson’s, but what if people observe an occasional symptom and attribute it to alcohol or drug use? I’d rather people know about my Parkinson’s than assume the worst about me.
2. TO MEET MY ETHICAL STANDARDS: The stigma around Parkinson’s is in part caused by its high visibility in the later stages. As people with Parkinson’s know, this disease progresses slowly and many of us work for years after diagnosis. If we hide, we risk increasing the stigma. If we normalize Parkinson’s as just another form of neurodivergence, albeit progressive, we reduce the stigma.
3. TO REDUCE STRESS: I’m a pretty open person so my first impulse is to share. Keeping this important part of my life to myself can be stressful.
4. TO INCREASE AUTONOMY: Acknowledging my diagnosis would allow me to advocate for Parkinson’s research and education more effectively.
5. TO SHARE OUR WORK: This is my favorite “shout it to the world” reason. I’m proud of our blog and would like to invite others in.
For now, I choose to remain anonymous and to tell only family and close friends about my diagnosis. As I move closer to retirement and my symptoms progress, I’ll be more forthcoming. And, of course, at some point, my symptoms will shout out my condition whether I like it or not. I hope by then to be at peace with whatever comes my way.
For references and to read more about stigma, see below:
*down-low. (2023). Cambridge Dictionary.
The Stigma of Parkinson's Disease (2015, February 9). The Michael J. Fox Foundation for Parkinson’s Research | Parkinson’s Disease.
Tsiang, J. T., & Woo, B. K. (2020). The Stigma of Parkinson's Disease: Development and Implications.The Neuroscience of Parkinson’s, 1, 283–294. https://doi.org/10.1016/b978-0-12-815946-0.00017-x
De La Rosa, T., & Scorza, F. A. (2022). Stigma in Parkinson's Disease: Placing it outside the body. Clinics, 77, 100008.
Hou, M., Mao, X., Hou, X., & Li, K. (2021b). Stigma and Associated Correlates of Elderly Patients with Parkinson's Disease. Frontiers in Psychiatry, 12.
Photo: Kate’s photograph of a masked lady painted on a garage door in Europe.
