“You cannot un-ring that bell.” I spoke these words to my wife Tracey as we discussed the pros and cons of sharing my Parkinson’s diagnosis publicly. It had taken me the better part of a year to reveal that I have Parkinson’s to my parents and then to my children, and Tracey listened generously as I labored over when and how to tell others, including our network of friends as well as my boss and colleagues.
Although I know many persons with Parkinson’s (PwP) who chose to disclose their illness immediately, I know just as many who waited, in some cases, for months or even years, before disclosing. Like I did, they delayed ringing the bell.
Those of us who wait do so for good reasons. Living publicly with a chronic and progressive illness such as Parkinson’s comes with risk, socially as well as professionally if one is still working. These risks link with naivety and misperceptions about Parkinson’s, such as when a longtime colleague of mine leaned in over our lunch table the first time we saw one another after I shared my diagnosis publicly and said, “Allan, I’m so sorry you have Alzheimer’s disease.”
When telling others about our illness, we risk being misunderstood, misinterpreted, and even mistreated by those who are ill-informed or ill at ease.
Even so, we can gain a lot, too. In fact, disclosing that I have Parkinson’s has turned out to be freeing — it has relieved the burdens of secrecy and silent suffering. It’s also brought courageous, beautiful souls who also live with Parkinson’s into my life, and shown me that living in solidarity and with a shared purpose is empowering, encouraging, meaningful, and replete with opportunities for happiness and joy. How close and connected you can feel to another human being simply because you share the same insidious disease still amazes me.
Of course, everyone has a different story with Parkinson’s to live and tell, and there is never a one-size-fits-all approach to disclosure. Nevertheless, if I had it to do over again, I think I would have begun sharing my story sooner. I wish I had rung the bell earlier than I did.
I invite you to learn more about my journey toward disclosing my illness, which I write about in three pieces for PDWise, a hub for sharing personal stories, experiences, and wisdom gained from living with Parkinson’s disease. The pieces include, Telling My Parents I Have Parkinson’s Disease; Telling My Children I have Parkinson’s Disease; and Parkinson’s at Work: On Resilience and Purpose.
Also, I welcome hearing from you and learning more about your own story of disclosing your diagnosis. Email me at allan@pdwise.com.
Editor's Note: Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin and, by courtesy, professor of psychiatry in the Dell Medical School. Diagnosed with Parkinson’s in 2016, at the age of 48, he serves on the Board of Directors at Power for Parkinson’s, a non-profit organization that provides free exercise, dance, and singing classes for people living with Parkinson’s disease in Central Texas, and globally via instructional videos. He also serves as a Community Advocate for ParkinsonsDisease.net, writing columns about living well with Parkinson’s. He is author or editor of 10 books on a range of topics related to bereavement, anxiety, and spirituality. His latest book, Counseling Person’s with Parkinson’s Disease, will be published by Oxford University Press in 2021. Follow him on Twitter @PDWise.
Check out The Michael J. Fox Foundation's Guide for the Newly Diagnosed which offers tips for navigating a new Parkinson's diagnosis. And access the Foundation's free downloadable guides on related topics, including Sharing Your Diagnosis at Work (Part I, Part II), and Talking to Children and Teens about Parkinson's.