Why I waited to tell people I have Parkinson’s disease
Getting a Parkinson’s diagnosis right before a pandemic is convenient, in a weird way.
When the world is stuck at home avoiding the spread of illness, there’s a lot you can hide from that world.
Including the fact that you now are dealing with a progressive neurological disease.
That is where I found myself in March 2020, when schools closed their doors, workers set up home offices, and quarantines kept human interaction to a minimum. Officially diagnosed with Parkinson’s disease two months before, I was facing my new reality – but not ready to talk about it with others.
So I didn’t share the news with anyone, other than family members and a few friends. This went on for more than two years. Two years! That’s a long time to keep a secret.
The pandemic made it easy.
No co-workers could see me struggling to control my computer mouse. No one in my church choir could see me trying to hold the sheet music still. No one could stare at my tremorous foot dancing the jitterbug when I sat down to relax.
Because there was no one around me.
I was working from home with only my husband in the house. My secret was safe largely because of COVID-19!
(I don’t mean to ignore that the pandemic was horrifying in many ways. Besides the deaths and sickness, it changed our society. I look back on the pandemic years as kind of a black hole in our collective history. Time just sunk into itself. But I digress.)
So why did I wait to tell?
I knew it would be difficult for some people to hear, especially those close to me. Because of that, I wanted to be ready, to know answers to their questions, to have a sense about what life would be like. I checked out library books on Parkinson’s and read them cover to cover.
I wasn’t about to throw a pity party – people feeling sorry for me was the last thing I needed. I also was afraid the disease would set me apart: I’d be known as the woman who has Parkinson’s disease, not the whole me.
Here’s what I wrote in my journal nearly two years after my diagnosis:
There’s still something in me that believes that PD will define me for the rest of my life. I’ll be that lady with Parkinson’s. My abilities will be underestimated. Pity will greet me through many people’s eyes. Questions like “How are you doing?” could become code for “How’s the Parkinson’s progressing?”
People with a disability want to be known for who they are and what they do, not for their cancer, or their MS, or their stroke recovery, or any other challenge that makes them “other.”
A little R-E-S-P-E-C-T, please.
But time and experience often change mindsets. As I associated with more people who have Parkinson’s, my thinking began to shift from “woe is me” to others who also are struggling.
So I held a fundraiser. Though I was well into my Parkinson’s journey, and I was looking forward to a trip to Africa to climb Mount Kilimanjaro with family members. I saw an opportunity to turn this goal into a way to raise money for research.
That was a tough decision, and a key one, because my “secret” would become known widely.
To my great relief, the reaction to The Reveal/fundraiser was overwhelmingly positive. Not only did the people I contacted generously donate a total of $3,700 toward finding a Parkinson’s cure, but many of them wrote notes of encouragement and understanding. Not a drop of pity or hopelessness could be found in their responses.
I would prefer not to have Parkinson’s disease, but at least I’m comfortable with the fact that I do. With time, I’m learning to “own” it. Being able to confidently talk to others about it gives me a little more control over this disease.
So take that, Parkinson’s.
Part 2: What is the best way to reveal your Parkinson’s diagnosis?
Question: Have you waited to tell friends and family about a new health challenge of your own, and if so, what was the reason? If you’d like, comment below.
