I’ve spent the last several years listening to stories from the Parkinson’s disease (PD) community. More than just listening, I developed two programs that help people discover, play with and ultimately share their stories. One theme that has been constant is the frustration many people feel when they share they have PD with someone who doesn’t know. It is personal information that some hide for years because they fear the reaction or stigma associated. One common response is, “I’m sorry”. This is a natural and understandable reaction on a human level. Saying you’re sorry has to do with sadness and regret and sometimes is offered even when you have no involvement in whatever caused the issue, in a way of trying to connect to perceived pain.
The problem, in the case of people with PD I have spoken with, is “I’m sorry” can feel like pity. Pity, according to Brené Brown, has a way of separating us rather than bringing us together. It can point out the differences between us. “You have that. I do not. I’m sorry.” And if that’s where it stops, then that’s where we stand, disconnected.
I asked people in one of my Day One writing classes how they felt about pity when they shared that they have PD. Almost everyone responded immediately by shaking their head. Then one gentleman spoke, “Pity sucks”.
It reminded me of my dad, who was diagnosed with PD back in 2001. While he never hid that he had it, he didn’t advertise it either - not until I did that for us by taking him out on a two month, 20,000 road trip to see a game at each of the 30 Major League Baseball parks. So began the Boys of Summer documentary series, where we learned what PD was and what our path with PD might look like going forward. No one knows for sure, of course, as PD manifests and progresses differently for everyone. Because it is such a mysterious disease, one of the best things we can do is remain curious and keep exploring. While my dad isn’t the most talkative person, he still loves to connect - to provide value and support. He wants to be the helper, not the helped. Frankly, pity pisses him off.
It’s good information to keep in mind when reacting to a person who tells you they have PD. Instead of offering even a well-intentioned “I’m sorry”, the better reaction may be to say, “tell me more”. I’m sorry is a stop sign. Tell me more is a green light. In a storytelling sense, it’s showing someone who has made themselves vulnerable that you’re with them - connected. And that’s a great path to understanding.
Learn more and connect at one of our online Jam for Joy improvisation classes (Tuesdays at 10a, Thursdays at 4p - all times pacific) or Day One writing classes (click here for schedule).