Telling People I Have Parkinson's.

Have you thought about should you tell people you have Parkinson's? Right away, I told some people who were important to me. I didn't tell some people who casually asked how I was doing.  But what about friends who mean it when they ask, how are you, but are not expecting to hear major news? 

The first time I called, the Parkinson Foundation Helpline,  Linda, at the helpline, had spoken of being careful who you told.  That people had limited ideas about Parkinson's and they are often negative. That there are many hopeful things going on with research and new ideas for coping but most people don't know that. At the time I didn't think about what she said. 

Yesterday, I told a friend. She had known 2 people in the past with Parkinson's and had sad feelings about them and their experience. Her recounting of their stories was not good for her or me.

 Last night I thought about why I told anyone about it. What did I want from letting them know?   Not sympathy and not to make them feel bad. I'd done that once already to an acquaintance who I saw the day after I got my diagnosis. She asked how I was doing and I told her.  I saw her not know what to do or say. I felt bad for having told her. She was gobsmacked!

So why tell anyone? I think I want to tell people to have a connection.  So they know what is going on in my life.  Because even though I've been told or read the expression “You are not the disease,” it has a pretty big impact on your life.  

But who do I tell, those that need to know? Because I am doing active things with them? 

Who needs to know?

Why do they need to know?

Why do I want to tell them?

What do I want out of telling them?

How will it impact them?

Is it important or necessary for them to know?

I don't have answers yet, but I am working on it. 

One joyful moment came out of these musings, I realized that I wouldn't trade my life for anyone else’s.

That was a wonderful thought and made me very happy.

Cheers,

Nancy

Footnotes From Corrine

Such good questions Nancy.  Sometimes people just don't know how to react and either overly share or fumble with sympathy, or withdraw.  

About Sharing Your Diagnosis has some good tips.

I have my own complex feelings about the saying "you are not your disease"

In some ways I think it feels rather dismissive or an attempt to redirect because you get lost in a pity party. Sometimes though I think we have a right to a pity party now and again, rather than bottle it up.  

I just know for a short while when I had breast cancer and I had my own version of snarky I called shitlump "I WAS my disease" because my whole life centered around dealing with it emotionally and physically.  So yes, it's complex.