How To Tell People You Have Parkinson's Disease
I was perusing my Facebook account this morning and came across this tidbit from The National Parkinson's Foundation. It's some basic advice on how to tell others you have PD. It's pretty much right on and I would think it also works for other diseases.
Let's take a look at some of their advice and then I'll compare how I did it.
Research indicates that sharing the story of your diagnosis is important. Sharing the diagnosis with others is a personal decision that is different for everyone. Keeping the news to yourself can be stressful. There is often a sense of relief once the diagnosis is shared with others. Go at your own pace, sharing information with people who are most important to you.
Knowledge is power! Learn about Parkinson’s. Attend education classes to increase understanding.
Be prepared for curiosity from others. It’s ok to give basic information and not share every detail regarding the diagnosis. You can help educate others about PD as you tell your story. Avoid giving too much information and provide reassurance. Communicate in a way that is comfortable for you. You may choose to write a letter to friends and extended family instead of verbally communicating the news.
Maintain connections to family and friends by continuing to participate in social and recreational activities.
Writing in a journal may help you work through your feelings and emotions.
Here's how I did it and it's really pretty close to this.
I was diagnosed in late October of 2012. After a short time of freaking out, I started doing the research. If you Google Parkinson's Disease, you'll find over 31 MILLION results. You can get most of the information you need without having to leave home.
I really did go at my own pace on informing people. I could have starting telling family at Thanksgiving. It would have been face to face and I could have wrapped most of the family in one shot. I wasn't ready plus I didn't want to ruin the holiday.
Two weeks later I was ready. My daughters and the three siblings got phone calls. So did a couple of friends. A few more got emails and everyone else found out on a Facebook post. I thought I did a pretty good job with a couple of exceptions. Sorry about those but life goes on!
Next is having some privacy and not sharing everything. Having a Blog on this topic makes this tough but I really do a good job of maintaining a semblance of privacy. Trust me when I say that some of the daily crap freaks me out when it happens.
Participating in social and recreational activities. Hmmm...not so good. There are plenty of nights when I want to go out to just hear some music and it's much easier to blow it off. I really need to stop doing that. Bad winter weather is a good excuse but summer is a month away and that excuse no longer applies. I'm going to better about this...and soon.
Finally....they want you to write a journal. Man, I am the king of the journals. Maybe less writing more actual activity with people? Maybe.
There you have it. Hopefully you'll never need to use this basic guide...but don't bet on it.