How to Share Health News with Family

Dear Coach,

I was recently diagnosed with Parkinson’s Disease. Only my husband knows about this. We’ve not told our adult children or friends.

I’ve read your book, “Mom’s Gone Now What? Ten Steps to Help Daughters Move Forward After Loss,” and noted that one of the ten steps is about the damage secrecy surrounding disease and/or death can cause families. 

I’m wondering how this might apply to my situation. I’m showing no outward symptoms (tremors) but my sense of balance and peripheral perception are off. I’m taking medication.

I want to do the right thing by my family yet I don’t want them to feel sorry for me or worry about my future health.

What’s your advice?

Signed,

Wondering

Dear Wondering,

The best person I know to quote about Parkinson’s disease is Michael J. Fox, the face of Parkinson’s. He writes, “When I was diagnosed, I spent seven years keeping it to myself, not telling anybody and not learning about it, and I later realized others were isolated and didn’t have a central unifying force that would be their advocate.”

As a result, years later, Fox launched The Michael J. Fox Foundation in order to demystify and normalize Parkinson’s. In addition to pushing hard on the science and raising money for research, Fox wants to take away any shame or sense that the disease should be hidden.

Fox explains in a recent article for AARP Magazine, “Unfortunately, inevitably, it (Parkinson’s) will reveal itself. There will always be people who say, ‘Why do you have to keep telling me about it?’ Well, the fact of my existence is evidence of this disease, and I’m not going to candy coat that for people.”

Perhaps you remember this excerpt from my book: 

I recently read a story of a teenage daughter whose mother waited until a year after her diagnosis to tell her daughter about her breast cancer. The mother explained that she didn’t tell her daughter earlier because she didn’t want her to worry. The daughter felt angry, hurt, and shaken. 

“I felt like an afterthought and wondered if my mom thought I was this fragile child who couldn’t handle anything critical even though I was sixteen-years-old.” 

Later, the daughter wondered if she was that incapable. “The thought laid seeds of doubt in my brain.” The daughter reported that even as an adult she sometimes feels paralyzed by stressful situations and questions her ability to get through them. The damaging result of secrets can last a lifetime. 

Perhaps this is an extreme example but it’s something to consider. Based on this story, here are some questions to contemplate:

- Do you consider your adult children capable of handling the news of your diagnosis? 

- What’s the downside if you wait to tell them? 

- Is this truly about protecting your friends and family or is it about you being in denial? Harsh words, I know, but when you ask a Life Coach a question, you’re going to get the “hard truths.”

I’d suggest going to The Michael J. Fox Foundation website and look for Resources for the Newly Diagnosed. From there, download: “Navigating Parkinson’s: Your Guide to the Early Years.”

Good luck to you on this journey, my friend. May you find comfort in knowing you’re not alone.

Mershon Niesner is a Certified Life Coach and author of “Mom’s Gone, Now What? Ten Steps to Help Daughters Move Forward After Mother Loss” which is available on Amazon; also, locally at Sunshine Booksellers and Keep In Touch. For more information visit www.mershonniesner.com. Email your coaching questions to askcoachmershon@gmail.com. Your identity will be kept strictly confidential.