Who Should I Tell About My Parkinson’s Diagnosis?

When we’re told we have Parkinson’s disease, we’re often taken by surprise. Sure, we may have known that something wasn’t right inside our earthly shell, but we didn’t want to face the possibilities of what it might be. So, sometimes we’ll counter a surprise Parkinson’s diagnosis by entering the world of denial. 

We refuse to accept the fact that now we live with a chronic illness that may draw unwanted attention to us. Instead, we try to come up with all of the different scenarios that could be plaguing our body with aches and pains, shaking and wobbling, stiffness and shuffling, and the list of ailments — seen and unseen — can go on and on.

A woman in a Facebook group I belong to posted about her indecision regarding whether to share news of her Parkinson’s diagnosis with others. Do other people with Parkinson’s disease feel like they are being observed to see if they have telltale signs of the disease, thus giving their diagnosis merit? 

At the end of the woman’s inquiry, she made a good point about going public with a diagnosis: You can’t untell who you tell. 

When to open that book

In response to the question the woman posed, one reader replied that they had told everyone, claiming there was nothing to hide or be ashamed of. While many of us are open books on our journey with Parkinson’s, others are reluctant to let the entire world know, and they only open up when they feel they can no longer hide.

Another said they shared the news with everyone they knew within a month of being diagnosed. Their reasoning was similar to another comment: “I waited almost 2 years before going public. … I kept a heavy burden inside … that was lifted when I no longer hid my diagnosis. All my fears were unfounded.” Another positive comment noted that sharing a diagnosis is a risk, “but isn’t everything in life?”

Many of us who have lived with Parkinson’s for quite a while might put it like this: Become comfortable with your diagnosis first, then start sharing your news. Others might say: Share your diagnosis, and you will begin to feel more comfortable. 

Be careful who you tell

We will come across those who mean well. They will inform us of the latest miracle cures, the latest diets for people with Parkinson’s, the latest herbal remedies, and more. You will begin to wish you hadn’t said a word. But that’s not how life works, is it? Things just slip out, and you can’t untell who you tell.

If you’ve been cautious and selective about who you tell, many might recommend making the news public once you’ve wrapped your head around your diagnosis and accepted this crazy disease.

Looking the part

Every person with Parkinson’s has a story about their experience living with this disease. You will, too. Some stories will be sad, and others will be retold with accompanying boisterous guffaws for years to come. These guffaws will offset the times you wish you had never told so-and-so about your diagnosis.

But you know, so-and-so would have found out sooner or later. They probably would have walked up to you and said, “You don’t look like you have Parkinson’s.” And instead of responding in a snarky way with, “Oh yeah? What is having Parkinson’s supposed to look like?” you just smile and realize they may be right, and that could be a very good thing.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.