What’s the best way to tell others about your Parkinson’s?

When there’s a Parkinson’s diagnosis, there’s a choice: keep it entirely a secret, or let the world know about it.

OK, those are extremes. Most people probably land somewhere in the middle. Maybe they tell close family members about their Parkinson’s right away. Or, after some time they might inform a few trusted coworkers. Or perhaps they start a blog, where the entire online universe can hear about it. (Umm, yeah.)

(Note: This is Part 2. Part 1 is here.)

Two men talking over dinner.

If you’ve been diagnosed with Parkinson’s – or another serious medical condition – at what point should you break the news? And what’s the best way to do it?

The short answer is easy: It’s entirely up to you. What feels right and comfortable should be your guide.

But let’s take a closer look at the two questions.

WHEN to tell others

Receiving a Parkinson’s diagnosis is pretty overwhelming. You may be shocked, depressed, in denial, or anxious – and telling others may be the last thing you want to do.

But your diagnosis is likely to affect others. Those are the people you should talk to first – but only when you feel emotionally ready.

You might want to wait until you have come to terms with the new mountain … or monster … or 80,000-pound weight, or any other metaphor for Parkinson’s that you are confronting. That could take a week, a month, or a year.

Man staring out at ocean by himself.

In my case, I told my family and a few friends, but not until I got a grip, which took a couple of months. After that I kept silent for two years. I just didn’t feel like talking about it with very many people.

One thing I was glad I did, however, was take time to learn all I could about Parkinson’s disease before opening up. That way I was ready to answer questions when I did talk to friends and associates.

HOW to tell others

Revealing your Parkinson’s often takes people by surprise, especially if you have the young onset variety.

Most people I’ve told have little understanding about Parkinson’s. I did, before I found out I had it. I had visions of a 90-year-old man hunched over a walker and who could barely hold a fork or hold his body still. 

While that stereotype might fit some people in advanced stages, many more are living with Parkinson’s as normally as they can. I try to convey that right away when talking to people.

Grandma and child talking at table

How you talk about your Parkinson’s is driven by who it is you’re telling.

  • For your partner or caregiver-to-be, be truthful about what you know and are feeling. 
  • With children, focus on reassurance. 
  • For adult children, aim for pragmatism and optimism.

More tips

For friends, family, and associates, here are some other ways to talk about it.

  • Be honest. If you’re feeling anxious or a little down, don’t hide it. Pretending to be cheerful is likely to make those emotions worse later. 
  • If they ask what they can do to help, thank them. If there really is something they could do, don’t be afraid to accept the offer. But if not, you could respond with “Just ask me how I’m doing once in a while” or “A couple of prayers would be great”  – whatever seems appropriate based on your relationship.
  • If you don’t want people to spread it around, say that. You have no control over whether they will keep the info from others, but at least they’ll know where you stand.
  • Of course, some people don’t have the patience for a litany of ailments. For those types, I try to engage them in a conversation by asking them what they know about Parkinson’s.

Reactions will vary

It’s difficult to hear bad news about loved ones, and there are as many ways to respond to difficult news as there are people. Because of that, prepare yourself for anything. 

Woman talking on phone with computer on lap.

When I was ready to tell my four grown children, I called them on the phone one by one. Their reactions ranged from asking a barrage of questions to crying to accepting it as another step in life.

It may turn out that you are the person doing the consoling. 

It gets easier

Two women talking on a couch.

Talking about something as personal as Parkinson’s disease can be daunting. The good news is that the more you practice talking about it, the better you’ll get at it.

Sometimes it’s scary to introduce the topic. I once talked with a woman in a support group who was distressed because she felt no one in her family cared that she was struggling with Parkinson’s or even asked about it.

“Have you tried bringing up Parkinson’s yourself?” I asked her. She said she hadn’t. I suggested that she may be signaling that it’s a taboo topic. People take cues. If you talk freely about it, they’ll know it’s OK for them to do the same.

Ideally, you’ll find that when you can openly talk, educate, and reassure, you’ll feel less isolated and keep relationships strong. That’s the kind of support we all need.

Part 1: Why I waited two years to tell others


Photo credits, from top: Shane Rounce, Wendy Wei, Pexels.com, Karolina Grabowska, Cliff Booth

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2 Comments

  1. I love your blog, Colleen! It’s just the right combination of inspiration and helpful tips. Keep up the good work!

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