12 Things NOT to Say to a Parkinson’s Patient (or someone with a chronic illness)…

I’ve heard it. I’ve said it. I’ve thought it. I’ve regretted it.

We’ve all said things we wish we could take back. But sometimes we’ve said things not even realizing the impact it had on another person. In the wrong way.

As children we would see someone ‘different’ than us and it caught our attention. Promptly mom or dad (or both) would quietly say, “Quit staring!” So we’d quit staring because it wasn’t polite. As adults, we tend to forget our manners and while children can tend to stare out of curiosity and innocence, adults do it in a different way out of ignorance and misplaced well meaning.

When you have a chronic illness or disability with symptoms that others are able to see, you are naturally the recipient of stares and comments, questions and interest. Most people will graciously answer the questions presented to them. It doesn’t mean it wasn’t rude.

So, if you know someone with Parkinson’s or see someone who you think has it (don’t assume they do), here are some suggestions of things not to say.

  1. “Why are you shaking?” My granddaughter asked me not too long ago why I shake. This is perfectly acceptable. But so did a neighbor I barely knew. And then she (my neighbor) added the question, “Do I really make you that nervous?” Sorry neighbor. You don’t hold that much power over me. This stupid disease does.
  2. “You don’t look sick. You don’t look like you have Parkinson’s.” So, I ask – what is a person with Parkinson’s disease supposed to look like?
  3. “I heard you have Parkinson’s disease.” Now, which trustworthy relationship just became untrustworthy. We all have stories to tell. The thing is – they are our stories. To share another person’s personal health matters with someone else is tacky, to say the least. Unless you have been given permission by the person with the disease to tell all your friends, don’t. Some people have inferiority complexes and will feel now everyone knows and they are the talk of the town.
  4. “I heard there’s no cure.” Uh, right. Thanks for pointing that out.
  5. When I was in high school, I wore one of my favorite dresses – a smock waisted type – to church. The pastor’s son, visiting from college asked me, “Are you pregnant?” I had never even had a boyfriend. A date. I never forgot it. Some things cannot be undone. Don’t ask someone if they have Parkinson’s because if you don’t already know the answer, you don’t need to know.
  6. “It’s all in your head.” Yes, I know a husband really said this to his wife. (Not me.) And, he’s right. It’s all in her head. It’s a brain disease, which is in the head. But, IT’S NOT ALL IN HER HEAD. Who in the world would want to pretend they have Parkinson’s disease? I’d rather pretend to be Sandra Bullock.
  7. “I wish I was on Social Security so I could sit at home all day.” Wow. Yes. Every time I think of this having been said to me twice, I get a little wound up. Where do I start with this one? Let’s see, my SS check doesn’t even cover our housing each month. It’s not “Social Security” it’s disability. There’s a big difference. And do you know all the hoops you have to jump through and how many years it can take to get SSDI? And, people with Parkinson’s don’t sit around all day. If they did, they’d NEVER be able to move. They push themselves to stay moving and they don’t sit around because life has become more precious than before, because now they have Parkinson’s.
  8. “Shouldn’t you take it easy? Sit and read books and not do so much?” Uh, see #7 regarding pushing themselves.
  9. “You’re too young to have Parkinson’s disease.” When’s the best age to get it then?
  10. “God never gives us more than we can handle.” Yes, He does. It’s called strength and endurance training and that comment just isn’t biblical (although I have been known to have said it myself).
  11. “A friend of mine had Parkinson’s disease and they were cured after drinking a pomegranate and spinach mixture.” How much are you making being a spokesman for the person who’s swindling you to swindle me? If there was a cure, Michael Okun told me he’d know about it. If you don’t know who Michael Okun is, well – he’s pretty smart.
  12. “A friend of mine died from Parkinson’s disease. It was an awful thing to watch.” See response to #4.

I admit, having PD for as long as I have, I’ve gotten used to some things and if someone were to ask me if I had PD, it wouldn’t bother me and I’d probably respond in context of educating the person or wondering what I could do to help them. Perhaps I’m too trusting. But, some people aren’t and some are just getting used to the idea of having to live with this new little monster known as Parkinson’s disease. So, with that said, well… Some things are better left unsaid.

2 thoughts on “12 Things NOT to Say to a Parkinson’s Patient (or someone with a chronic illness)…

  1. I remember being in a Broadway audience years ago when my father was in mid-stage PD was having a lot of dyskinesia, and the person in the row behind said some utterly OBNOXIOUS comment like “wow he must be really drunk, he can’t sit still”. Boy did I educated them (not one of my finer moments). And that night, I sadly admit asking the universe to make their life “not so easy too”.

    Thank you for this post and blog. People without PD (and the loved ones), do need to hear and learn how to be kind and humane.

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