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9 "Harmless" Comments That Actually Hurt People With Parkinson's Disease

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“Words can inspire. And words can destroy. Choose yours well.” — Robin Sharma

Receiving a Parkinson’s diagnosis is not easy. Nor is sharing that news with your friends and family. I would imagine it may be equally as challenging for these friends and family to know just what to say to a newly-diagnosed loved one. Faced with this situation, you hope that you will be able to say just the right thing while also balancing your own emotions and questions. In this moment, it could be very easy to confuse what is helpful to the person with Parkinson’s with what feels helpful to you.

What is Parkinson’s Disease?

To help out those who may mean well, but truly don’t know what to say, here are some friendly reminders about what is helpful — and what isn’t.

Not to say: “You don’t look sick.”

To say: “You look really good. I hope you’re feeling good today.”

Parkinson’s truth… some days, the appearance of a person with Parkinson’s may not outwardly match the traditional signs we think of as “sick.” Also, Parkinson’s truth… Parkinson’s is always with us. All day, every day. Saying “you don’t look sick” minimizes the symptoms we feel every day that are invisible to you. Hearing you say how good we look while also recognizing that we are hiding much of our disease goes a long way in making us feel seen and heard.

Not to say: “I know how you feel.”

To say: “I don’t know much about Parkinson’s. When you’re up to it, I’d love to learn more.”

You’re human. You want to make connections. You want to feel close to those around you. So, you try to make that connection by saying, “I know how you feel.” But you don’t. You don’t have Parkinson’s. You can’t know how I feel.

Not to say: “Let me know if there’s anything I can do to help you.”

To say: “I’d love to make dinner for your family. Would Tuesday evening be helpful?”

An open-ended offer is extremely thoughtful and generous. But, a tangible task and a concrete date allow us to truly determine if it would be helpful. And, it leaves the door open for us to say yes or no. This is a gift we will be thankful for each and every time.

Not to say: “I didn’t invite you because I figured you would probably cancel.”

To say: “I would love to get together for lunch on Friday, but I completely understand if you need to cancel last minute.”

People with Parkinson’s never know how we’re going to feel from hour to hour… let alone from day to day. But we want to be invited and included. We yearn for our former social lives. But we also need your gentle understanding when the unpredictability of this monster intrudes on our plans.

Not to say: “You seem great. Your Parkinson’s must be getting better.”

To say: “I love your shirt/bag/jacket. That color/style/shape looks great on you.”

Parkinson’s truth… it doesn’t get better. Parkinson’s is a degenerative disease. My nerve cells will deteriorate over time… hopefully slowly… and my disease will progress. Are some days better than others? Absolutely! And I celebrate those days every chance I get. But, my Parkinson’s will not get better. Plain and simple. Also plain and simple… I’ve missed you. It’s so good to see you. Let’s chat about that knockout bag.

Not to say: “It could be worse.”

To say: “I’m sorry you’re going through this.”

This one. The intention behind it is sincere. I get it. You’re trying to help me see beyond my own negative thinking and realize that my situation is not so bad compared to other devastating illnesses. But… saying “it could be worse” actually minimizes the very real pain, frustration, isolation and fear I am feeling. An authentic, “I’m sorry you’re going through this,” and, “You’ll be in my prayers,” goes a long way.

Not to say: “Are you sure that you should be taking all that medicine? Have you tried A/B/C/D instead?”

To say: “It sounds like you have done a lot of research and have a great team caring for you.”

Do I like taking so many medications, every day, several times a day? Absolutely not. Because of these medications, do I find a slight respite from some of the debilitating symptoms I currently experience? Yes, I do. Will I continue taking these medications while also researching other options? Absolutely. The most helpful thing you can say or do in regards to this topic is to simply let me know that you’re happy I’ve found something that is working for me.

Not to say: “You’re going to be fine.”

To say: “I would love to help in any way I can.”

Short of a cure, I will be living with Parkinson’s for the rest of my life. This is not a bad case of the flu that will simmer down in seven to 10 days. Or a broken bone that will heal after six weeks in a cast. Help me acknowledge this, help me own this and help me through the roller coaster of my journey.

Not to say: “You just need to think positively.”

To say: “I wish I had something helpful to say, but I’m at a loss right now.”

If you want to help, but don’t know what to say — then simply say that. Simply tell me, “I don’t know what to say.” Not knowing what to say and admitting it is always going to be better than saying something ugly you can’t unsay. Always.

Knowing what to say is never easy. I get it. I’m a people-pleaser… a fixer. I always want everybody to feel good about themselves and I know that I have been in situations where I’ve done just the opposite. I’m hoping my journey and the authenticity with which I try to write can be of some help and guidance for others facing these same unfamiliar situations. And if you find yourself in a moment where any and all words fail… then just simply listen.

Getty image via Milkos

Originally published: October 31, 2019
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