How others (and I) can best respond to a difficult diagnosis

For over 15 years now, I’ve been on the receiving end of all sorts of reactions when it comes to my husband and his early-onset Parkinson’s disease. Strangers are typically caught by surprise to hear that he was diagnosed at age 38, and they usually don’t seem to know how to respond.

I’m usually offered sympathy or a sad face, which I’ve grown accustomed to. While sympathy is the last thing I need, I try to be kind while quickly changing the subject and shrugging off the unhelpful comments. I’ve come to realize that most people mean well and simply don’t know what to say or how to react.

I was recently on the other end of this sort of situation, and I realized how difficult it can be to react appropriately in the moment to a diagnosis of Parkinson’s or another serious disease. After I’d learned about a man who’d been diagnosed in his early 20s with a different neurodegenerative disease, I was completely unprepared to respond, and I felt like I’d said all the wrong things.

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When I replayed the conversation in my mind, I was distraught that I might not have been as supportive or empathetic as possible. Despite all of these years of hearing so many responses to our situation, here I was, questioning my own reactions.

Unfortunately, we can’t plan for these occasions unless we’re programmed like robots. Every situation is unique, and there’s no standard tagline or perfectly crafted response.

What can work

So what is the best way to respond to situations like these? It’s not always easy to come up with the right words to say in the moment. How can we plan for such times — or is that possible?

While talking about a medical condition, illness, or diagnosis can feel uncomfortable and challenging, saying what comes naturally is the best response, even if it’s saying, “I don’t know what to say or how to respond.” It’s OK not to know what to say, and the person will likely be relieved that you’ve been honest.

Responding with an offer of support is almost always welcomed and appreciated. Helping with such tasks as picking up medication, shopping for groceries, preparing meals, and driving to a doctor’s appointment is a fantastic way to be supportive. Those simple offers might be enough to make the person feel less overwhelmed, knowing that you’re a backup.

If you have questions, go ahead and ask! I’m always open to discussing and providing answers to common questions or misconceptions. Responding with such concerns shows that you care enough to take the time to learn more.

Strangely enough, sometimes the best response is actually no response at all. Yes, I said “no response.” Among all of the response ideas and suggestions above, listening is often the most compassionate. An ear to listen or a shoulder to cry on might be enough to turn someone’s tough day into a better one.

Now that I’ve experienced the other side of diagnosis reactions, I have a better understanding of how awkward it can feel to be tongue-tied when on the spot. I’m glad I had this experience to better understand how others feel and why they may respond a certain way. I plan to better prepare to ensure that my own responses include grace, patience, and kindness.

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.