Turning Straw Into Gold

Life through a Buddhist lens

What Those With Chronic Pain or Illness DO Want to Hear

Here’s what the chronically ill wish you’d say to them.

As a follow-up to last week’s piece, "What Those with Chronic Pain or Illness DON’T Want to Hear," I thought it might be helpful to let others know what we wish they would say to us.

“You look so good, but how are you really feeling?”

It’s hard for us to respond to comments like, “You look so good” (or the always dreaded, “But you don’t look sick”) because we know that you’re just trying to be nice. If we respond truthfully with, “Thanks, but I feel awful,” you might be embarrassed or think we’re being ungrateful. It would be such a relief to be asked a question that goes to the heart of the matter: “How are you really feeling?”

“I’m going to the hardware store. Do you need me to get anything for you there?

This is a helpful question. Compare it to the open-ended offer “Call me if there’s anything I can do” that I mentioned in the piece on what we don't want to hear. As I said there, we’re unlikely to respond to such an open-ended offer, meaning we won’t call and say, “Can you go to the hardware store and get me some light bulbs?” That feels like an imposition. But if we know you're already planning a trip to the hardware store, that's a different matter!

“It must be hard to be sick and in pain all the time,” or “It must be frustrating to have to limit your activities so much.”

These comments are examples of “active listening,” a child raising technique I learned when my two kids were young. The idea is to let your kids know you’ve really heard their concerns by feeding back to them, in your own words, what they’ve said.

For example, if your daughter is afraid of the dark, instead of trying to talk her out of how she’s feeling by saying, “There’s no reason to be afraid of the dark,” you feed back her feelings to her by saying, “The dark is scary to you.” When you actively listen in this way, children feel heard and validated. This makes it easier for them to overcome a fear because they know you’re taking their concern seriously and that you’re trying to understand it from their point of view. We who are chronically ill want to feel heard and validated—everyone does!

To "active listen," put yourself in another’s shoes and think about how you’d feel if you were in his or her situation. Then feed those feelings back by saying, for example, “You must feel sad that you can't work anymore.” Nothing feels as good as knowing you're trying to understand how we're feeling.

“Do we need to stop visiting so you can rest?”

My body is often telling me to stop visiting, but it's hard for me to excuse myself because I don't want to let you down. But if I know you’re sensitive to my limitations, I'll respond honestly.

“Don’t feel bad if you have to cancel our plans at the last minute. I’ll understand.”

I used to force myself to keep commitments even if I was too sick to leave the house. Invariably, it led to a bad “crash.” I’m much better now about cancelling plans if I have to, but I still feel bad about it unless those plans were made with one of my “it’s okay to cancel” friends. 

“Would you like to hear about this crazy adventure I had yesterday?”

You bet I would! Some friends don’t want to share what they've been doing because they think that talking about their lives will make me feel bad since I’m so limited in what I can do. But hearing about another’s adventure makes me feel connected to the world and adds real-life adventure to what I often just have to get off the TV.

“I hope you’re as well as possible.”

To those of us living day-to-day with health challenges, this comment is so spot-on that many of us just use the initials AWAP when communicating with each other, as in, “I hope you’re AWAP.” Reflecting on this, wouldn’t it be a compassionate comment to make to anyone? Everybody has his or her share of stresses and sorrows—in sickness and in health. And so, my wish for everyone reading this piece is that you’re AWAP.

Is there something you wish friends or family would say to you? Please feel free to share it with others in the comments section.

© 2012 Toni Bernhard www.tonibernhard.com

Thank you for reading my work. My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow.

I'm also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers

Using the envelope icon, you can email this piece to others. To receive an email the next time I post, click here. I'm active on FacebookPinterest, and (to a lesser extent) Twitter.

Toni Bernhard, J.D., is a former law professor at University of California at Davis. She wrote the award-winning How to Be Sick and, recently, How to Wake Up.

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