I've written this piece partly because I hope it will make those of us with health difficulties feel less alone and partly because I hope it will help others understand how to communicate with us better. With that in mind, I hope you'll find it helpful. Each of the following comments has been made to me at least once since I became ill in 2001.
“Give me a call if there’s anything I can do.”
It’s highly improbable that this well-intentioned comment will result in my picking up the phone. You’ve put the ball in my court and I’m unlikely to hit it back, either because I’m too shy, too embarrassed, too proud, too sick—or a combination of the four. I’m not going to call and say, “Can you come over and do my laundry?” But if you call and offer to come over and do it, I’ll gratefully say, “yes”!
“You're so lucky that you can watch TV all day long.”
A friend said this to me several years ago. I wanted to snap back at her that it was not fun at all to have no choice but to watch TV. Instead, I waited until I was alone and had a good cry. In retrospect, I think the comment wasn't actually directed at me, but reflected a wish on her part to not be so busy. In this respect, it was a well-intentioned comment, if way off the mark!
“Disease is a message from your soul, telling you that something is wrong with your True Self.”
This is an excerpt from one of dozens of emails I’ve received from people trying to diagnose and/or cure me. I must admit that I have no idea what that sentence means. Are the soul and the True Self different entities, and the one that is okay is sending a message to the other one saying that something’s wrong with it? Bottom line: These kinds of comments are not helpful!
“My sister-in-law’s best friend had what you have and said she got better by drinking bottled water.”
“Have you tried sleeping pills?”
Even healthy people try sleeping pills! They may be helpful for some people, but they are not a cure for chronic pain or illness. And while we’re on the subject of “Have you tried…” If it’s available by prescription, I’ve tried it. If it’s available as a supplement, I’ve tried it. If it’s available as a Chinese herb, I’ve tried it. If it’s available at all, the odds are very high: I’ve tried it.
“Just don’t think about it.”
This comment left me speechless…but still thinking about “it.”
“Aren’t you worried that you’re getting out of shape from living such a sedentary lifestyle?”
Uh...yes. Thanks for reminding me.
“Have you Googled your symptoms?”
Let me count the ways.
“At least you still have your sense of humor.”
Thanks, but I’d rather be known as humorless but healthy.
Part 2 of this piece can be found here. And see my next piece: "What Those with Chronic Pain or Illness DO Want to Hear."
© 2012 Toni Bernhard. Thank you for reading my work. I'm the author of three books:
How to Live Well with Chronic Pain and Illness: A Mindful Guide (Fall 2015). The theme of this article is expanded on in this book.
Visit www.tonibernhard.com for more information.