What People with Chronic Pain/Illness Don't Want You to Say

The video is entitled, Stuff Healthy People Say to Sick People, from YouTube.

Isn't it a shame the people who say these things probably will never get a chance to watch this video. Who says you can't encourage people in your social network to view this video? Maybe posting it up on Facebook might be the wake up call that people in your life need to hear so they learn to be more sensitive. Now if only some people in my life owned a computer...

Here is an article on a similar subject that my daughter found for me. What a shame we can't get this in the hands of everyone who is not in chronic pain or have a chronic illness. Please help spread this one around. It is from Psychology Today.

What Those with Chronic Pain or Illness DON’T Want to Hear You Say

Even the well-intentioned often don’t know how to talk to the chronically ill.

Published on June 27, 2012 by Toni Bernhard, J.D. in Turning Straw Into Gold

The purpose of this piece is not to make fun of those whose comments are off the mark; most people have good intentions. I've written it 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.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”


“I wish I could lie in bed and watch TV all day long.”


It may sound like this couldn’t possibly have been a well-intentioned comment, but given the tone of voice in which it was said to me over the phone, I’m certain it was. I believe that the hard-working friend who said it was genuinely thinking, “Lucky you to have so much leisure time.” When she said it, I was still so sensitive about being sick—including being worried that people might think I was a malingerer—that tears came to my eyes. Then I wanted to scream, “You have no idea how it feels to be sick and stuck in bed with no choice but to watch TV!” Instead of screaming, I mumbled something and got off the phone as soon as I could because I could feel the sobs coming—as they  did as soon as I hung up.

 “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: This is not helpful! Oh, and another person said she’d assist me to get my health back—free of charge—by showing me how to do soul retrieval. Sigh.


“The third cousin of my brother-in-law’s sister’s best friend had what you have and said she got better by drinking bottled water.”


Another sigh.

“Have you tried sleeping pills?”

Sleeping pills? Who hasn’t tried sleeping pills? Even healthy people do! Sleeping pills 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.

*****

It would be so nice if the people who would like to be supportive would understand how much just being with you and standing by/with you means.