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Thursday, 09 August 2012 13:28

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

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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.

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“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.

See my next piece: "What Those with Chronic Pain or Illness DO Want to Hear You Say."

© 2012 Toni Bernhard

I'm the author of the How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, winner of the 2011 Gold Nautilus Book Award in Self-Help/Psychology. Website: www.howtobesick.com
I appreciate your shares on Facebook, Twitter, etc. You can also click on the envelope icon and email the piece to others. Thanks!

 

Read 46304 times Last modified on Wednesday, 17 June 2015 05:13

9 comments

  • Comment Link Marie ColeFriday, 05 September 2014 21:16 posted by Marie Cole

    I relate so well to the woman "Mikey" in the beginning of this thread. I've been disabled for 14 years and the isolation is eating me alive! Slowly through the years friends a nd even family have thinned to where no one is near b y and I don't have the funds or energy to go visit them. Normally a person would be exposed to other people and build new friendships but that is difficult when you are unable to get out on a regular basis. I tried volunteer work but because I couldn't lock down a she due for the days I would be around to help no one wanted me...I'm volunteering, not working! Anyway my favorites from people are "isn't there a medicine you can take for that now?", "When are you going to get better ?" and all of the eat this, not that, take these vitamins, minerals, herbs, and last but not least "Get out and be more active, you'll feel so much better! " Oh if they only knew! LOL

  • Comment Link david rTuesday, 12 August 2014 19:23 posted by david r

    I just had my third back surgery, im now fused from L2-S1.with bone grafts and cage at S1, L4 plus ten screws and rods from L2-S1. Im five wks out and the pain is still unbearable. Im getting VERY depressed and have been thinking about just throwing in the towel.

  • Comment Link Bryan ClaytonThursday, 01 May 2014 12:58 posted by Bryan Clayton

    The FDA has ordered my doctor to take me off my pain pills, because "I do not have enough pain. When I've been stuck with a tube in my stomach placed on and through nerves. " I ask you is this right? I've been on them for seven long years. My Doctor has fought to keep me on atleast one, and when I go today I'll see what he has to say about what I've dis roved about the tube being through nerves.

  • Comment Link Mike HillWednesday, 30 April 2014 00:01 posted by Mike Hill

    I've had to major back surgeries, The first one was at L4 5 and the second one was at L 5 S 1 Has fusions at both places! Second surgery I died on the operating table my wife said because the Dr.ether took to long and got staff infection that when through my whole body! Bith surgeries failed! Once I had a good job and was making good mmoney but all of a sudden it was taken away! Then got kidney cancer and had to have my right kidney taken out! And I dont know why wirkmans comp is so bad here in Louisiana!! My wife us a teachers aid but don't make very much! This is a hard life! I would trade it fir any job out there as long as I was able to work but I'm not!! Anyway don't want to bother anyone with my problems cause I know everyone on here in in bad shape or they wouldn't be on here talking loke yhey do..But we really need help and Wirkmans Comp doesn't care about anyone! Your just another number to them! And that's Sick!!!

  • Comment Link Lisa M ZelerWednesday, 23 April 2014 07:59 posted by Lisa M Zeler

    I have 3 hernated disks at l4,l5 s1 and pinched nerves going down my legs where i cant stand. I had open heart surgery at 26 to replace a valve and was droped from my back surgeon, its been many years of chronic pain and a bunch of different pain meds to keep me comfortable all since they are unable to operated due to high doses of coumidan. believe me i can go on with my medical problems , but now it just sounds like im feeling sorry for my self.. I had social security income they took away and now say i can work, even though my medical problems have gotten worse. Have to love the american government , they stand by theirs citizens

  • Comment Link Dorothy MarshallWednesday, 26 February 2014 06:38 posted by Dorothy Marshall

    i know i will be back to this page, i have so much going on that it will take a book lol-tomorrow i have to go for a appeal to get reinstated for access a ride, its a transp serv. for pple with disablilites and cant use public transp. I have used it since 2001 i dont know what is going on, I found this page accidentally and i am so glad that i am not alone..I shall return lol. without transp, i will become a prisioner in myown home, cause walking is a full time job. See ya tomorrow, i be on fb a lot its like family cause i have very little fam.
    .

  • Comment Link robert koromThursday, 20 February 2014 23:57 posted by robert korom

    I am 51 been driving a truck for 15 years ,I have 1 degenterated disk 3 herneated, c 4-6 fusion,and numorous pain in middle,and I hear people say well so and so can do it who is usually in there 20s and pulled a muscle. I have been rear ended 6 times in my life and rolled once.hate to hear well So and so can do it.

  • Comment Link LDMWednesday, 19 February 2014 05:10 posted by LDM

    I lost my last job due to migraines, and have been out of work now for over a year. My daily challenge is to train my thinking in order to accept myself, find positives in life, and not lose hope. That is, on the days that I am not too sick to do anything at all.

  • Comment Link James BowerTuesday, 18 February 2014 20:06 posted by James Bower

    I've heard them all. "You look healthy" is the one I hate the most. I am a 33 male and have severe chronic pain and migraines. Can't work or even make it a few hours without wanting to just break down in tears. The government says I don't meet the criteria of being disabled.

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