The Spoon Theory

This has got to be the most amazingly accurate and easy to understand explanation of what it’s like to live with illness/disability. A must read!

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Things never to say to someone with Fibromyalgia

Seriously, these are things you should never say to someone who suffers from fibro!

  • “Oh, everybody gets tired! I’m tired and achy too!”
  •  “You’re so lucky, I wish I could stay in bed all day!”
  • “There’s nothing wrong with you, it’s all in your head!”
  • “But you don’t look sick”
  • “You just need to get out of the bed in the morning, and then you’ll forget you have it!”
  • “All you need to do is get out and do some exercise!”

Thanks to Fibrofaery for posting this list, and make sure to go check out Fibrofaery’s Blog!

I have also been on the receiving end of many such well meaning, but ignorant comments. For the most part, I believe that many people are, (or try to be), sympathetic to this condition, but struggle with how to express it. I admit, we fibro sufferers tend to be a sensitive lot. For most of us, it took years of suffering through specialist after specialist telling us that they couldn’t find anything wrong before finally being diagnosed with Fibromyalgia. We’ve had to deal with countless doctors and nurses implying and sometimes, even making accusations that we’re merely drug seekers. If I get a cold or a sinus infection, and I have to go to an urgent care center, 9 times out of 10, the very first thing the doctor says to me is: “We do not prescribe pain medications to patients with Fibromyalgia”. Add these things to the depression, anxiety and other mental issues that come with fibro and you get a group of people who can be very difficult to talk to. It’s hard not take offense when people say such ridiculous things to you ALL the time.
Here are a few of my least favorite things that I’ve heard over the years:

  • “That’s a shame, you’re so young!”
    Fibromyalgia is an unpleasant disease to have no matter what your age. Yes, I was diagnosed at the age of 18, and while I understand what a horrible fate this must seem to people, please try to understand that I am still trying to live my life. I have to do things a bit differently than other people, but my life isn’t over, so please, keep your thoughts on my age to yourself.
  • “If there’s nothing physically wrong, can’t you just ignore the pain?”
    I am fully aware that there is nothing physically wrong with me, but my brain doesn’t. According to my brain and my nervous system, there is some kind of catastrophic damage to whichever body part is hurting at any given time. You can try to override these signals, but in the end, there is no way to reason with your body.
  • “You look great, you must be feeling better!”
    Want to know a secret? Sometimes, if I’m feeling particularly bad, I put extra effort into my appearance to hide the fact that I feel terrible. Now, that being said, please DO NOT turn it around and say “You look great, are you in pain?”. How about you just leave it at “You look great”. That’s all I really want to hear.
  • “Let’s get you out of the house, that’ll perk you right up!”
    Sometimes a change of scenery can help, but most of the time, all it does is give me a new setting to hurt in. I’m not trying to be stubborn or anything, but sometimes, I just need to find a comfy spot to curl up in and wait for the misery to pass. Prodding at me to “go out and do something” is only going to make me grumpy, which in turn makes the pain worse. If I feel that getting out of the house will help, I’ll suggest it myself.

 
Hopefully, this list will at least make people stop and think about what they’re saying, but if not, it at least gives me, (and my fellow fibro sufferers), somewhere to vent :).  If anyone out there has any other things they ‘d like to add to this list, please leave a comment!

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