Feel like no one believes you?
Ever feel like people believe it's all in your head or you're playing it up? I get more comments when I tell people I have fibro like "My sister has that, it's terrible" than I do negative ones but the few comments or underlying attitudes hit me hard. I've heard comments from family, friends, and even health care providers that bite (most of them didn't know I was listening).
I've deceided people need to be educated. No one really knows how you feel until they've lived it themselves. That's why these support groups really help. So we need to help people understand.
My brother-in-law always thought my neice who has fibro was just a whiner. Recently he had the flu and was in the emergency room complaining of pain all over, weakness, and pain even when breathing. His doctor said it was just from the flu. I pointed out that people with fibro feel that way every day of their lives. My sister said he really had a new appreciation for my neice (and me). Whenever someone describes a virus their suffering with, if it is anything like fibro I quietly comment that's what fibro feels like every day.
Our health care providers need to be educated equally as much. They learn from experience. Everything their patients say affects their understanding of your condition and becomes part of the advice they give others (I know because I am a health care provider).
Don't just tell them you have pain and fatigue or I hurt everywhere. Describe it. Here are some ways I've described it:
*Who turned up the gravity and could you ask them to turn it back down
*Fatigue feels different than tiredness. It feels like trying to run in a swimming pool. Every move takes so much effort
*I hurt everywhere, kind of like restless legs all over my body
*I feel like every individual muscle fiber is spasming on it's own and I can't make it stop (like tiny little muscle cramps everywhere)
*My muscles tighten up when they stay in one position for any length of time, then trying to straighten them (stretch them out) the pain is excruciating.
*The pain mounts really fast in the muscles I use to hold myself in one position much faster than the muscles I'm exercising. (if this is true for you, definitely use this one with your Physical Therapist otherwise they don't understand why you hurt there when that's not the muscle you're working on)
If you are anything like me, sometimes it can look like you are faking it. I can be wiped out and achy one minute then look fine the next just to be miserable again moments later. I've discovered, just like people with ADHD, when you are interested in something there is a chemical reaction in the brain that helps you focus. So, when I'm focused I can shut out the pain and fatigue signals for a little while. As soon as I lose my focus it washes back over me again. Unfortunately I can't seem to do that consciously and it is only short lived. But people need to understand that's what's going on, we're not faking it we are shutting it out for short periods.
If you have any comments you use to help people understand you, please share them.