Fibromyalgia has changed me in many different ways, most of the time i don’t feel like my own age and according to some people i don’t look my age either but its surprising what a fake smile and some make up can do, it can make you look like a normal, happy and healthy person, but that is not how i feel at all, i feel weak and tired and no energy and in alot of pain with no cure and very little treatment that hardly never works and unable to get on with everyday life like others, i feel lost and isolated and i just feel like i am existing but not truly living in this world.
Fibromyalgia is a miss understood disease and major issue almost everyone faces here is lack of understanding and support. If you are living with fibro or other chronic illness you heard such harmless comments which actually shattered heart into million pieces and push your spirits down.
Here is what community share with us:
1. You’re Always Sick
- > You’re ALWAYS sick! Just get up and start moving around..you’re bound to start feeling better! – Patricia D
- > You always have a headache – Sussie
- > Is there anywhere you DON’T hurt ?! – Cecilia
2. You are Not trying hard
- > I know exactly how you feel but I have actually have a job “ -Branda
- > Stop using it as an excuse, you need to push yourself, the more you exercise the easier it gets. -Starvoula
- > You just need to exercise more. – Candice
- > People suggest I should move more, go to other places to inquire about my MS etc.- Clarisse
3. Lose some weight
- > My husband tells me if you would lose that weight you put on you wouldn’t be like that. Your body isn’t use to carrying around all that. He is never sympathetic to my pain. I finally had him to read about fibro the other day. His response, don’t doctors say that’s not real it’s in your head. And I’m crying in pain. – Kristi
- > Comments about my weight gain (which is from medications) and need to exercise from my doctor are depressing. I can’t function normally and don’t even recognize myself anymore. Thank you for pointing out the obvious! – Jenny
- > Essentially being told I don’t have fibromyalgia it’s just my weight (came from a family member) that same family member just recently told me she’ll “save me”. – Rose
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4. Its a Mental Thing
- > It’s a mental thing. Your body doesn’t hurt, it’s just your brain lying to you.- Demetris
- > If you sort out your mental state you won’t be in pain anymore and that was said by my own Dr. – Ginna
- > Have you thought of seeing a mental doctor. – Donna
- > It’s in your head… – Genevieve
- > Was told by a mental health professional that I was a hypochondriac for worrying about my health and if I’d be able to participate in summer activities- Rose
5. Doesn’t everyone feel tired?
- > “I hurt too. Suck it up” -my 59yr old father. I’m 24 – Pikasue
- > People have more condition than you and they get up n Go to Work, So the sooner you can deal with whatever is your problem n feel better,My rheumatologist said that. – Vanessa
- > We all have aches and pains cause we are old!- Julia
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6. Do Exercise
- > I have RA, Sjogren’s, and Fibro. People suggest that I get out and walk like I use to…2 miles per day, six days per week for twenty-two years I walked. I need new knees and a back surgery because of RA…so I cannot just start walking again. – Gayland
- > Exercise more, get on normal sleep routine – Melissa
7. “You’re so young! “
- > “You’re so young! You’ll grow out of it” no, Susan. I won’t grow out of it. But thanks. – Bobbi
- > You’re to young to be in this much pain – from many doctors -Stephaine
- > You are always in pain, you are way too young to be complaining about old people pains. Why don’t you give up work if its bothering you so much. – Charlette
8. It’s not that bad
- > It’s not that bad you should try having to work so many hours a day. I just tell them I wish I could but the whole reason I lost my last job in the first three days was because I couldn’t stay on m feet for three hours without the pain being so bad that I could barely walk to take a break when it was time.
- > “You aren’t the only one in pain. I’m on disability. Remember?” – My Mom – kristyn
- > Everybody has pain, we all get up and deal with it. You’re being lazy” – Harry
- > Everybody gets aches and pains” – Beverly
- > Get over it I have pains all the time and I still go to work u need to be stronger and put the pain at the back of your mind! -Jenny
9. You’re Lying.
- > “You say you’re crippled but I just saw you walk so you’re lying.” – Harry
- > “These people are human garbage, trying to steal money from people actually working.” – Gerard
- > I told my sister that a job interview went poorly because of my fibromyalgia fog. She told me she didn’t believe “that’s a thing” – Daniele
10. “At least it’s not cancer”
- > At least it’s not cancer” – Mickie, Misty and Tiffany . (Also Read Fibro: A cancer Connector)
- > When people compare to another illness…basically if you aren’t dying, that dismisses the fact that a chronic syndrome with no cure doesn’t affect your entire life. The other day I had someone tell me that my fibromyalgia proved that vaccines are bad omg I just can’t. I told this woman she needed to educate her ignorant self. – Noelle
- > Its not worst then cancer, I got that from my ex wife! -David
- > “Isn’t that just autism? – Louise
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11. Who told you?
- > My last doctors appointment, my doc said to me who was it told you you had fibromyalgia ? … well he might as well stabbed me in my heart ??? Some docs just don’t think before they open their mouths …. this really set me back- Roberta
- > I’ve been treated like I was crazy. Some of them don’t think Fibro is real. I’ve had that one several times. Hope they never have a pain condition right smh- Leigh
12. Eye Roll -Making us feel Guilty
- My 6 year old daughter told me she told her friend she can’t play because she has to take care of her sick mom. -Ashley
- My 12 year old daughter asking if we could go somewhere and first thing out of her mouth is DONT WORRY MOM THERE ARE LOTS OF PLACES TO SIT…- Ashley
- I wish you were better so we could do more things”….. I feel guilty for being ill. – Tammi
- “You just have to be more happy” – Oneida
- It’s not anything said but if I mention anything about it I get lots of eye rolls and sighs like “here we go again” – Andie
- Get your pain under control somehow It’s not just you it’s hurting” my brother after I’d missed yet another family get together-insert eye roll- Kimberly
- The worst was ex told me I was just a burden to him. He didn’t wanna ever have to care for me. When I’ve spent years caring for him taking him to doctors being there for surgeries and to know what hes suppose to do. But that took the cake. I was a burden to him. – Mellisa
- Don’t they make a pill for that? – Sherrie.
I think these comments pretty much follow anyone with a ‘hidden’ disease and some that don’t have hidden diseases too. Let us know in comments if you heard any of these or something else… Do share with your friends and family to let them know they are hurting us..
