Fibromyalgia has changed me in so many different ways, most of the time I don’t feel like my age and according to some people I don’t look my age either, but it’s amazing what a fake smile and a little makeup can do. it can make you look like a normal, happy and healthy person but this is not how I feel at all, I feel weak and tired and without energy and in a lot of pain with no cure and very little treatment that hardly ever works and I can’t keep up with everyday life like everyone else, I feel lost and isolated and I feel like I exist but I don’t really live in this world.
Fibromyalgia is a poorly understood disease and the main problem faced by almost everyone here is a lack of understanding and support. If you live with fibro or another chronic disease, you have heard such harmless comments that it actually broke your heart into a million pieces and pushed your spirit down.
This is what the community shares with us:
1. You are always sick
- > You are ALWAYS sick! Just get up and start moving… you will surely start to feel better! – Patricia D
- > You always have a headache – Sussie
- > Is there a place where you DO NOT hurt? – Cecilia
2. You are not trying
- > I know exactly how you feel but actually I have a job ”-Branda
- > Stop using it as an excuse, you have to push yourself, the more exercise you do, the easier it becomes. -Starvoula
- > You just need to exercise more. – Candice
- > People suggest that I should move more, go to other places to ask about my MS, etc. – Clarisse
3. Lose some weight
- > My husband tells me that if you lost that weight that you gained, you would not be like this. Your body is not used to carrying all that. He never sympathizes with my pain. I finally asked him to read about fibro the other day. His answer, the doctors do not say that this is not real, it is in your head. And I cry in pain. – Kristi
- > My doctor’s comments about my weight gain (which is due to medications) and the need to exercise are depressing. I can’t function normally and I don’t even recognize myself anymore. Thanks for pointing out the obvious! – Jenny
- > Basically, when they told me I don’t have fibromyalgia, it’s just my weight (it came from a family member), that same family member recently told me they will “save” me. – Pink
- 4. It’s a mental thing
- > It’s a mental thing. Your body doesn’t hurt, it’s just your brain lying to you.- Demetris
- > If you fix your mental state, you will feel no more pain and that was said by my own Dr. – Ginna
- > Have you thought about going to a psychiatrist? – Donna
- > It’s in your head … – Genevieve
- > A mental health professional told me I was a hypochondriac because I was concerned about my health and if I could participate in summer activities- Rose
5. Doesn’t everyone feel tired?
- > “I hurt too. Suck it up ”-my 59-year-old father. I’m 24 years old – Pikasue
- > People are in more condition than you and they get up and go to work, so the sooner you can deal with whatever problem it is, the better you’ll feel, my rheumatologist said that. – Vanessa
- > We all have aches and pains because we are old! – Julia
- 6. Exercise
- > I have AR, Sjogren and Fibro. People suggest that I get out and walk like I used to… 2 miles a day, six days a week for twenty-two years that I walked. I need new knees and back surgery due to RA… so I can’t start walking again. – Gayland
- > Exercise more, follow your normal sleep routine – Melissa
7. “You are so young! “
- > “You are so young! You’ll get over it in time. ”No, Susan. I won’t let it grow. But thanks. – Bobbi
- > You are too young to be in so much pain – from many doctors – Stephanie
- > You are always in pain, you are too young to complain about the pains of the elderly. Why don’t you quit work if it bothers you so much? – Charlette
8. It’s not that bad
- > It is not so bad that you should try to have to work so many hours a day. I’m just telling them that I wish I could, but the reason I lost my last job in the first three days was because I couldn’t stand for three hours without the pain being so bad that I could barely walk to take a break. when the time came.
- > “You are not the only one suffering. I am disabled. Remember?” – My mom – kristyn
- > Everyone has pain, we all get up and face it. You’re being lazy “- Harry
- > Everyone has aches and pains ”- Beverly
- > Get over it I’m in pain all the time and I’m still going to work. You need to get stronger and leave the pain in the back of your mind! -Jenny
9. You are 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 who really work.” – Gerard
- > I told my sister that a job interview went wrong because of my fibromyalgia fog. She told me she didn’t believe “that’s one 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 are compared to another disease … basically if you are not dying, that rules out the fact that a chronic syndrome with no cure does not affect your entire life. Someone told me the other day that my fibromyalgia proved vaccines are bad, my gosh I just can’t. I told this woman that she needed to educate her ignorant self. – Noelle
- > Not worse than cancer, I got it from my ex-wife! -David
- > “Isn’t it just autism? – Louise
- 11. Who told you?
- > My last appointment with the doctor, my doctor told me who told you that you had fibromyalgia? … Okay, ?? ??????????????????? Some doctors just don’t think before they open their mouth…. this really set me back- Roberta
- > They have treated me like I was crazy. Some of them don’t believe that Fibro is real. I have had it several times. I hope they never have a pain condition, right, smh? Leigh.
12. Rolling our eyes: making us feel guilty
- My 6-year-old daughter told me that she told her friend that she couldn’t play because she had to take care of her sick mother. -Ashley
- My 12-year-old daughter asks if we can go somewhere and the first thing she says is DON’T WORRY, MOM, THERE ARE MANY PLACES TO SIT… – Ashley
- I wish you were better so we could do more things ”… .. I feel guilty for being sick. – Tammi
- “You just have to be happier” – Oneida
- Nothing is said, but if I mention something about it, they roll their eyes and sigh like “here we go again” – Andie
- Control your pain in some way It’s not just you that hurts, ”my brother after I missed another family reunion. Roll your eyes, Kimberly.
- The worst part was that my ex told me that I was just a burden to him. He never wanted to have to worry about me. When I’ve spent years caring for him, taking him to the doctors, being there for surgeries and to find out what he’s supposed 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 follow just about anyone with a ‘hidden’ disease and some who have no hidden disease as well. Let us know in the comments if you heard any of these or anything else … Share with your friends and family to let them know they are hurting us …