Fibromyalgia has changed me in many different ways, most of the time I don’t feel like my age and, according to some people, I’m not my age, but it’s amazing what a fake smile and a little make-up can do It can make you look like a normal, happy and healthy person, but that is not how I feel, I feel weak and tired, without energy and with a lot of pain without a cure and very little treatment that almost never works and is unable to do so . I continue with everyday life like everyone else, I feel lost and isolated and I feel as if I exist but I don’t really live in this world.
Fibromyalgia is a disease that is not well understood, and an important problem that almost everyone faces here is the lack of understanding and support. If you are living with fibro or another chronic disease, you heard comments so harmless that they actually broke your heart into millions of pieces and pushed your spirit down.
We asked a question: “Painful comments are not always obvious. What is a “harmless” thing someone has told you about your fibromyalgia? “To our Facebook group” Living with fibromyalgia and chronic diseases “and we ask you to share your feelings and experiences with us related to this question. They have shared their feelings with us and we have compiled a list of their comments below.
Most of us hear that everything is due to your weight, lose weight and it will be fine. People don’t believe in them and say they are lying and making excuses to do the job. It’s all in your head. He never had chemotherapy or radiation, so it could not be considered cancer (for your information, it is). Are you stupid or mental? If you have so many mental illnesses, you must be in a hospital. If you’re so fat, why don’t you go on a diet and exercise? (I have multiple diseases that prevent me from exercising.) Your only 26, how are you so sick? Are you faking it because you want attention? And many more.
At some time or another, you’ve definitely heard this. People do not realize that it is so frustrating for those of us with this ridiculous condition. What I wouldn’t give to wake up just one morning, only one, and not feel pain.
This is what the community shares with us:
1. You are always sick
- > YOU ARE ALWAYS SICK! Just get up and start moving … you are bound 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 striving
- > I know exactly how you feel, but I actually have a job “-Branda
- > Stop using it as an excuse, you should strive, the more exercise you make, the easier it will be. -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 lose the weight you put, it wouldn’t be like that. Your body is not used to carrying all that. He never sympathizes with my pain. I finally had to read about fibro the other day. Your answer, don’t tell the doctors that it’s not real, is in your head. And I’m crying in pain. – Kristi
- > Comments about weight gain (which comes from medications) and the need for exercise by my doctor are depressing. I can’t function normally and I don’t even recognize myself. Thanks for pointing out the obvious! – Jenny
- > Essentially, when they told me that I don’t have fibromyalgia, it’s just my weight (it came from a family member) the same family member recently told me that it will “save me.” – Pink
4. It is a mental thing
- > It’s a mental thing. Your body doesn’t hurt, it’s just your brain lying to you.- Demetris
- > If you solve your mental state, you will no longer feel pain and that’s what my own Dr. said – Ginna
- > Have you thought about seeing a mental doctor? – donna
- > It’s in your head … – Genevieve
- > A mental health professional told me I was a hypochondriac for worrying about my health and if I could participate in summer activities. Rose
5. Don’t everyone feel tired?
- > “It hurts too. Chúpalo ”-my father of 59 years. I’m 24 – Pikasue
- > People have more conditions than you and get up n Go to work, so the sooner you can deal with your problem, n feel better, my rheumatologist said that. – Vanessa
- > We all have aches and pains because we are old – Julia
- > I have RA, Sjogren and Fibro. People suggest that I go out and walk as I used to … 2 miles a day, six days a week for twenty-two years I walked. I need new knees and back surgery due to RA … so I can’t start walking again. – Gayland
- > Exercise more, maintain your normal sleep routine – Melissa
7. “You are so young! “
- > “You are so young! You will grow out of that “no, Susan. I will not grow out of this. But thanks. – Bobbi
- > You are too young to feel so much pain from many doctors -Stephaine
- > It always hurts, you’re too young to complain about the pains of the elderly. Why don’t you quit your job if it bothers you so much? – Charlette
8. it’s not that bad
- > It’s not so bad that you should try to work so many hours a day. I’m just telling you that I wish I could do it, but the main 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 strong that I could hardly walk to take a break. . when was the time
- > “You are not the only one in pain. I am in disability. Remember? “- My mom – Kristyn
- > We all have pain, we all get up and deal with it. You’re being lazy “- Harry
- > We all have aches and pains “- Beverly
- > Get over it. I have pains all the time and I’m still working. You need to be stronger and put the pain in the back of your mind! -Jenny
9. You are lying.
- > “You say you’re crippled but I saw you walking, so you’re lying.” – Harry
- > “These people are human waste, trying to steal money from people who really work.” – Gerard
- > I told my sister that a job interview went wrong due to my fibromyalgia fog. She told me she didn’t believe “that’s one thing” – Daniele
10. “At least it is not cancer”
- > At least it’s not cancer “- Mickie, Misty and Tiffany.
- > When people are compared to another disease … basically, if you are not dying, that rules out the fact that a chronic syndrome without a cure does not affect your entire life. The other day, someone told me that my fibromyalgia showed that vaccines are bad, but I can’t. I told this woman that she needed to educate her ignorant self. – Noelle
- > It’s not worse than cancer, I got it from my ex-wife! -David
- > “Isn’t that just autism? – Louise
11. Who told you?
- > On my last appointment with the doctor, my doctor told me who told him I had fibromyalgia? … Well, could he also stab me in my heart? Some doctors just don’t think before they open their mouths … this really pushed me back- Roberta
- > They treated me like I was crazy. Some of them do not believe that fibro is real. I have had it several times. I hope you never have a right pain condition smh- Leigh
12. Eye Roll – Making us feel guilty
- My 6-year-old daughter told me that she told her friend that she can’t play because she has to take care of her sick mother. -Ashley
- My 12-year-old daughter asks me if we could go somewhere and the first thing that comes out of her mouth is DO NOT WORRY MOM THERE ARE MANY PLACES TO SIT …
- 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, I get many turns of eyes and sighs like “here we go again”, Andie.
- Control your pain in some way. Not only is he hurting you, “my brother, after he missed another family, joined, put the scroll in his eye- Kimberly
- The worst part was that ex told me it was just a burden for him. He never wanted to take care of me. When I’ve been taking care of him for years, he takes him to the doctors who are there for surgeries and to know what he is 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 anyone with a ‘hidden’ disease quite well and some who don’t have hidden diseases too. Let us know in the comments if you heard any of this or something else … Share with your friends and family to inform them that they are hurting us.