Only one feels anger whens someone says," but you look fine to me" or all you need to do is mind over matter/pain..Oh i almost pop when i get those responses as i know its a dig...Had to vent a little,peace out wayne
hi wayne. i understand how you feel and no you are not the only one. it is very exasperating. If those remarks come from my family or friends i have done my best to explain how illness affects me or i may say ' i wish i felt as good as i look'.. Otherwise i have found it is just not that important to me anymore what others think. Maybe it is just a matter of time. I have been severely disabled from CFIDS( CFS for short or ME as in the UK). for 28 years and the only people I keep close to me are ones that support me and have compassion for me. And there is always this wonderful site to get those things and to vent , be cared for and understood. I am glad there is a place for us to be ourselves and never be judged or criticized.I send you all the best for your well being and HUGGGGGGGGGGGGGGGGGS
suzie
Lovett is right, I did read a study that showed that type A personalities were more likely to get fibro, because when our bodies tell us to slow down, we ignore and keep pushing ourselves causing more stress on the body and cycle continues. And I think it is interesting how many caregivers seem to be afflicted with fibro, because not only are these jobs hard on the body but the mind, the spirit and the emotions. So yes, I would tell people that only the strongest most driven, most caring individuals get this. Hehehehehe, I hope you don't mind me chiming in. Have a great day.
Hi Wayne. No, you’re not the only one. What angers me the most is the “I know just how you feel…I ache a little today too” or “It can’t be any worse than when I get a cold/flu and I was fine in a couple days”. I hate the comparison. It’s not even close to being the same but most people just don’t understand. Hope your day is better!
Melyn
No you are certainly not the only one . I hate it as much when they think it and don't say it . And we know they are thinking it and that is why they don't get it , why we hurt and why we can't function . I get this with my husband and his mother .
I usually say "That's because today is a GOOD day"
My exhusband uses the "If you would just Pray EARNESTLY to God, He will cure you, He cured me!". OR "Why don't you just tell yourself that you aren't hurting?, that you feel fine?" It is a good thing he is in CA & I am in IA!!!
Hi Wayne, That is annoying and I find it very frustrating. But we have each other here and that is what keeps me going.
I know it is difficult but try not to let it get you down. It is great to have a place to vent though isn't it?
I have to say though, I do like Lovetts response!
Jackie S
It is true that type A,hard working people tend to get it..Maybe we over use our brains, ;-)
When people tell me mind over matter i usually tell them i did that for 2 years till my body said enough and i wound up in ICU on a vent for 2 weeks. Thank you for thinking i look fine it makes me feel better to no i can still hide my illness so well.
I know it sounds mean but some times enough is enough. I also carry phamphlets on fibro lupus and chronic pain and give them
I hate it that everyone has to deal with it,but it also tells me its a normal human response and to just let it roll off my back...Thats another thing,someone come up up a give the slap on the back right where i hurt the 24/7,it takes my breath away i have gone to my knees before,,,i've told many fellows don't ever do that again,they forget and wack on the back,,,peace out wayne
That is a great idea,i'm gonna do it,thanks P.B
I like the pamphlet idea. Yes, I think I will print some and keep them on hand. Hey how about a business card with a short paragraph and a web address link to fibromyalgia site. Education, Education, Education. Certainly cant hurt. And Wayne vent all you need. This is a safe place for us to do this.
I have a different way of looking at this one... when I am out ...let's say we are at the Mall. I take a seat on a bench and just watch the people walking by. Hundreds of people pass by me. I see the person in a wheel chair and wonder what is wrong that put them in the chair...but I cannot feel their pain. I now ask myself how many of those hundreds of people who walked by me were living with the same pain as myself... well I do not know ...They do not look like they are in pain. They look normal... WE look normal. I have to take that back because some of us have to have assistance to walk or they are in a wheel chair. So for those fibro. folks... they have a visual that normal people see that something is wrong it clicks in their brains.
I cannot take offense to someone saying that I do not look sick. I am thankful that I am not a visual of my condition. Can you even imagine what Fibro would look like if it were visual? Now I say this but have to tell y'all I have never had anyone say that I did not look sick. I am still in the beginning stages of the diagnoses. I have a lot to learn yet. I am glad that I am not a picture of my condition... I am the type that if someone were to tell me that I did not look sick I would say " I Know thank goodness can you imagine what Fibromyalgia would look like if I wore it where you could see it." .
I say this with all my heart felt love and respect for all of us who have fibro... we cannot be offended by people who can't see our pain...we should let them know we are thankful they cannot see it. We do not have to wear it like a badge we deal with it daily. We are what fibro looks like... each one of us looking in the mirror at the face of Fibro. even we cannot see our pain... we feel it. So getting someone else to understand we do not look sick because they are looking for a visual... take them to a mirror and say this is fibro...
Ok I feel like I have rambled on and on... HUGGS!!!!
I feel like the Fibro has made me a more empathetic person. I also look around and wonder what personal challenges the person next to me is facing. I wouldn't necessarily choose to have this condition but I think in some respects it has made me a better person. I know without a doubt I am kinder and more patient (most of the time) with others than I was 15 years ago. Yes it is difficult when people make unkind or judgemental comments but I work hard to not let it effect me as much as it used to. This is MY life and I am going to live it the best I can. Everyone has a challenge (usually more than one) in life and Fibro just happens to be one of my challenges.