Has anyone else experiences this?? I know a few people with low levels of Fibro who work full time, aren't even considering disability, take no meds, and say they just "don't let it bother" them. These people are much less understanding and sympathetic to what I am going through. I don't know what to say to them...there seems no way to explain that I am much worse than they are. They're like "sure, I get tired, I work a 10 hour shift, then go home and clean house and cook dinner, etc. etc. and as long as I don't sit down I'm fine!"
Well, I wouldn't be fine if I tried to do what they do. I've seen how hard these people work--like I did before fibro, very physically demanding work. I have also tried to work like that since fibro--I go into fibro fog, forget where and even who I am, get lost on familiar streets. My tongue disconnects from my brain and I will hear myself saying things I don't mean, or won't even realize I am talking. I have even passed out, just collapsed and people with my say I am totally non-responsive for several minutes, tho my eyes are wide open. After 25 years I have learned to feel when these things are coming on, when I am pushing myself too far and usually can stop and prevent the worst symptoms.
But the people with semi-fibro just smile and say "oh, yeah, I have Fibro too." It is soooo frustrating!!
I would love to hear from others who have experienced this. I hope I am not the only one.
I am sorry that this seems to have been your experience. I, personally, have seen many here with lower levels of Fibro be compassionate and sympathetic to their long-suffering and far more severely suffering counterparts. I wonder if it may just be the case that you came across the few that are unsympathetic in general or there is some miscommunication at the root. If you encounter this again, maybe consider asking them to explain where they are coming from and see if it would be beneficial to you to discuss how you feel in turn. I know, too, that often times, when I am not feeling so well, it is difficult to cope and I may be otherwise more sensitive to actions of others as well. Positive communication may go a long way in helping you sort things out.
Thank you for the reply. I have known one of the people for several years, she is really a nice person, but I get the impression she really doesn't understand that there are several levels of fibro. Perhaps I am the only person she has met with fibro worse than hers. Or maybe I am being overly sensitive. I don't know. At least I can come here and find people who understand.
Kimberly, I don’t personally know anyone else that has FMS except my step daughter. She has bad flares like most of us and Is now doing well & able to work. I think what most people don’t quite “get” is that FMS is progressive for most people. You may have a “light” case now but you will most likely find that your FMS will progress & get worse in time. I guess when you encounter someone who can function with fibro but seems to make light of your personal health issues regarding FMS-maybe it is better to just let it go, realizing that in time, they will more than likely find that their fibro worsens to the degree that yours & mine has! This isn’t wishing bad things on other people-it is more like ignoring their comments/actions because they do not truly know any better right now.
HUGS from Deb
i do hear of people with FM who function well, work, clean house,take care of kids, go to school etc. and i really admire them. But i do think such people have a less severe case than others. There are those who can not function on such high levels and can not work and some can not even go outdoors much, If you are managing to work however difficult it is, i also admire you. I do feel sad that you are around some insensitive people and i may even say 'ignorant' as well.
I was diagnosed with a severe case of cfids( chronic fatigue immune dysfunction syndrome) almost 28 years ago. I was bedridden the first ten of those years unable to feed nor wash myself, read, write, talk , walk and the list goes on. My point is this.,. One day a friend came to visit me; My hubby was showing her something on computer.She tells him that she 'has what i have' . Mind you she works part time, drove here from 3 other states etc... He nearly bit her head off! It is frustrating when folks are not understanding and compassionate and it is so hurtful when they say that they have what you have. I have dealt with this from time to time and find that the real friends and people that i talk to are those folks that are compassionate and understanding . And they dont necessarily have to have the same illnesses i do ,nor symptoms nor experience., The just have to believe me and care about me. Those are the folks that mean the most to me. Others i usually try not to tell much of my business. Sometimes that works best.Every situation is different and i think one has to do what works best for oneself. I guess we may at times encounter those folks that say 'yeah i have that too' . You might just tell them in a nice way that you are glad they do not have the severe case that you have. If they seem to be interested with compassion and question you , you can tell them the severity of your case if you wish.,Best of luck and
I think you are right, they don't know any better. I started out bad, then reached a management point during which I functioned pretty well--not well enough to work, but able to do some stuff I used to be able to do. But that has passed for me, and while I hope it doesn't get worse for these people I know, it may well.
Hugs, Kimberly
Deb said:
Kimberly, I don't personally know anyone else that has FMS except my step daughter. She has bad flares like most of us and Is now doing well & able to work. I think what most people don't quite "get" is that FMS is progressive for most people. You may have a "light" case now but you will most likely find that your FMS will progress & get worse in time. I guess when you encounter someone who can function with fibro but seems to make light of your personal health issues regarding FMS-maybe it is better to just let it go, realizing that in time, they will more than likely find that their fibro worsens to the degree that yours & mine has! This isn't wishing bad things on other people-it is more like ignoring their comments/actions because they do not truly know any better right now. HUGS from Deb
Hi suzie, Thank you so much for your reply. So much of what you say seems right on to me. You are right, my real friends are those who believe me and care about me.
Hugs, Kimberly :)
suzie said:
i do hear of people with FM who function well, work, clean house,take care of kids, go to school etc. and i really admire them. But i do think such people have a less severe case than others. There are those who can not function on such high levels and can not work and some can not even go outdoors much, If you are managing to work however difficult it is, i also admire you. I do feel sad that you are around some insensitive people and i may even say 'ignorant' as well.
I was diagnosed with a severe case of cfids( chronic fatigue immune dysfunction syndrome) almost 28 years ago. I was bedridden the first ten of those years unable to feed nor wash myself, read, write, talk , walk and the list goes on. My point is this.,. One day a friend came to visit me; My hubby was showing her something on computer.She tells him that she 'has what i have' . Mind you she works part time, drove here from 3 other states etc... He nearly bit her head off! It is frustrating when folks are not understanding and compassionate and it is so hurtful when they say that they have what you have. I have dealt with this from time to time and find that the real friends and people that i talk to are those folks that are compassionate and understanding . And they dont necessarily have to have the same illnesses i do ,nor symptoms nor experience., The just have to believe me and care about me. Those are the folks that mean the most to me. Others i usually try not to tell much of my business. Sometimes that works best.Every situation is different and i think one has to do what works best for oneself. I guess we may at times encounter those folks that say 'yeah i have that too' . You might just tell them in a nice way that you are glad they do not have the severe case that you have. If they seem to be interested with compassion and question you , you can tell them the severity of your case if you wish.,Best of luck and
Something that no one has mentioned is that many of these supposed “high-functioning fibros” are self-diagnosed. They feel tired at the end of a long day working, running errands, working out, taking care of kids… So they look up fatigue on the internet and say “oh, that must be what I have, fibromyalgia.” I have a neighbor like this.
I think it’s important to master the noncommittal head nod (“oh, you have fibro too”) with an internal eye roll (“but you just finished a marathon”)…then come here and express your frustration with others who really understand!
Great point, and one I hadn't thought of. Thank you so much for bringing it up!!
Hugssss, Kimberly
Starr said:
Something that no one has mentioned is that many of these supposed "high-functioning fibros" are self-diagnosed. They feel tired at the end of a long day working, running errands, working out, taking care of kids... So they look up fatigue on the internet and say "oh, that must be what I have, fibromyalgia." I have a neighbor like this.
I think it's important to master the noncommittal head nod ("oh, you have fibro too") with an internal eye roll ("but you just finished a marathon")...then come here and express your frustration with others who really understand!
To cut a long story short, I have been affected by fibro all my life but used to be quite active. I have worked in very physically demanding jobs and used to cycle, swim and walk long distances - all in the name of health and fitness. However, I would never be judgemental or unsympathetic of others that had or have simalr conditions to mine or other bad health. This is, in part at least, because I know that different people are affected differently by different or the same ailments. In my close and wider family I have seen people with all sorts of medical issues. I have two aunts with MS and they are both very different in how they are affected for example.
Sadly, through work and life in general, I have known people that are unsympathetic and very judgemental. The old "I have (XXXX) but don't let it bother me" (fill in the condition) is all too easily trotted out. As is the "I work (x) hours but I'm fine". Really? I used to work double shifts for weeks on end in a physically exhausting job but I could not do five minutes of that job now even if I was offered a million pounds to do so. My least favourite is when people say "But you used to be so active and such a hard worker. It's difficult to believe there is anything wrong with you at all."
The thing is, there are a lot of aspects in play here! Though it may be hard to accept, some folk feel better about themselve by undermining someone else - even if they are not intentionally trying to do so. It is much easier for some to remark that they have 'the same' health condition as another but they do not let it bother them than it is to accept that the other is affected much worse by the condition with the same name. There may be considerations such as finances or 'social standing' or simple arrogance that seemingly force someone to not admit how bad they are affected or accept that, although they do not feel so bad now, in the future they may be as badly affected as others or worse. Then there is ignorance! Some folk may be ignorant of the facts of the health condition they have and how said condition affects different people differently or can progress from a mild form to a more severe form. Then there is the other type of 'ignorance' - I'm sure we all know people who know the facts but are unaccepting, blithe or just down right rude about others being worse off or affected at all! There are, as mentioned already in the thread, those that may claim to have fibromyalgia or another condition but really they do not and have not been professionally diagnosed. To me they fall into two categories. In the first are folk that genuinely need to go get health / medical advice or assistance. The second type are hardly worth wasting the time or typeface on!
In away I have been lucky when meeting others with fibromyalgia in that they have understood that the condition affects different people in different ways. Those folk are genuinely sympathetic and compassionate about others regardless of how better or worse those others fair - I'm sure not all are like that though.
I sincerely hope that you will not let those that are less than sympathetic get at you too much and send you my kindest regards,
Michael.
PS; Yes! I'm a man with Fibromyalgia - we do exist ;).
Thank you, Michael, for your reply. It is very thought provoking. I had no idea when I asked the question how complex the answer could really be. I am very grateful for your insight.
BTW, I have a nephew with fibro, I know that there are lots of men with our disease (I refuse to call it a "syndrome".)
I would never presume to "charge" you with being unsympathetic--clearly you are a very sympathetic and intelligent man!
Thank you again for sharing
Hugggss, Kimberly :) Michael said:
Hi Kimberly,
Not guilty as charged!
To cut a long story short, I have been affected by fibro all my life but used to be quite active. I have worked in very physically demanding jobs and used to cycle, swim and walk long distances - all in the name of health and fitness. However, I would never be judgemental or unsympathetic of others that had or have simalr conditions to mine or other bad health. This is, in part at least, because I know that different people are affected differently by different or the same ailments. In my close and wider family I have seen people with all sorts of medical issues. I have two aunts with MS and they are both very different in how they are affected for example.
Sadly, through work and life in general, I have known people that are unsympathetic and very judgemental. The old "I have (XXXX) but don't let it bother me" (fill in the condition) is all too easily trotted out. As is the "I work (x) hours but I'm fine". Really? I used to work double shifts for weeks on end in a physically exhausting job but I could not do five minutes of that job now even if I was offered a million pounds to do so. My least favourite is when people say "But you used to be so active and such a hard worker. It's difficult to believe there is anything wrong with you at all."
The thing is, there are a lot of aspects in play here! Though it may be hard to accept, some folk feel better about themselve by undermining someone else - even if they are not intentionally trying to do so. It is much easier for some to remark that they have 'the same' health condition as another but they do not let it bother them than it is to accept that the other is affected much worse by the condition with the same name. There may be considerations such as finances or 'social standing' or simple arrogance that seemingly force someone to not admit how bad they are affected or accept that, although they do not feel so bad now, in the future they may be as badly affected as others or worse. Then there is ignorance! Some folk may be ignorant of the facts of the health condition they have and how said condition affects different people differently or can progress from a mild form to a more severe form. Then there is the other type of 'ignorance' - I'm sure we all know people who know the facts but are unaccepting, blithe or just down right rude about others being worse off or affected at all! There are, as mentioned already in the thread, those that may claim to have fibromyalgia or another condition but really they do not and have not been professionally diagnosed. To me they fall into two categories. In the first are folk that genuinely need to go get health / medical advice or assistance. The second type are hardly worth wasting the time or typeface on!
In away I have been lucky when meeting others with fibromyalgia in that they have understood that the condition affects different people in different ways. Those folk are genuinely sympathetic and compassionate about others regardless of how better or worse those others fair - I'm sure not all are like that though.
I sincerely hope that you will not let those that are less than sympathetic get at you too much and send you my kindest regards,
Michael.
PS; Yes! I'm a man with Fibromyalgia - we do exist ;).
The 'Not guilty as charged' and 'PS; ...' where put in my previous post in a kind of jokular way! I maybe sholud have explained that a little more in writing the post. I can be somewhat sarcastic or dry when talking with people - especially those I know well - but in a fun and never in an offensive way and this sometimes does not translate well when writing!
I hope your nephew does not suffer too badly with his Fibro or experience the "That's a girls / womans condition" brigade too much (if at all).
Although I do 'go on' a bit sometimes, I love to share! This wonderful web forum (LWF) is great for us all to share and I'm sure by sharing we can all help each other. :)
Thank you for the kind words and my kindest regards to you,
Hi Michael, There is nothing wrong in being sarcastic and dry--I love a dry wit. And I am glad you "went on a bit"--what you shared is very thought-provoking and I have read it over several times with great interest!
My nephew is unfortunately in a major fibro flare, not helped by a major bout of depression. I know for myself fibro and depression feed on each other and make things worse and I can see this going on with him. He doesn't seem at all bothered that it is seen as mainly a woman's disease. I'm not sure he has ever thought about it that way. For us it is a family disease--his mother has it too.
This is a wonderful forum and I am very grateful for it. Reading what others share keeps me grounded in a way..at least I know I am not alone!
Thank you again for sharing, I hope to read more of what you have to say.
Hugs, KImberly :)
Michael said:
Hi Kimberley,
The 'Not guilty as charged' and 'PS; ...' where put in my previous post in a kind of jokular way! I maybe sholud have explained that a little more in writing the post. I can be somewhat sarcastic or dry when talking with people - especially those I know well - but in a fun and never in an offensive way and this sometimes does not translate well when writing!
I hope your nephew does not suffer too badly with his Fibro or experience the "That's a girls / womans condition" brigade too much (if at all).
Although I do 'go on' a bit sometimes, I love to share! This wonderful web forum (LWF) is great for us all to share and I'm sure by sharing we can all help each other. :)
Thank you for the kind words and my kindest regards to you,
It makes me boil hearing people say such hurtful things to us. I sometimes say I have a disorder that causes my symptoms.it makes me feel terrible to dance around FM. I often say it is my bone marrow that sauces my health issues. I do have a bone marrow disorder and blood levels have not been good for several years so it is my first defense. It is not treatable even after 3 bone marrow biopsies.
It it so sad we are dancing around others and what they cause us to do.
Hang in there!
Ron
Thanks, Ron. I like the way you put it "dancing around" the issue. It really feels that way sometimes. I sometimes fall back on blaming my mental illness (lifelong aggravated depression) or my arthritis. Sometime that seems to work better with people than mentioning the fibro.
I really appreciate you and everyone else for replying to this discussion. It makes me aware that I am not alone and have good friends who really *do* understand!
Hugs, Kimberly :)
Fearski said:
It makes me boil hearing people say such hurtful things to us. I sometimes say I have a disorder that causes my symptoms.it makes me feel terrible to dance around FM. I often say it is my bone marrow that sauces my health issues. I do have a bone marrow disorder and blood levels have not been good for several years so it is my first defense. It is not treatable even after 3 bone marrow biopsies.
It it so sad we are dancing around others and what they cause us to do. Hang in there! Ron
Kimberly,
You are most welcome.
I have been trying to locate my brothers new girlfriend or wife who lives in Carolinia. We had a family situation and he came home. He and I have never been close and in fact I don’t even have his address. The lady he is with spends most of her day in bed and the little time she is up she is feeding her large collection of birds. I guess she uses that as therapy and he said they turned the extra bedroom into a bird room. I really think she needs this group. He said I don’t know what to say to her and he seemed frustrated with having to deal with her illness.
I talked to my Rhemo. Last week telling her about the group. She said she was not a liberty to share the web address, I told her to suggest to her patients who feel all alone just to do a web search.
I am a listened counselor and have chatted with the one hospital to see if I am allowed to run a support group there. They suggested I start one possibly at a church. They liked the idea but with liability I could not have it at the hospital.
I am so glad you replied to my post and wishing you a wonderful week.
Cheers!
Ron
If you can locate him, give your brother this web address. It will help him understand and maybe she will read it too. Good luck finding them
Hugs,Kimberly
Fearski said:
Kimberly, You are most welcome. I have been trying to locate my brothers new girlfriend or wife who lives in Carolinia. We had a family situation and he came home. He and I have never been close and in fact I don't even have his address. The lady he is with spends most of her day in bed and the little time she is up she is feeding her large collection of birds. I guess she uses that as therapy and he said they turned the extra bedroom into a bird room. I really think she needs this group. He said I don't know what to say to her and he seemed frustrated with having to deal with her illness.
I talked to my Rhemo. Last week telling her about the group. She said she was not a liberty to share the web address, I told her to suggest to her patients who feel all alone just to do a web search.
I am a listened counselor and have chatted with the one hospital to see if I am allowed to run a support group there. They suggested I start one possibly at a church. They liked the idea but with liability I could not have it at the hospital.
I am so glad you replied to my post and wishing you a wonderful week. Cheers! Ron
Kimberly,
My sister said she has an address and she will email it to me it. He was my brother who was a jock and competitive as a child. He was no angel growing up, has three failed marriages and several kids by several different ladies. I put myself through college and had a wonderful career because of all my hard work. He feels I was given my new car, built my new house and travel all over the U.S.
So he pretty much is nice to my face but is 100% jealous and just won’t meet me half way on anything. But feel I am a better person if I can get this group to his lady without causing additional tension between us.
Thanks so much,
Hope you were able to enjoy the day!
Ron
Good luck with them because I think that one day the fibro demon will catch up with them and hit as hard as it can. In my opinion, fibro is progressive. I have a bunch more issues than when I first got fibro. I could work with it for awhile - awkwardly - but it got worse and worse. I don't wish the progressive stuff on anyone but think those who have it and are less sympathetic to you are kidding themselves.
Please know that we do care about you and your suffering. No one deserves this and those who have it deserve sympathy and support, not apathy or even hostility.
Have a good night if you can. Sweet dreams.
Petunia Girl
Maybe the best thing for you to do is come here to neutralize their comments and attitude, as most on here are really suffering, some more than others. But it's not a competition here as to who suffers the most because we all are cursed with it. But having that curse also gives us a gift - the gift of listening to others who suffer and empathize with them.
You are so right--coming on here and talking about it *is* the best thing. Here I know I will find supportive people who understand!
Hugs, Kimberly :)
Maybe the best thing for you to do is come here to neutralize their comments and attitude, as most on here are really suffering, some more than others. But it's not a competition here as to who suffers the most because we all are cursed with it. But having that curse also gives us a gift - the gift of listening to others who suffer and empathize with them.