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sunkacola

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One thing I find very difficult is the criticism that I receive from others when I do not participate in things that they think I should. Frankly, I don't care what they think of me, but being criticized is still stressful, and for me (I guess for all of us) stress triggers much worse symptoms.

I find that I have to stay away from a lot of things in order to keep my stress level as low as possible. That means, especially these days, not even listening to, let alone taking part in, political conversations. People around me think I am apathetic, and that's not true, but I am not about to tell them that I have fibromyalgia and simply do not have the energy to participate. I hate like hell to admit to weakness of any kind. It is just not my way.

Lately it seems as though the less time I spend around other human beings the better I feel because nothing stresses me out at home. But of course that results in isolation, which is not always a good thing either.

The fact is that the American society places value only on being successful, productive, and competent. If you falter in being any of those things, you have no value as a person. It is everywhere you look. Books, the media, even pop culture language. It is disguised as being "positive": "Be the best you can be!" and all that happy BS. But if the best you can be is less than the standard that has been built, you are a failure. Or if you really have no interest in being the "best" at anything you are a failure.

Not everyone can be "the best". Not every one even wants to be. What, I ask, is wrong with that? I wish that people could simply be valued for who they are and whether or not they treat other beings with kindness.
 

diamond

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I think you are sooo right and it is the same in the UK....being unwell has stigma attached let alone an invisible illness like fibro.

Your last sentence about being valued for who they are and treating others with kindness i echo completely and is probably why we are the ones who are susceptible to fibromyalgia in the first place...generally it hits kind sensitive types not the i couldnt care less types of people.

I too have to avoid stress..like you say it's common....but life, family demands finances can all cause unwanted stress depending on individuals situation.

I agree we generally fare much better if we can at least minimize stress in all ways possible...for me i believe it was a long series of stressful events that caused fibro in the first place and my tolerance for further stress on top of living in pain is much reduced.

Other people now tend to view me as not coping well with life becuase i cant meet their demands and expectations...they dont get that we are all ready overloaded much of the time trying to cope with severepain, weakness fatigue and a whole myriad of other symptoms that often join the party as the years go by and that we are either managing pain, trying to recover from over doing it, or just plain worn out before we start worrying about extras they want from us to make their lives more fun.

On top we want to be fun and able to care for the people we love but often our bodies wont let us which is stressful and we end up feeling guilty too without any one else pointing it out!

Criticism hurts me much more these days..I am far less resiliant than in my pre fibro life.

Thanks for a good post....I wish you lower pain days...take care of yourself.
 
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1sweed

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I find it too here where many think okay she's out doing something thus she could do more if she truly wanted too. I recently had to explain to my boss at work how hard it was for me to carry the sweeper upstairs and how I could not handle the big mops and buckets. Also I begged off from helping at parties where there is lots of noise and confusion.
She was not pleased that I was not willing to do these things in fact she labeled me as different, not like everyone else. I think I will get a tee shirt made that says: DIFFERENT IS GOOD! LOL
 

brandib819

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I agree totally. I actually find myself being more vocal about things and less passive. I have been in many relationships with men and even people in my family in which I have been labeled flat out "inferior" or made to be "subservient" and I have been so beaten down and tired it's almost like I have battered women's syndrome and have snapped (coming out of an emotionally abusive relationship where I was mistreated for my fibro and bipolar I just might). I'm not respected for my opinions, my successes (like managing to graduate from college at age 20/21 with fibro and bipolar) working the short while I did coming straight out of college, all because I have an illness I'm not as good or worthy or valid as anyone else in the family that has done the same things and beyond because I had to stop. So now when people tell me shut up or stop or I'm wrong or to hush or I have no place or need to sit down I snap back and say "Why? You think I can't do it just because I have to do it another way? Or I haven't learned? Or my college education means nothing? I'm not educated? I'm everything as good as you and I deserved to be respected. I treat people with goodness and kindness and I expect the same in return." It might be in vain and it might be fighting a losing a battle, but I refuse to take things lying down anymore. You can only kick a dog so many times before it bites back. And it's hard to avoid your own family, as much as I try.
 

sunkacola

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Thanks for the replies. I have enjoyed reading others' thoughts on this.

I have been lurking on another fibromyalgia forum, but have not joined, and one of the moderators recently posted something that is right along the lines of what I am talking about. It is this long post all full of "Just smile!" and "think happy thoughts!" and "Have a positive attitude!!!" and all that baloney. It just about made me sick and I seriously doubt I will want to join that forum.

I know that the writer meant well. She is trying to help and to encourage. I give her credit for meaning well. But as the saying goes: "the road to hell is paved with good intentions", and to me her post is just more of the same happy BS: if you canNOT smile, if you have tried, and you are not able to go around "being happy", if you canNOT manage a "positive attitude".....then, guess what....you are a failure. Not everyone can manage to "think happy thoughts", and the people who advocate for that are making a huge and tragic error: a failure to recognize that just because they find "being positive" easy, not everyone does. People who suffer from depression, for instance, truly are not able just simply to change things by "thinking happy thoughts". Good grief, does the writer of this post not realize that if it were that simple, no one would be depressed or unhappy in the world? I think this is just another form of essentially blaming the victim.....saying that you have the power to change things is the same as saying it is your fault if things do not change.
 

Lou38

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Thanks for the replies. I have enjoyed reading others' thoughts on this.

I have been lurking on another fibromyalgia forum, but have not joined, and one of the moderators recently posted something that is right along the lines of what I am talking about. It is this long post all full of "Just smile!" and "think happy thoughts!" and "Have a positive attitude!!!" and all that baloney. It just about made me sick and I seriously doubt I will want to join that forum.

I know that the writer meant well. She is trying to help and to encourage. I give her credit for meaning well. But as the saying goes: "the road to hell is paved with good intentions", and to me her post is just more of the same happy BS: if you canNOT smile, if you have tried, and you are not able to go around "being happy", if you canNOT manage a "positive attitude".....then, guess what....you are a failure. Not everyone can manage to "think happy thoughts", and the people who advocate for that are making a huge and tragic error: a failure to recognize that just because they find "being positive" easy, not everyone does. People who suffer from depression, for instance, truly are not able just simply to change things by "thinking happy thoughts". Good grief, does the writer of this post not realize that if it were that simple, no one would be depressed or unhappy in the world? I think this is just another form of essentially blaming the victim.....saying that you have the power to change things is the same as saying it is your fault if things do not change.
I think the hardest thing with any illness where you are constantly in pain is people's lack of understanding. No-one can understand how difficult it is without experiencing it first hand and you begin to feel more and more like a hypochondriac as there seems to be a new pain or a new symptom each day. Unfortunately people never understand anything that is unknown to them and it also seems like fibro is grossly underestimated and understood. This forum is great for speaking to others who can relate to what you're going through ��
 

TipBill

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I agree with everything said here. One thing I am struggling with is people comparing me to my sister in law. I agree, she is in far worse shape than I am but everyone tends to brush my problems under the rug saying "At least you're not as bad off as L----". For privacy issues I don't want to post her name. She has had a very rough year. She had several minor heart attacks, she had diabetes, she spent most of the month of December in the hospital and had to have 4 toes amputated. Like I said she has had a much worse time the past year then I have had but I am still in constant pain, I have chronic fatigue, I am severely depressed, I take massive amounts of medications which I hate but find that they are necessary. And God forbid if I should ever complain I will hear it. "You should be happy you don't have L-----'s problems." I am happy but I have problems of my own but since no one can see them they think I am complaining, ungrateful or just out and out lying.
 

brandib819

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I've gotten that before as well TipBill. Several members of my family have had/have cancer. My uncle, my mom, my grandmother, cousin, great aunt, great uncle, grandfather. Most have survived, three haven't. Whenever I complain, especially on a really bad day and I'm really suffering I get "Oh well, it's not as bad as bad as so and so, at least it's not cancer." I get cancer is horrible and everything, and I wouldn't wish it on anyone, but pain is pain. Mine is still valid. I don't believe it's fair to dismiss mine like it's not there or real just because it's not known about or talked about or even considered a "real" disease by most doctors.
 

sunkacola

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I do not understand why people say things like "at least you are not as bad off as....." In what way do they think that is helpful?? In my experience it never is, and anyone who has suffered with a health crisis, depression, or other debilitating things knows that you cannot possibly compare one to another, not even if you are comparing people with the same diagnosis. People who have good luck and good health and energy and happiness think that it is easy to have those things, but do not realize how incredibly fortunate they are. Recently I heard a woman who is healthy and rich complain bitterly because her husband did not get her a christmas present. I wanted to slap her silly. She had no gratitude for her good fortune in being healthy and rich and safe and in comfort, with a good companion whom she loved by her side. She doesn't deserve what she has.

No one should ever tell another person what they "ought" to be able to do, nor tell them to compare themselves with another and then feel better because of the comparison. If someone speaks to you like that, you have my permission to tell them to go get stuffed.

On the other hand, I do at times compare myself. I remind myself how amazingly lucky I am to have a house to live in. I have a roof over my head and a door I can lock and I am comfortable. I can even turn on a heater if it gets cold. I have enough to eat and drink every day. I can pay my bills and even feed some beautiful companion animals good food so that they will be healthy and happy. The truth is that having all of that puts me, and everyone else who has that much, in the top five percent of most wealthy people on the whole planet. There are millions of people who will never even have, in their lifetime, a glass of cold clean water to drink. I remember that every day and am grateful for all that I have. It doesn't make my pain go away. It doesn't give me energy when I have none. It doesn't keep me from being depressed most of the time. But it does remind me to be grateful for what I do have that is good. There's a big difference, though, between my doing that for myself, which I think would be good for everyone to do, and someone else saying to you "At least you don't have ____'s problems", which is pointless and cruel.
 

brandib819

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I think people's problem's relative. It's all by perspective and each persons problems are relative to them and their situation. What's a major problem and trauma might not be as major of a problem or situation compared to another persons issue. So with that said, it's impossible to compare situations if everyone's perception is different. So why try? You can't. Especially from the outside. That's why whenever someone complains I listen and just say "I don't understand, I can't possibly, but I empathize because I am going through my own pains or something similar." and leave it at that.
 

sunkacola

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Good call, brandi819. What you say is so true.
 

vickythecat

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Earth
It is hard as it is to accept our new limitations, then society comes and brings us down even further.

Don't they think we want to work, contribute to society, be social, do sports, go travel, go on adventures, cook, clean, shop aka have a life???
 

brandib819

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Messages
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The thing is, I'm learning I/we can do some of. those things. I can be social by having people over to my house or even going over to someone else's house to sit for awhile and chat. And travel I can even do if I fly and use a wheel chair to get from terminal to terminal, and then time the lay overs so there's about a tweety to thirty. minute wait between maybe hour to hour and a half long flights. Adventures are whatever you make them out to be whether it's discovering something new in your own backyard.Cooking can even be made simple. Daddy's girlfriend was telling me about this crock pot she saw at a pampered chef party where all you have to do is put all the ingredients inside, put it in the microwave for fifteen minutes and the entire meal is cooked. The lady did fajitas in it and she said the meat was so tender. That would be awesome for me as I can never cook real meals. Shopping, online, or even browsing in a store for ten or fifteen minute spells with quick breaks. Or no shame in using a wheel chair. I've done it at 28. Even on my 21st birthday. It's hard trying to find ways to live within our limitations, but this year I said I was going to finally try to find a way to try to accept it and come to terms with it after almost ten years. They may criticize us, and come down us, and talk about us, but in our hearts we know we are doing the best we can. As someone recently told me, sometimes we have to be like teflon and let what they say if it does not directly damage our hearts slide right off. Because we know the truth. We are doing something. We are doing those things. Maybe not the way they are, but we are doing them none the less.
 
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