Other people's requests, demands and expectations can run us ragged, especially when those people don't understand how limited we are because of fibromyalgia or chronic fatigue syndrome. As hard as it is, at some point we need to start saying, "no."
I recently came across this great reader response to my article on pacing:
I have been put on disability because of all the stress from my job. It has only been about a month. It seems that my days "off" are as busy as my work days were. I am hoping that after Christmas I can start truly pacing myself. I know what my body can handle and have learned the signs. But it seems that my most difficult thing is to tell everyone else "no". That's where my pacing gets out of whack. And it's always an emergency that has to be done and you feel like a heel if you say no. (Yes, I am a fixer. I can't help myself. I have to help people.) So that is going to be my New Year's Resolution. Just say, "NO!" -Tammy
I can definitely relate! I, too, am a fixer. Before fibromyalgia, I'd always been the one who jumped into the middle of a messy situation and tried to clean it up. After I got sick and had to leave me job, some people acted like since I was "just home all day" I should be able to do this or that or some other thing. They didn't quite get that quitting a job due to illness is pretty much like having to take a whole bunch of sick days -- it wasn't time "off," it was time to recuperate. Still, I said "yes" a few times, only to have to back out of my commitment later. To me, that's a far worse transgression than just saying "no" in the first place, so I learned to do it.
As my health has improved, I've been able to say a few more "yeses," but I still keep a close watch on how many commitments I make (not that I'm always successful.) People around me have pretty well learned that I'll do what I can but they shouldn't ask for more.
Do you struggle with saying "no"? Do people in your life demand too much of you? Have you been able to overcome your desire to do too much for other people? Leave your comments below!
Learn more or join the conversation!
NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
Photo © David De Lossy/Getty Images
After 10 years, my significant other walked out on me. I don’t know if it was due to my fibromyalgia and all the symptoms; he never would say. I just know I always felt lousy, and would say no to going out a lot of the time, so maybe he just got tired of it. Between working full time and going to school/homework full time, I just couldn’t be the ‘fun’ adventurous me that I used to be.
Lately my symptoms have gotten so bad, and I have had to say no to almost everything, because I have no idea how I will feel on that particular day.
I feel that most of my friends and family understand – to some degree, but unless they deal with this on a daily basis, they can’t possibly grasp the concept. I have sensed frustration from people when I don’t or can’t make plans.
The thought of starting to date again is terrifying, not only for the obvious “dating” reasons, but for the fear of meeting people who can’t handle the CFS/Fibro junk.
Since the breakup, however, I have focused on my self and my health and hope to be able to get back to saying ‘yes’ to having fun again!
It is difficult for people suffering from Fibromyalgia say Yes. This is due to chronic pain caused by the same disease. Findrxonline indicates that twenty percent of employees in the United States suffer from Fibromyalgia and chronic fatigue, we wonder at it is this?
I’ve had fibro for 30 years (diagnosed 10 years ago), and in that time, of course, it’s waxed and waned, ebbed and flowed. Sometimes I’m quite well for long periods, and other times I’m extremely ill for long periods. The rest of the time, I’m well enough but in a yucky kind of way. Over the years, I’ve learned that, while I can’t attend Parent’s Club meetings or teach in Sunday school, I can help in the background from home. So, I’ve enjoyed doing paperwork help, letter-writing help, and, with the advent of the internet, I’ve been able to do a lot of behind-the-scenes help for committees and church with emails and other such things. Even so, I definitely still have to say “no” at times, because even paperwork can be too much sometimes. However, I’m glad to still be useful even though I’m often housebound.
All of these put together could be from Lyme or one of the associated diseases. Where you checked for Lyme with a Western Blot. If not, there may be an answer to the problem. If your doctor won’t do it, find a lyme literate doctor (LLMD). I have never felt better since becoming sick 16 years ago. Muscle pain is gone and I have alot more energy.
“Yucky”–that’s a good word to describe the fibromyalgia feeling even when you are not in excruciating pain. It’s that swollen, bloated, always somewhat aching, always sensitive to stress, foggy flu-like malaise. I don’t know about having long periods of feeling “quite good.”
As for saying “no,” it can be a difficult choice. My problem is that sometimes I know when I say “yes,” I won’t be pleasant to be around, however much I try to conceal my discomfort; so I wonder how others will react. But saying “no” shuts you out. And I am sometimes amazed at how accepting others are.
I’ve noticed that CFS sufferers have endless energy to write about their disease, their suffering, the stigma, and people’s lack of understanding. I wonder if part of the definition of the syndrome includes narcissistic personality, as this seems to be a common thread in all writing about this.
John to even write a statement like that shows that you are narcissistic and very ignorant. You may be the type of person that if you had to experience just a fraction of what people go through with this illness, you would be complaining the loudest. It never ceases to amaze me the type of comments people cowardly write because they are on the Internet. I dare you say that to someone to their face. What you said is so ignorant that it’s almost quite laughable.
John, your comment is.breathtaking in its arrogance and ignorance. Why would you even bother to read this article if you feel like this? Perhaps you like an easy Target to bully, go try it on someone else or better yet, get a life & stop attacking those who are trying to vet through theirs the best way they can Andrea
Wow! I have heard people giving an opinion on fibromyalgia patients – like lazy, and narcisstic. I cannot beleive someone took the time to write the same here.
John : You know, anything which is not suffered by “self” is hypothetical. Unless you have it, you would never understand. Yes, most fibro patients write a lot on the pain BECAUSE some one somewhere would hear them and empathize with their situation. I say EMPATHIZE not pity, alright. Writing, as you dont know much, is a way to express every minutest emotion in you…and thats the whole point. I find writing very theraptic.
I was searching on new alternative meds on fibro (am 37 suffering from fibro, AS and lupus
and am still sane enough to write my thoughts out,huh!). The comment made by John inspires me to start a blog on various pain issues and many more topics which are not understood by the society.
Thanks for the time to read my comment.
Shame on you, John…whoever you are. Walk a block in our shoes and see what you think. Why would you place such a nasty post?
I shall refrain from profanity…
John, for your information (it seems that you don’t have much) we write to exchange information, so we help each other. Just the action of writing is helpful too. If you can’t help or don’t need help, I suggest you to just be quiet.
Dear John,
I have suffered with fibromyalgia and under-active thyroid for over 20 years. It has reduced my life to a minimal existence outside of my immediate family and the struggle to work even two days a week. Without the ability to communicate with people who understand my situation, and to educate myself from their experiences, my life would be very, very bleak.
As much as my family loves me and tries to understand, they often don’t know why I just can’t do things sometimes – most of the time. Some days I can’t sit at a computer, but when I can I find that I am not alone, it is not ‘all in my head’, and there are ways of coping that I can try.
People don’t want to know how you really feel, so you spend a lot of time saying a polite fiction. These sites are where you can state the truth without fear and find people that not only understand but sympathise, and have the generosity of spirit to try and help.
Perhaps you should spend less time on the internet yourself. Why not make a life change and help at a soup kitchen, take up meditation or even knitting – it is good for the soul.
I wish everyone a peaceful and happy Christmas – or whatever your personal beliefs are.
Thank you
I’d have to say that John needs to go somewhere else. If he finds this forum so full of boring self absorbed people maybe he can find one more to his liking.
If you don’t have the disorder or live with someone who does, why are you here? People here try to share information and offer support.
Would you say the same thing about a paraplegic tryig to cope with pain? How about a person with severe arthritis? Are they also narcissists?
Look for a part in a Wizard of Oz remake… I suggest you try for the Tin Man.
John, John, John, you leave me nearly speechless. BUT, I can almost always come up with a word or two. First, you’re all wrong. Second, I hope that someday you will find the compassion for others that we feel for each other. And third, you have my compassion. What a difficult and unhappy life you must have lead in order to have developed such insensitivity to others. I truly wish you peace and happiness and love.
@Adrienne: I wonder how many of us are “fixers” and how much that contributes to our illness? I know it contributes to mine.
@John: You are a troll (person who posts on a message board just to get a response). Go hide under another bridge.
You go, Gina G, with your comment to John.
The constant pain and frequent flares affect my disposition and pleasure. Having 14 grandchildren, 7 w/in walking distant, I often dread interaction & get togethers because of the mental and physical stress. I can barely manage to keep a desent house for my husband and self.
Getting back on topic:
I, too, had to learn to say ‘no’ – it took years but I am lucky in that I have learned to live almost like a hermit (due to this illness) and no longer have people asking things of me. I did recently have to say a very hard ‘no’ when gov’t housing finally offered me a place (low rent – I’m on a pension) that sounded quite nice and was new and in a good area. But I have to rely on public transport, and there was none near enough for me (although it would be considered near enough for a healthy person). It was a huge ‘no’ because I may not get another offer for a very long, long time – years. I try not to be haunted by the necessity to say ‘no’, even though it was definitely the correct response for me. One day at a time…..
I’ve found that we have to learn to be more Self-ish (not selfish) since few people understand our plight of living in a body that is totally wierd compared to the norm. Learning to say ‘no’ is essential to finding some kind of well-being within the chaos inwhich we have to survive.
Not complaining – just making observations and sharing. Take care, everyone. It IS nice to know I’m not alone.