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Old 09-29-2008, 08:21 PM   #1
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Peoples comments can cut to the quick

Hi I just really need to vent tonight. I have what I thought was a close friend who I have shared with for over 4 years She has even accompanied me to docs and tests. My Hubby is currently having a bad bout with his bladder and has to go for testing , she is also close to him( we are in a small church group together) She graciously called to see how Hubby was doing , and proceeded to comment"Now that you have his stuff to focus on, maybe you won't be in any pain" "You know if you occupy your mind with something beside yourself it might work" I was livid. I spent most of the night in tears. I know that the people here understand totally what I am feeling. My Hubby is very considerate of me and my FM. I have been on SS disability for over 15 years cause of my Fm and I am sure they did not give it to me just for the chitz and giggles. I feel so betrayed , This is someone I openly shared every aspect of myself with. I guess in her mind my fibro isn't real. Thank you for letting me ramble and maye tomorrow when I calm down I will call her. But tonight I just might do or say something very ugly . Pain free hugs
Miz

 
Old 09-29-2008, 10:26 PM   #2
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Re: Peoples comments can cut to the quick

Quote:
Originally Posted by MizSpentyouth2 View Post
Hi I just really need to vent tonight. I have what I thought was a close friend who I have shared with for over 4 years She has even accompanied me to docs and tests. My Hubby is currently having a bad bout with his bladder and has to go for testing , she is also close to him( we are in a small church group together) She graciously called to see how Hubby was doing , and proceeded to comment"Now that you have his stuff to focus on, maybe you won't be in any pain" "You know if you occupy your mind with something beside yourself it might work" I was livid. I spent most of the night in tears. I know that the people here understand totally what I am feeling. My Hubby is very considerate of me and my FM. I have been on SS disability for over 15 years cause of my Fm and I am sure they did not give it to me just for the chitz and giggles. I feel so betrayed , This is someone I openly shared every aspect of myself with. I guess in her mind my fibro isn't real. Thank you for letting me ramble and maye tomorrow when I calm down I will call her. But tonight I just might do or say something very ugly . Pain free hugs
Miz
Sorry you had to go through that. I had a similar situation recently where someone said, "Well, maybe if just did SOME exercise you'd feel better". Or, how about, this one: I am very disturbed by the fibro fog, I am not used to forgetting anything! I was relaying that to a friend, and she said, :Aw, that just comes with age, we all deal with that".

They just don't understand do they.?

 
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Old 09-30-2008, 05:18 AM   #3
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Re: Peoples comments can cut to the quick

So sorry you had to deal with this. The comments day in and day out can wear on you I know. I have people that call and say how are you? If I say in pain they never say anything, just go on with there problems or whatever the issue of the day is. It hurts but I dont think some will ever get it. I keep telling myself I am worth more, I am not worth less because of this medical problem. I dont think others realize that all that brings them happiness, the job they love, financial freedom and many other things could leave them tomorrow. I didnt sign up for this or any of my other health problems. Yes exercise is supposed to help. I try it and then have to lay down forever from pain. I certainly didnt ask for disability at 35. What would be better, losing job after job because I cant function on a normal basis, physically or mentally? I dont think so.
Prayers you can find peace and know that you arent alone.
Shannon

 
Old 09-30-2008, 06:22 AM   #4
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Re: Peoples comments can cut to the quick

I feel bad for you also. And probably when she asks you whats wrong ? She may reply: Oh i didnt mean it like that and she may not have but people dont think before they speak. But who knows what goes on in peoples minds when it comes to fibro !

For the most part when my friends ask i say, im doing ok thanks. I had a friend come up to me and say, Gene (hubby) said you've been sick whats wrong ? I know Gene told her i had fibromyalgia but asked anyway then replied, whatever that is ? Thats ok though and thats the reason why i didnt want to tell our friends, but i had been missing to so many outtings with our friends, my husband asked if it was ok to tell them and i agreed.

For the most part, i was surprized at how well they all took it and responded to me but i try my hardest not to talk about it. I try to stay low key when i do go out because i know they dont really understand, so i guess thats also part of our condition. Hope your feeling better today and perhaps a little more forgiving for the insensitive comment though i know its not easy and i hope your husband gets to doing ok. Come on smile , let it go, it hurts but in the end you have to say who cares what other people think anyway, and i hope they never have to walk in my shoes

 
Old 09-30-2008, 07:08 AM   #5
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Re: Peoples comments can cut to the quick

It is annoying. I have a *friend* who keeps telling me that her daughter's boyfriends mother has FM *and she does fine and she works and has no problems.* I say, well that's great for her, but everyone is different and I haven't gotten any relief from treatment yet. I also have other health issues, but she doesn't care. She claims to be my friend, but she never listens or has any empathy at all. Then she goes on to talk about her bunions or something...

Also, I want to say if your husband is understanding and supportive, be very grateful for that. My husband is not very helpful to me. He doesn't have much empathy and gets frustrated when I say I can't do something. He also harps on me to *get a job.* I know we need the money, but he can see that I can barely walk some days, but he still says this. It hurts me very much. In fact, we are going to marriage counseling over this (and other issues). After 25 years of marriage, you would think he would be more caring.

 
Old 09-30-2008, 11:56 AM   #6
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Re: Peoples comments can cut to the quick

Rita,
I'm sorry to hear about the lack of support around you. It's important for you to be surrounded by people who will listen to you and not minimize your feelings or symptoms because they are REAL!!! You are entitled to cry, rest, not clean the house, not make dinner, not work, be angry about your situation, and anything else you need to do at any given time. Have you sat your husband down to tell him exactly what you NEED? I don't think anyone could ever understand what this feels like so you may not want to bother explaining that, but you can tell both your friend and your husband what you NEED. If your friend can't see beyond her own opinions and bunions, you may want to reevaluate that relationship. As for your husband, 25 years is a long time to have built a foundation of love and understanding. It may be that he is in denial about what is happening to you because he's scared to see you this way. If he ignores it, it might go away. I hope that maybe something I have said will help you in some way. You know that you can always find support and kind words here, from so many of us who do understand. Blessings to you! Lily

 
Old 09-30-2008, 12:40 PM   #7
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Re: Peoples comments can cut to the quick

Thank you so much lily. You are very kind. My husband has always been this way. He was like this with the kids too. I know that he cares, and the way he handles it is to offer to help with things--like he does the dishes, washes floors, does laundry. He will food shop or do errands. This is all very helpful, but what I really need is some comfort, or just for him to sit with me or talk to me. I have told him this repeatedly, but it doesn't change anything. If I had money and somewhere to go, I might consider a separation or divorce because this is getting harder and harder to deal with as I get worse with my disease.

 
Old 09-30-2008, 02:19 PM   #8
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Re: Peoples comments can cut to the quick

Miz, I am sooo sorry. I would like to say, forget about it, but that's dumb to say isn't it? I guess it's up to us to decide what relationship(s) is really valuable, and give that relationship all the love, care and attention we can give it.
For those of you with husband issues, going for counselling is a very good thing - an opportunity to get things out in the open and clarify what the big issues are. As long as both partners are willing to work at it, it is a very good step for the marriage.
IMHO, It is the quiet ones, and the unspoken words that eat away at a marriage.
I hope all of you, Miz, and the others who replied, have an easy, comfortable evening, a great nights sleep, and be full of energy for the new day!
Peace and comfort,
Paddy

 
Old 09-30-2008, 06:14 PM   #9
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MizSpentyouth2 HB User
Re: Peoples comments can cut to the quick

Thank you for letting me vent. I have been a blubbering mess I swear if I hadn't had a hysterectomy I'd swear I was pms I am so emotional. My friend sent an email this morning (that I haven't read till just now at 9pm) say she thinks I may has misunderstood her comments. I am grateful to have this board with so many that can relate to the battle of FM. Thank you for allowing me to vent and not lash out at someone who just doesn't get "it" But I do know she would do anything in her power to help me. I guess I have hit a new era in my fibro battle I have never been so emotional before. Well I hope everyone has peace filled dreams and pain free hugs to all

 
Old 09-30-2008, 07:17 PM   #10
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Re: Peoples comments can cut to the quick

Hi,
I just want to add some support to the above posts. I've had this reaction to the FM, agoraphobia, depression, anxiety, AN, you name it. What I've come to realize is that most people aren't being malicious, they simply do not understand.

I've even come to the point where I wish that everyone would have just a brief tangle with a disability in their lifetimes (not permanent, I wouldn't wish that on anyone).
I have noticed that once one of these "buck up and get over it" people comes down with something, their attitude changes mighty fast.

So see them as just ignorant...and not worth crying over. We here know how it is, you know, and we just have to accept our difference from thje "civilians" and turn to each other for understanding.

I do hope you feel better about this, and try to associate with people who will support you in grace, compassion and respect. I certainly send you mine.

Seaturtle

 
Old 09-30-2008, 11:53 PM   #11
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Re: Peoples comments can cut to the quick

Dear Rita27

I know exactly how you feel. If I didn't have this or if I had the money I'd have been long gone. I have 2 daughters that live in the same area. My family lives 900 miles away. I feel like a prisoner in my own home...... If I'm upstairs in bed, he never even asks if I would like something to eat or drink. He took 2 days off recently for a procedure that I had. He did nothing, but sit on his ---. He is like Dr. Jeckle and Mr. Hyde, depending on who's around. This is abuse and I have a support group with a counselor.

This isn't real unless it's cancer or you have something everyone knows about. People can be very cruel....some don't want to bother to educate themselves on it. And the Lyrica and Cymbalta ads are making it worse. Who really would want to feel like this? You don't get procedures done for no reason. I get the getting older or is it arthritis thing too.

I'm glad you started this thread. Thanks.

AnneBoleyn

 
Old 10-04-2008, 05:22 PM   #12
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Re: Peoples comments can cut to the quick

UGH! I hate when people say that. Or here is my favorite,--I try not to whine too much to my friends or family because I am not normally a crybaby, but one night I was telling a group of friends that I was just having a bad day and I hurt and ache etc...........and one of them came back with "oh you should just be thankful Fibro is all that's wrong with" then she proceeds to tell me about her sons little league team mate who is in the hospital with a brain tumor ( yes very upsetting and thankful I do not have to deal that don't get me wrong) but It's just like people discount what we have as a real hurtful aching disorder. But what bothers me is people have no clue what its like, and do not realize that for those of us with this that do take care of ourselves and try to keep up with the rest of the world --- don't realize that an achey painful day is the best it will be for us. I mean I am 80% better with medications and excersize, don't get me wrong, But I don't have a single day were I am completely pain free or not stiff and achey--and thats what I call a good day.

I think though the one that gets me is, "Be thankful you can even walk".......HUH!!!!!! Do you KNOW how much medication and pain I go through just to be able to walk?

Sorry your friend hurt you like that--Trust me I can relate.


Here is one I just heard today from my best friend, I told her I had to do my laundry today so I could not go over and hang out with her--She turns around and says "Jess, You really need to manage your time better, You can do laundry at night or why didnt you do it yesterday afternoon?" UGH!!!!! I keep telling her my life revolves around how I feel and when I can get things done. NOT her life
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Last edited by jessbcuz10; 10-05-2008 at 10:01 AM. Reason: To add a new one I was told today.

 
Old 10-08-2008, 05:54 PM   #13
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Re: Peoples comments can cut to the quick

Those comments can sure as heck hurt, in one extremely serious way! All of us is in the learn-to-live-with-it camp are in danger of not being taken seriously by docs because we begin to doubt ourselves.

My husband recently went through a round of doctors visits to teach me how to talk to them and to teach me how not to quit. (I've been dealing with a new and severe pain since April.) He won't let me quit going to their offices until I am out of pain. I had no idea how much harm I had let those comments cause. Now I am not relenting. I'm going back over and over. And I'm looking them in the eye with confidence and determination, saying the pain is still there, what's next? In hindsight, I think the docs like me better this way.

 
Old 10-09-2008, 06:40 PM   #14
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Re: Peoples comments can cut to the quick

i am so glad this post was started. i relate to everything that was said - especially when we start doubting ourselves. if i ever have a goodish day - i used to feel guilty and not believe anthing was wrong with me. in fact it was because of repeated comments such as the other posts detailed that even if i had an ok couple of hours i would use it to take myself to task, berate myself and this would just trigger more pain and exhaustion. i have come to the point that i can barely bring myself to explain to people as, when they look at me. i appear 'normal; to them and i hate to sound as though i am 'whingeing;!
close friends, ones that i thouhgt i would have for life and indeed had for many years, are the ones that hurt most. at first they were very interested; and supportive but gradually visits and phone calls became fewer and fewer and finally stopped altogether. it is happening again right now. i made a new friend and i can see if i talk about anything her gaze just 'switches off'. it is also the fact that doctors do not understand which can shake our confidence. one rheumatoid specialist told me there was nothing wrong with me that working out in a gym 'vigorously' several times a week wouldn;t cure, and he was a 'professor'!. i unfortunately complied and have been left more crippled than before. i get tired of apologising for cancelling invites or for not being able to do something and yet i can understand where people are coming from as it is is so difficult to look behind the apparantly 'normal' appearance. i sometimes look at my reflection in the mirror and it does not add up to what i am feeling. more education is needed and hopefully we will see that happen soon. i have learned to trust myself and what i feel and i wish that for all of you as it keeps me moving forward and 'pestering' my doctors who are really doing the best within their experience.
take care all,
jhaz

 
Old 10-09-2008, 07:44 PM   #15
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Re: Peoples comments can cut to the quick

Yep I can also relate to sooo many of the posts from others on here. The "so called " friends who lose interest when you have to cancel yet another outing and their attitudes as a result and family members who claim to "know" what I'm going through yet still make some comment about how I should be feeling or acting. Grrrr.
Tonight was one of those nights when I ended up getting into an arguement with someone about washing ! Now I'm sorry but if I feel able to sort out washing at midnight then I will The comments about it not being "normal" behaviour really hurt though Thought by now that they would understand that most of us on here do stuff as and when we feel able, so what if it's at midnight... at least we're bothering to do stuff for ourselves when we can without having to ask others for help. I often wonder would they be happier if we did the whole "cripple" act for them permanently? Seems to me somedays that the more we try and get on with our lives the more hassle we get for it, as it's on those days that they seem to forget that we do have something wrong.
Feel like I'm banging my head against a wall sometimes.....anyone else?!

 
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