Keeping your condition secret

All your fibromyalgia experiences, questions and answers.

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Re: Keeping your condition secret

Postby carolad » Wed Jul 23, 2014 12:29 pm

Well...I'm thinking I probably didn't phrase it very well! I don't mean I go out of my way to keep it secret...if someone finds out I have fibromyalgia, I really don't mind. But I don't want to talk about it and I don't like admitting to people that I have no life outside of work. I hate people making a fuss and being overly sympathetic so I'd rather keep it to myself when I'm struggling. I have reduced my hours at work recently so that was a really big thing for me, because I did have to admit that I wasn't coping with full time work. But now that everyone is used to my new hours, I don't want to discuss it any more. Most people I work with don't know the extent of my problems (very few know I have been diagnosed with fibro) but that's the way I want to keep it :) It isn't relevant, as far as I'm concerned. I'm there to do a job and no matter what is going on in my personal life, I've always tried to provide a professional service at work.

I've never been one for complaining, I'm of the 'that's the way life is, just get on and deal with it' type, so I suppose that is why I tend to keep my problems to myself. It does mean I have a very low tolerance for people who whinge about minor problems though...you know the type!! :roll:
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Re: Keeping your condition secret

Postby Tally1068 » Wed Jul 23, 2014 1:30 pm

FluppyPuffy wrote:
It has taken me a long time to get to a point where I'm able to speak more openly about how I am when someone asks, and even now there are moments when I do revert to not saying very much, but they are a lot less frequent. What I actually say does depend on who I am with/speaking to, where I am etc and the impression I get from them.



^ ^ ^ This exactly.
I found there were times being open helps, and I was doing myself an injustice as I didn't want to "burden" others. Why not? It's a major part of who I am.
I used to so want to be normal that I'd fight and fight to carry on (this was years ago and was more to do with another condition).It didn't make me feel better, it made me frustrated, angry and helplessly stressed. And we all know how much stress and fibromyalgia love each other.
I also had the example of a father who thought that anyone asking conversationally "How are you?" meant they needed a 40 minute diatribe on all his ailments :roll: ...I can still see the milkman and the postie trying to run for cover. :pull-hair:

.
Once I accepted and adapted, the stresses of life, if not the pain, made things so much easier. I printed a few copies of the PDF file on "My fibromyalgia" to give to my closest friends and if people cant accept I'll let them down, say "No" frequently etc etc then that's their loss. It's amazing how you find out who your true friends are. Living on my own my friends are my Support System.

After 8 months of being bed bound I finally was told no operation would make me able to walk again as my spine was too crumbly and my lungs too bad to make surgery an option. I'm now getting really excited about adapting the house to wheelchair living and generally living upstairs. (Economically it makes sense. A stair lift is so much cheaper than building a bedroom with shower room.)

But one or two think living in your bedroom is the height of giving in! :crazy: I don't care. My motto is whatever makes life easier is the way I go. Your true friends and Carers will understand, and more importantly want to know about your fibro so they can understand. To any others I keep stum. I give a non committal "OK" to anyone else who asks how I am. They're just being polite.

So pick who you tell, but it's therapeutic to share your frustrations with certain people. You don't have to let fibromyalgia define you, you do IMO, need to let your own body tell you not to keep pushing against the horrible consequences of what it does to you.
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Re: Keeping your condition secret

Postby ..:: lisa ::.. » Wed Jul 23, 2014 2:13 pm

My motto is whatever makes life easier is the way I go


I love this, I had a discussion with my mum about using crutches, I have been practically homebound, I get so out of breath and in so much pain from walking about that I just really avoid it. Crutches will help me but my mum said "yes but you dont want to rely on them....."

Well I'll just carry on doing nothing then because that's really helping my self esteem!!!!

Carolad, I think I understand now, sorry I do get confused :oops:

I hate when people ask me if I'm ok or what's wrong, it's either a quick yes I'm ok or I'm fine because I feel if I start reeling off what's wrong I'll just been seen as a hypochondriac or a moaner....
The best line I've heard, from my mum again, was oh aren't you well, you don't look well... :shooting:

Printouts about fibro are a good idea, I might try that myself!
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: Keeping your condition secret

Postby carolad » Wed Jul 23, 2014 2:35 pm

..:: lisa ::.. wrote:
My motto is whatever makes life easier is the way I go


The best line I've heard, from my mum again, was oh aren't you well, you don't look well... :shooting:



Oh yes...or how about 'you look tired'....not what I want to hear (especially if they say it on the days where I feel relatively well!) ;-)
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Re: Keeping your condition secret

Postby catscout » Wed Jul 23, 2014 2:46 pm

When I visit my mum and have forgotten to bring my painkillers, I'll ask her if she has any paracetamol and she asks me "Why have you got a headache?"

And this is my mum, never mind my friend who is a doctor who wonders what I do with my time. If I tell her I sleep a lot she just looks at me and says "Do you not think if you do nothing it makes you even more tired?" Even she doesn't understand the difference between good and bad days. I have another friend who when she sees me in town asks me how the job hunting is going and I have to stand there looking all fine and say that I'm still on the sick.

So that's why I usually say I'm fine thanks, and steer the conversation back to them, it's not being ashamed or not wanting people to know it's just saves time and stops you from feeling bad when they don't understand or look you up and down to make their own decision.
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Re: Keeping your condition secret

Postby Zia2014 » Wed Jul 23, 2014 3:00 pm

That's a great poem. Tbh I wouldn't mind telling people but the issue is, I don't know *what* I am telling people until I have a diagnosis! Most of them seem to have come up with their own explanation seeing as no one at work has been told anything, apart from my own manager. When I went back I told some people I had been in a lot of pain and they were shocked, they had no idea. I'm pretty sure people thought I was exaggerating how bad it was.

charlotteerika wrote:I had someone tell me I did not have Fibro (as diagnosed by my Rheumy) but I had 'Lyme Disease' instead! Or another person thought it was because I was harbouring traumatic emotions from my life when I was younger which I am 'not able to let go off'!


This is weird because I had this yesterday! And from an Occ Health doctor of all people! He suggested that something from 10 years ago was the cause (hmm) or that I was stressed when this first started - which I keep having to tell people is wrong, there was no 'cause' I can think of at all. He also suggested that Fibro was in people's heads and didn't exist... :nono:
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Re: Keeping your condition secret

Postby ..:: lisa ::.. » Wed Jul 23, 2014 3:16 pm

catscout wrote:When I visit my mum and have forgotten to bring my painkillers, I'll ask her if she has any paracetamol and she asks me "Why have you got a headache?"


Oh hahaaaaa that made me LOL literally!!
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: Keeping your condition secret

Postby FluppyPuffy » Wed Jul 23, 2014 3:30 pm

Zia2014 wrote:
charlotteerika wrote:I had someone tell me I did not have Fibro (as diagnosed by my Rheumy) but I had 'Lyme Disease' instead! Or another person thought it was because I was harbouring traumatic emotions from my life when I was younger which I am 'not able to let go off'!


This is weird because I had this yesterday! And from an Occ Health doctor of all people! He suggested that something from 10 years ago was the cause (hmm) or that I was stressed when this first started - which I keep having to tell people is wrong, there was no 'cause' I can think of at all. He also suggested that Fibro was in people's heads and didn't exist... :nono:

The exact cause of FM has still yet to be discovered, and there are a number of ideas/theories bouncing around as to what it could be. One of these ideas is that some sort of trauma could be a potential trigger/contributor to the condition developing. This trauma could be physical, such as an accident causing injury, surgery, or it could be emotional/psychological in origin, such as the after~effects of a serious life event or experience. So it is possible that what you experienced 10 years ago was/is a contributory factor in things developing.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Keeping your condition secret

Postby Zia2014 » Wed Jul 23, 2014 3:34 pm

Yes that could be true Fluppy, but he was suggesting it was CFS not Fibro.

By the way your username confuses me every time I look at it! Is it a deliberate spoonerism?
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Re: Keeping your condition secret

Postby FluppyPuffy » Wed Jul 23, 2014 4:41 pm

There has been a little research which suggested that CFS could have a potential illness cause as, in a few cases, there traces of particular viral residues/markers. Unfortunately I haven't been able to find out if there has been any further developments or follow~ups.

I'm completely confuzzled as to why he would go from saying he didn't believe in FM to talking as if you had CFS :-? :-? :-? Maybe it's because he has seen all those hundreds of patients with it, and because the number has passed a particular one that he has plucked from thin air, it suddenly makes it real and believable, and when he's seen a particular number of patients with FM, the same magic will happen, making it a proper pawleyness in his eyes :shock: :shock: :shock: :crazy: :crazy: :crazy: :crazy: :crazy: :crazy:

My screen name often gets people asking about it :lol: :lol: :lol: :lol: :lol: I suppose it did come about from a spoonerism, but not a deliberate one. After 12 years of "persuasion" OH finally realised that we did need a doglet, and I was so :bear-dancing: :bear-dancing: :bear-dancing: instead of it coming out that we were going to get a fluffy puppy, it was a Fluppy Puffy that I came out with, and it has stuck with me for 6 years so far :lol: :lol: :lol: :lol: :lol:
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Re: Keeping your condition secret

Postby Zia2014 » Wed Jul 23, 2014 5:37 pm

He totally confuzzled me too! He said he doesn't believe in FM at all and that was the same for the hour. He also started by saying he didn't believe in CFS, but 10 minutes later he did, and that's what I have - apparently! :crazy:

Ah I see! I am also angling for a puppy, hopefully one day....! Only problem is we would have to move, and I would have to do more walking. Hmm!
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Re: Keeping your condition secret

Postby dazzleship » Fri Jul 25, 2014 3:16 pm

lovely poem catscout :-)

I know exactly how you all feel. even though people in my office at work know of my illness, they don't really know because I try not to let it show. I keep hidden how sore I'm feeling, try to hide times when I feel confused or when my attention is just wandering and I can't focus on what I'm doing.

I don't know why I do, I guess I just - it's too much trouble to explain sometimes, you know? if I had an illness that people knew of and understood, just telling them what it is would be enough.

like "I've got arthritis" or "I've got a broken leg". not in any way saying I wish I did have these, but I'm sure you all know what I mean.

sometimes it's just easier not to tell the truth about how we're feeling because it's so exhausting to explain to people. it's easier to just say "oh I'm not too bad" if someone asks how I am.

I sometimes wish it wasn't that way though. :cry:
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Re: Keeping your condition secret

Postby catscout » Fri Jul 25, 2014 9:21 pm

Aww thank you Dazzleship about the poem, yes I've found it's just easier to cover it and say your fine, as how can they understand how many different symptoms we have, it's hard enough for us to get our heads round it and we live it. X


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