First person I told I had Fibromyalgia :(

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First person I told I had Fibromyalgia :(

Postby Lemonie » Thu Apr 25, 2013 10:50 pm

I was talking to someone today who asked me how I was as he had heard I had been to the hospital. I told him I had been diagnosed with fibro and he asked what it was. I said it covered a few different conditions and he said "Oh is it one of those made up illnesses they give to hypochondriacs to make them think they have something instead of just calling them hypochondriacs" :cry:

I laughed as was taken aback but I was really hurt by the comments. What do you say when people ask you what fibro is as perhaps I didn't explain well.
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Re: First person I told I had Fibromyalgia :(

Postby susanasilva » Thu Apr 25, 2013 11:17 pm

I'm sorry to know that.
It hurts a lot, I hear that a lot of times and get other comments :( , but, we have to move on.
Don't pay attention to those comments, they hurt and that hurt is not good for you.

You're not alone

We are all with you and to support you whenever you need.
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Re: First person I told I had Fibromyalgia :(

Postby Pipsie » Thu Apr 25, 2013 11:29 pm

Reply "Aren't you a know it all? I guess it's similar to using 'know it all' but what you really mean is ars***le".
Then just walk away.
:-D
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Re: First person I told I had Fibromyalgia :(

Postby bulbie » Thu Apr 25, 2013 11:29 pm

These kinds of comments are born of sheer ignorance. He probably believes anything that can't be seen with the naked eye is made up also. :evil:
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Re: First person I told I had Fibromyalgia :(

Postby no1phil » Thu Apr 25, 2013 11:32 pm

That was a shocking response :( people just don't want to understand.

I usually tell people its arthritis of the muscles - even then i don't know if i am explaining it right - but it seems to help people realise the impact.
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Re: First person I told I had Fibromyalgia :(

Postby purrrcatty » Thu Apr 25, 2013 11:38 pm

I just tell ppl its a condition that affects every muscle in my body and tendons so i have alot of pain all the time. :) a few ppl who i have told they have turned round and said oh ive heard of that its very painful :) x x :crazy:
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Re: First person I told I had Fibromyalgia :(

Postby Spange » Thu Apr 25, 2013 11:55 pm

So insensitive! If anyone else gives the same reaction, just say "My imaginary illness is a lot more real than your medical expertise". That should hopefully shut them up. To the ones who are genuinely interested, I tell them it's a long term chronic illness which causes intense pain and fatigue, along with many other symptoms. Unfortunately, there are always going to be ignorant people, some really close to home, which is hard to deal with but, in the end, you just have to focus on yourself and leave them to it. You will find your way xx
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Re: First person I told I had Fibromyalgia :(

Postby funny_wonder » Fri Apr 26, 2013 3:47 am

How incredibly rude, not to mention insensitive and ignorant. I have reached the point of being quite blunt with people like that. Just remember, his attitude is more of a reflection on him than it is on you. It's hard not to let it get to you but that does get easier with time.
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Re: First person I told I had Fibromyalgia :(

Postby inkyboo » Fri Apr 26, 2013 6:02 am

I know exactly how you feel. I am currently being bullied at work by someone who thinks that i should stop taking my tablets as there's nothing wrong with me and thinks that I'm an attention seeker. It's really hurtful when I'm trying to cope with all the tablets, the pain, the weekly hospital visits and the lack of any real support. I'm now going through an investigation to see what work can do to stop me being bullied.

The only advice I can give is to take the high road and leave them to think what they want because you need your focus to be on you and you survive each day. It's hard to not let people get you down. Just try to spend time with people that are supportive and actually care about you. Xx
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Re: First person I told I had Fibromyalgia :(

Postby whoami » Fri Apr 26, 2013 6:26 am

Lemonie.....people only respond with what they know. If they are ignorant to the facts then we can't expect any other comment but ignorance. We can't condemn them for not knowing.

If someone asks me I tell them the truth, the facts. I don't describe fibromyalgia as anything other than what it is.

If we educate people we are helping others. However, what they do with the information is none of our business. If they care not to believe or understand then that is their problem not ours. Don't take in their inventory .

If you hear a commet that is not true then correct them.
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Re: First person I told I had Fibromyalgia :(

Postby whoami » Fri Apr 26, 2013 6:42 am

[quote="inkyboo"]I know exactly how you feel. I am currently being bullied at work by someone who thinks that i should stop taking my tablets as there's nothing wrong with me and thinks that I'm an attention seeker. It's really hurtful when I'm trying to cope with all the tablets, the pain, the weekly hospital visits and the lack of any real support. I'm now going through an investigation to see what work can do to stop me being bullied.

Inky boo,

I really and truly feel for you. It is hard when we feel the need to justify ourselves over and over again. For years I spent so much energy, so many tears thinking I owed an explanation for something I didn't understand myself.

A Dr of mine gave me the best advice one day as I sat in his office on the verge of a breakdown. His words,......."Do not take in anyone else's inventory, other peoples opinions are none of your business".

It took a while but I finally got it. It was hard not to listen to others, but I learned not to. They were the ignorant ones refusing to hear the truth.

Don't ever feel you have to justify yourself to anyone...you don't. Xxx
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Re: First person I told I had Fibromyalgia :(

Postby SuperCat007 » Fri Apr 26, 2013 7:28 am

I usually tell people where to stick it if they say something like that to me. Then I add 'Oh by the way, the next time you're 'dying' of a hangover after a great night out, think of me. That's how I feel EVERY day, oh and I just have to get up and get on with it because life can't stop for imaginary illnesses.'

Trust me it works every time, they will be taken aback and not get it at first. But once it sinks in you'll either get an apology over text/phone or they'll never talk to you again. Win, win in my books.
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Re: First person I told I had Fibromyalgia :(

Postby Iceskatemum » Fri Apr 26, 2013 9:02 am

Hi Lemonie Sorry you have come across the worst kind of person , when dealing with an illness such as ours. These tend to be the ones who don't know anything about it but don't want to know either .
If I am dealing with sweeping statements I tend to think they also can be the ones who believe all the hype in the media about disability benefits and how we are living the life or luxury due to having a "made up" illness ....the new "bad back". i.e. Many people have it but it is difficult to prove by normal medical tests how badly they are affected . Sorry if I seem a littel bitter but I have recently run across peole of the same ilk and am still a bit worked up about it! :evil:


In answer to your question I guess I have levels of responses for different people.

For the general "How are you?" enquiry that is part & parcel of every day conversation I tend to just reply "muddling on ...getting there". That way they can't come back later and accuse you of hiding something (As someone did ) if you tell them you're OK .

For those who have a bit of an interest but would glaze over if you tried to inform them in detail . I would general just tell them I have Fibromyalgia , it similar to arthritis in that you can have a lot of pain & fatigue....they seem to get that as they can attribute it to something they know/ understand and yet you are still introducing the proper name of your illness should they want to go and find out more.

For folk who might be interested I tell them a little about FM and how it affects me .You can then guage it your self as to how much detail you tell . If you include both the main & less common symptoms they become more intriged than anything else. As they can't believe one syndrome should be able to express itself in so many ways. If you have a few "fibro fog " stories as well to throw into the pot it tends to lighten the mood.


As for the "Oh you're all hypocondriacs " just agree with them and then add something about "yeh thats why my consultant runs a clinic in the hospital every Tue (or what ever) , all these Doctors have little else to do." That tends to shut them up .


good luck and soft hugs
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Re: First person I told I had Fibromyalgia :(

Postby Lemonie » Fri Apr 26, 2013 9:47 am

Thanks for the replies :-)

I think I need to toughen up and know my stuff now. I was taken aback as I have been made to feel like a hypochondriac for quite a while and to be finally given a diagnosis it felt like such a relief but then for the condition to be ridiculed, it hurt. Am going to read up on my facts and get ready for the next numpty who crosses my path.

Thanks for the support :lol:
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Re: First person I told I had Fibromyalgia :(

Postby Iceskatemum » Fri Apr 26, 2013 11:36 am

Lemonie ....love your Avatar...must get myself one fed up being the invisable person. Now what shall I choose? :lol: ;-)
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