Diagnosed yesterday

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Diagnosed yesterday

Postby darcyjade » Thu Feb 28, 2013 1:50 pm

Hi Everyone

I was diagnosed yesterday after seeing the Rheumatology Consultant for the first time, and after lurking rounds these boards for the past few months I am quite relieved to actually have a diagnosis and not be left hanging in limbo.

I was just wondering how you all went about telling family / friends / random people that you had this?
I too have had had the its all in your head, just pick yourself up comments and that look that says are you on about this again.

My symptoms only started in August last year and by Jan I resigned from my job as a fundraising manager for a well known charity, or should I say was pushed. So a lot has happened in a short space of time and I just want to tell people once and get on with things, not keep explaining myself, especially as I have a hard time recalling what I have said to who.

So, I was wondering about putting a statement on Facebook, or a generic text to those I know telling them and giving them a link about more info if they want it. I don't mind talking about it, if they want to, but just thought if they have the basic facts first it would save a lot of time and they may understand the diagnosis better.

Have any of you done this?
Is this a bad idea / good idea?

Your thoughts will be much appreciated
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Re: Diagnosed yesterday

Postby PeterS » Thu Feb 28, 2013 2:12 pm

Hello darcyjade,

I'm just wandering around the site gathering information, so I'm sure one of the other kind members will have better advice for you soon, but while reading I found there's a great range of posts in the Living with Fibromyalgia section and I liked the post from Shazq:
One to show the non believer's: viewtopic.php?f=2&t=4732

maybe you could ask if you re-post that on your FB account? or even just link to it!
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Re: Diagnosed yesterday

Postby JessL » Thu Feb 28, 2013 2:32 pm

Hi Darcyjade,

Like PeterS I am just wandering around the site familiarising myself with it.

To be honest I havent told that many people at all - one very close friend, my boyfriend and family. I don't really talk about it - it is not something I want alot of people knowing. I am not one for talking about myself/how I am feeling and as I am friends with people I haven't seen for years on Facebook I personally wouldn't post it on there for everyone to see.

I do applaud you for being so open about it! I do wish that I could be more open with the people that do know - all I say is that 'I'm tired/struggling to concentrate/in pain from XXX', I definitely haven't gone into depth about how I feel at all, which is part of the reason I have joined this site - I feel like I need to open up about it a bit more.

I agree with the idea put forward by PeterS - the post from Shazq is so informative and I think that a personal post from someone suffering is always better to read anyway as it gives people an insight that just reading about symptoms wouldn't.
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Re: Diagnosed yesterday

Postby FluppyPuffy » Thu Feb 28, 2013 2:57 pm

Glad you've finally got a dx darcyjade :cow-wave: :cow-wave: :cow-wave:

How we tell people about our condition and problems is a very personal thing, some want all their circle of friends and family to know, as well as employer and work colleagues, whereas others only want to share it with those they consider important to them and those they feel need to know.

For explaining about the condition and how it affects us, Shaz's post that Peter has mentioned does a fantastic job of getting it across to those without FM. Also, adding some general info about the condition, such as found on the NHS site can also help http://www.nhs.uk/conditions/fibromyalg ... ction.aspx

Personally, I think speaking to others face~to~face is the best way to go rather than sending a generic text or posting it on FaceAche as doing it that way, esp on FaceAche, could leave you open to all sorts of unwanted comments and responses from people who may not necessarily be ones that you want to hear from. Or if face~to~face isn't possible with everyone, you could print up some info and let them read it at their leisure.

You know the people that you want to tell and hopefully have a good idea about how they will respond to your dx news, so go with what you feel is right for you.
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Re: Diagnosed yesterday

Postby darcyjade » Thu Feb 28, 2013 4:16 pm

thank you all for getting back to me :-D
On reflection, I think I will tell those I know well face to face and see how it goes.

Many thanks again
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Re: Diagnosed yesterday

Postby shazq » Thu Feb 28, 2013 6:13 pm

:welcome: to the forum darcyjade :wave:
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: Diagnosed yesterday

Postby Crazyfi » Tue Mar 05, 2013 6:12 pm

Hi all,
I've just joined the forum and totally agree that I too found it a relief today upon diagnosis to be able to put a "label" to this invisible thing trying to change the dynamics in my life. I hope to speak to lots of like minded people on here but still trying to work out how the forum works.

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