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Urge to tell people?

After a year in limbo I have just been given a 'working diagnosis' of MS. It wasn't a surprise and to be honest was a bit of a relief to finally be able to put a name to what has been going on and stop me worrying that people would think I was making it up or imagining it.

But now I have a dilemma. I am now dealing with the urge to tell people. I have told only a couple of family members but think I want to put the news out there so to speak so people can know and I can move on and not worry about them finding out etc but just on with my life.

Did anyone else have that urge? I am self-employed with a very supportive partner so none of that is an issue- more telling friends, other family and work-related people.

I'm not sure if it isn't wise to tell in case there is some prejudice with work issues, but I think I am fortunate in this shouldn't be an issue, but is it better to just 'come clean' and move on?

All advice and experiences gratefully received!

Hi there

Yes it is a relief to know what it is and know that you were right In knowing something was wrong with you.

I also felt the urge to tell people as you want to just get on with your life without having to constantly explain to people. I was dx in December and I’m still encountering people that don’t know yet and it can be awkward as people just don’t know what to say.

Just take life from day-to-day, it’s not easy but you’ve still got lots of living to do!

Thinking of you,

Teresa xx

Hi LondonLiving & welcome to the site happy2

Congratulations and commiserations.....because receiving a firm diagnosis is definitely a double edged sword and so I never quite know which one to say to people!

Personally I told people. Close friends & family knew I was having problems anyway as did my bosses and a few colleagues, so telling them my official diagnosis wasn't an issue for me. But some people do prefer to keep it to themselves - it's very much personal choice.

To my mind the more people that 'know' within your circle then the better support network you have. It won't necessarily follow that they'll know anything about ms though so it'll pay you to order some publications - of which there's a large choice - and are available from this site and the ms trust website. You can download them, read them online or order the hard copies to have delivered directly to you at home. In fact you'll probably find them very beneficial - and there is one on work related issues too!

You said you're self employed so if you're in a trade where you think the news could have an impact on your business & therefore your income then keep the news to just a chosen few for now - maybe the ones that you know best? 

I have to say that in my case everyone has been very supportive - my bosses & colleagues have been wonderful as have family & friends. Only 2 people took the 'other attitude' and decided I wasn't worth sticking around with anymore...and they were both 'so called' friends'! But they're not anymore....lol...

The other thing to mention is medications. Receiving a firm diagnosis is beneficial in terms of meds and various services & support. Have you been assigned an ms nurse yet? Have dmd's been mentioned to you? It's worth checking out the ms decisions website which is useful when making the decision as to which one is best suited to your lifestyle - if you've been offered them that is.

But getting back to your question about telling people; from my experience it's been of great benefit to me by letting people know my dx. Mull it over before taking the plunge with your business customers that perhaps you don't know so well is what I'd say.

Good luck

Debbie xx

 

 

Hi there,

I didn't tell absolutely everyone, down to mere acquaintances, but I did tell all those most likely to notice and be affected by my illness - i.e. family, close friends, and work.

I could have chosen only to tell boss/HR, but as I thought immediate colleagues were likely to have to shoulder extra work, as a result of what might have looked like laziness, they were owed a proper explanation.

Overall, I have found it of benefit to be frank with people.  And in some cases, there was no choice - for example to claim on my critical illness policy, which was part of my work benefits package, there didn't seem to be any route except to go through HR!  You can hardly make a critical illness claim without even the least bright HR bod working out that you must have a critical illness.

The only thing I would say is I'm not sure what a "working diagnosis" is - it sounds short of a confirmed diagnosis.  There is a remote chance you'd end up with egg on your face, if you went round telling everyone "it's MS", but the "working diagnosis" was later jettisoned.

Now I don't think consultants go round introducing the idea that somebody has MS, unless they're pretty sure.  You wouldn't alarm a patient unnecessarily, would you?  So when my consultant told me MS was "the most likely" - months before my official diagnosis - I knew he must already be fairly confident, otherwise he wouldn't even have mentioned it!  So I spent the next six months knowing, but being technically unable to prove it, until further scans led to my confirmed diagnosis.

So I don't think it's very likely your diagnosis is going to change.  However, unless and until it's confirmed, there's always that small possibility.  The way my consultant put it: "Common things are common; rare things are rare".

By which he meant that MS, being the commonest disabling neurological condition amoung young people was far more likely to be the explanation than certain other rare and weird conditions that can produce similar signs and symptoms.

However, you need to be aware there ARE rare things that can look similar, so until you're told 100% it's MS, there's always the slight possibility they might revise the diagnosis to one of those rare things.

Could be embarrassing if you've already told everyone it's MS!  So perhaps the best course is complete honesty.  Rather than saying, as a certainty, "I have MS", perhaps you could say: "It's virtually certain it's MS now - they've ruled out most other things".  That way, if your consultant did come back later, and say, in the light of all the evidence, he's changed his mind, you wouldn't be left looking silly - or worse still, a liar.

Tina

Hello, and welcome to the site happy2

 

I'm with Tina on this one - "working diagnosis" is normally a term used to describe the neuro's best guess at that moment. That means that it will only be confirmed as MS if test results support it. It also means that it is not actually a proper diagnosis so the best you can really tell people is, "They think I might have MS." For what it's worth, that's what I told people before I had it confirmed and it was fine.

 

I've never really cared whether or not people know, so if someone asked why I was walking funny or out of the office a lot or whatever, I told them. I also made sure to keep my boss informed, but you obviously don't have that problem. I usually didn't tell short-term clients when I went self employed, but I usually told longer-term clients so that they were understanding when I declined taking on extra work or had to move days about.

 

I guess, for me, I simply told people who would want or need to know.

 

Do whatever you feel is right for you.

Karen x

Hello X I'm in 'totally-nuts-land' at the moment - reacting to the first MS 'whisperings' and obvious discomfort amongst the docs I'm seeing!!

I've been blurting it out to totally random people!! Poor buggers!! 8/

 

Oh! I used the word Bu**ers! nothing worse I promise!! Should I apologise to someone in authority ?? Eww! I'm not normally a swearer - honest!!

Sorry xxx

Jen xxx 8/

Thank you all for your advice. I should have explained clearer- I have known for over a year it was possibly MS and didn't tell people as didn't want to have the 'oops, I was wrong' conversation happy2

But after a year of tests, MRIs, lumpar puncture, hospital admissions, everything else being ruled out etc my consultant has said he is positive it is MS but until signs show on an MRI he can't give me an official diagnosis. Apparently they don't show in 5% of cases?

He has introduced me to the MS nurses, referred me for fatigue management and I'm about to start a course of treatment - so although it is only called a 'working diagnosis' it's as close as I can get at the moment.

I think it's just I have the urge to say it, and then move on. I do a team sport and only two people know why I have been absent most of the year and I have heard whispers that people are annoyed with me not turning up, not helping out etc and I would also like to say it to them so they understand why I haven't been around. I am worried about any prejudice etc but I guess anyone who raises that as an issue can be told that as I've had this for 18+ months and it's not affected my work (fortunately- I am in a very lucky position) and they hadn't noticed before then I guess there's nothing for them to be worried about! happy2