Who to tell? What to tell? How much to tell?

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Who to tell? What to tell? How much to tell?

Postby Trevvian » Mon Aug 26, 2013 4:29 pm

Just diagnosed 6 weeks ago & I pretty much blurted to everyone I know. Well, that's exaggerating, but I told 4 people at work, 4 at church, a support group I'm in, and my whole family. And my hairdresser--but that was imperative, as I was losing function in my left hand & needed a carefree style.

Now I'm regretting being so open; although it hasn't come back to bite me yet, I feel like people look at me funny and I don't know what to say when they ask how I feel. I've pretty much settled on "I feel great...but my body is/isn't cooperating today."

On the other hand, I'm still in the middle of a flare (and in the throes of Tecfidera onboarding side effects) and when I'm tired/fatigued/dragging my foot and in pain, it SHOWS! I've fallen in a couple embarrassing situations and I had someone yesterday ask me if I was using drugs.

I'm grateful for their concern, but I don't always want to get into it. Especially as I'm hoping to get back into remission & be fine for a while again. Any advice on what to say & how to shut down questions? Who did you wish you had told or regret telling?
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Re: Who to tell? What to tell? How much to tell?

Postby Anonymoose » Tue Aug 27, 2013 7:38 am

Tell whomever you are compelled to tell. Eventually the novelty of your situation will wear off and ms won't be center stage any more. If people ask about it and you don't feel like talking just say "I'm getting by." and change the subject. Unless you give details, people won't continue to push the conversation.

Welcome to tims.
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Re: Who to tell? What to tell? How much to tell?

Postby brent » Thu Aug 29, 2013 12:13 am

The people closest to you should know. Atleast that's what I think. As far as other people are concerned I'd say that it's a process. You'll have to tell some of them eventually. And just like Anonymoose said the sensation will settle down eventually. Stay strong and be yourself.
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Re: Who to tell? What to tell? How much to tell?

Postby Ash3 » Thu Aug 29, 2013 6:11 am

Been there done that. It does get better with time. You are going through a lot and it is many stages that you will go through. I try to take everyday as an adventure, some days are better than others but eventually you will have more good days than bad. Stay strong and just try to go with it. Hope this helps. Ash3
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Re: Who to tell? What to tell? How much to tell?

Postby Trevvian » Sun Sep 01, 2013 1:22 pm

All good advice; thanks everyone. I will continue to share with people who need to know and let the rest think what they will.

I laughed out loud at the "novelty of your situation will wear off." I have been a bit self-absorbed lately and probably no one else thinks about me as often as I think they do. :)

Thanks for understanding.
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Re: Who to tell? What to tell? How much to tell?

Postby Fayruz » Sat Nov 30, 2013 1:51 pm

When I was diagnosed I also told quite a lot of people and then a few days later one of this people told another person...that got me thinking and I came to conclusion that I have to be careful whom to tell because when I submit (any kind of information) to anybody they can do with that information what they want -I have no control anymore. As I am a bit of a control freak I don't like that but I kinda got used to it. ;) For a few months after I told them, my friends were very carefully asking me how I'm feeling etc. but now they forgot all about it...they still sdk from time to time, but they are not so "scared" anymore. So yeah, the novelty will wear off. ;)
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