This Is MS Multiple Sclerosis Knowledge & Support Community

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?

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.

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.

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

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.

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. ;)

I have only told my family and a few very close friends and my husband. I don't have any noticeable symptoms so I can still get away with not telling work. It weighs on my mind, but I keep thinking I am doing well and hope that continues. The power of positive thought is my line of thinking so far (I have the reality that could change at any time).

Most people don't get it and think your strange or weird or they just don't say anything at all. It is truly a measure to determine who cares and who doesn't. I can't say that telling my family at least outside my immediate family has benefited me in any way. They usually try to parallel someone else they know with MS, and as we all know each person is very different in what they experience.

My aunt used to talk very poorly about her cousin that has MS in front of me all the time years ago. This was way before I was diagnosed. This is the type of person that is not worth telling anything to IMO.

In my experience it causes people to think your not as capable or dependable and that is not the case, so I defer to tell really anyone other than those that are on a "need to know" basis. It really isn't anyone's business unless they need to know because of work or something that your unable to do at the time and even then an excuse may be able to be made.

Best scenario for me has been to care and talk to those in need and understand what they are going through vs. explaining anything I have to deal with. I love this forum and think its a great resource to communicate with people that have similar situations and how they deal with them.