Last reply 5 months ago
Testing the waters…

Hi – newly diagnosed (end of last summer) and started Tecfidera with mostly no adverse side effects (phew!).

I am starting to share a bit more widely than with immediate family and close friends but find it hard to deal with the ‘head-tilt’ of sympathy and the “how are you doing today?” which, whilst kindly meant, is a bit annoying when it is my aim that it changes my life and routine as little as possible.

How do other people communicate it and, if you have had similar experiences afterwards, how do you react/deal with it?

I guess there are always lots of questions but those are the things that I’m struggling with most at the moment. Thanks 🙂

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5 months ago

Hi @toubabinknots
Welcome to the club.
Don’t ever feel embarrassed you’ve done nothing wrong.
Like you mentioned people give you that look….. you know the one.
Just keep being you, I try to make fun of myself in a round about way, it kinda takes the edge of things and removes awkwardness.
Offer up with the likes of anything you’d like to know about it? Without being sarcastic. It puts them at ease.
That’s my way but others might not be comfortable with that approach.
Just keep being you that’s who they know.
Any one you meet in the future is still meeting you but they will only know you as you now .
Happy trails

5 months ago

Hi there… I had the same problem, especially with my mom. I finally just had to be blunt and tell her to stop always asking me. I told her that I would let her know how I was feeling if I chose to… If not, don’t ask. But now that I have been dealing with my MS for the past 21 years, I have come to realize that the people who actually ask “how my doing“ really care about me. Sometimes it’s just easier to answer with “ I am fine, thanks for asking… how are you?“ and turn the conversation back to them. Sorry to say though, that “pity look“ never goes away, at least for me it hasn’t. Just try to remember that these same people have the best intentions. 😊

5 months ago

I totally agree with @highlander. I also use humor in a self deprivating way in order to ease somebody who might be staring or noticing something quirky that I might do. Laughter is the best medicine. 🤣

5 months ago

Hello @toubabinknots, yes, this is the very reason that it took two years to go public with my diagnosis just recently. If people push me on it, I say ‘quite frankly, I find it all very boring now, but thanks for asking!’ Most people I told by email, telling them that this was easier than repeating the whole shaboodle over and over again. However, as said above, people do genuinely have the best intentions, I get that. Anyway, that’s my story, hope you battle on through x PS, I’ve been on Tec for 2 years with virtually no ill effects

5 months ago

Thanks all – appreciated and encouraged.

5 months ago

I have found it a waste of my energy to work out why people react the way they do. I admit, though, that had I not known about MS, perhaps I would be acting in the same way…. People generally don’t react well, so it’s not worth the bother. Better things to do with my time.

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