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A MyMSTeam Member asked a question 💭
Tonawanda, NY

I was diagnosed in May 2017, but i still haven't told the majority of my friends and family. I don't to be looked at differently, but wondered what others do/did?

January 6, 2018
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A MyMSTeam Member

Who knows what the right answer is here. I was dx December of 2015 and pretty much had to be open about what was going on at work. This resulted in a strange situation (that kinda still exists) where more of my work colleagues know what's going on than extended family/friends outside of work. I'm not uber public about it (ex. NOT on Facebook about it), but am very comfortable being open and vulnerable here amongst folks who understand.

In retrospect, being so transparent at work maybe wasn't the right call. They ended up making it really difficult to me to return from medical leave (I'm expensive) and eventually this past fall had to disability retire from the school district which was, at first, a major bummer. (Side note: new doors have opened and I wouldn't trade them for my old gig, so MS has in many ways been an odd blessing.)

My advice: tell who you really want to tell, consider sharing with them a one-pager about MS or something comparable so they understand what you're really facing. I found that very few people actually knew correct facts about MS but everyone had notions that my life was over and found it their job to inform me of this which was pretty annoying. I found some great resources online about MS that were helpful for various people in my life and hearing about MS from someone other than me was really effective in helping them understand in a way that I couldn't articulate as well. The emotional hugs and sobbing from some people made me pretty uncomfortable. If someone isn't a true friend that you can trust, I'd keep your news to yourself if you are in any way worried about it getting out. Yeah, I've ended a few friendships (well, really just let the distance widen) and I don't really miss those folks. I have fewer friends, but they are of higher caliber and I know I can always depend on them.

Like everything with this disease, it impacts us all differently, and everyone we choose to share our news with will all take it differently, too. Good luck with this! No easy answer! But one thing's for sure - you have a great support team here! XX

January 6, 2018
A MyMSTeam Member

I should say that overall, those who do know have been great. For those people, I’m very open about MS itself and try to educate overall. I also let them know I’m an open book and that I truly don’t mind answering any question about me and things I’m dealing with or have dealth with, or just MS itself. (I’m still working on admitting the bad moments when I should ask for a lil extra help, mostly when I’m on a time crunch either at home or work). I have had a few people that make suggestions on things to do because their friend knew a person whose aunt did xyz, and I appreciate any ideas so long as they don’t preach and understand that it’s not that simple (nor the “cure”, as no one has found that so their idea probably has been tried and tested lol). When I do tell more people, I know there will be some who will cross that line and not drop it, which I’d probably not have much problem putting them in their place (nicely, yet firmly).

January 6, 2018
A MyMSTeam Member

You will find out who is truly there for you in the long run.

January 6, 2018
A MyMSTeam Member

Everyone in my life has always known within a few days of my diagnosis .....I have never felt like hiding anything about my MS and have only had positive feedback. It does put pressure on others as to how they react to me, but I try to help them .....that them helps them cope with all other disabilities as well.

Preaching away about myself again, I do understand that not everyone is in a position to do what I gave done, and equally could be met with a completely different response

January 6, 2018 (edited)
A MyMSTeam Member

Whoa I really concur with every bit of that 100%. Thanks for your reply, hearing it from someone whose also going through it helps.

January 6, 2018

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