Hi! I was diagnosed almost 10 years ago when i was 21. At the time, i really hid my diagnosis from most friends and family as i progressed through school and my career. Im in a place now where i want more support and i am also “owning” my diagnosis and am not ashamed to share it.
How did you all navigate sharing your diagnosis widely? I am thinking of doing a facebook post/email. Any positive or negative stories are welcome.
Im pretty secretive because most people are just curious, they dont really care. I told a select few number of people..but not many check in. When we do talk, they ask how I am, etc. But it isnt what maybe I thought it'd be? Or hoped it be? I guess you just need to focus in on what you are hoping to gain from divulging? And then..keep in mind everyone will go to Google and assume the worst scenario..is YOUR life 🤷 If facebook is your platform of choice, I would atleast do a private message to the closest people you have on there...not all 200 of your acquaintances...you know what I mean? But thats me. Let us know how it goes!
I think MS awareness month could be a good time for you to do a wider "press" release about your diagnosis. That way you can spend one post explaining the scientific definition of MS and then post over the next three weeks about what MS means to you about how you needed to hide your MS for so long and now are ready to share your disease. MS awareness month is in March. Obviously don't wait until then to tell those close to you but consider waiting for the peanut gallery as it makes sense then. Consider telling the HR department at your work certainly if you think you need accomodations at work. I know the hardest thing about my diagnosis wasn't the fact I had MS but the misunderstanding of what MS was by many of the people I worked with (I was so relieved it was "just MS" and not the brain tumor the first doc thought it was, I blabbed about having "just MS" to my bosses at work. Boy was that a sh*t show everything from a co-worker crying her eyes out to the point I started consoling her to me explaining my goals hadn't changed just because of a diagnosis. Believe me, you don't want that!)
I shared my MS fundraiser on Facebook when it was MS awareness month. People were so supportive, and none had ever suspected that I had MS. I think it’s an ok way for people to learn about your diagnosis.
Best of luck to you!
I'm 8 years past diagnosis and still leaking out the viability of my MS. I don't put a lot of pomp and circumstance around it. When someone asks why I am walking with a walking stick I just let them know I have MS. If they have questions I gladly answer or else just leave it at that. I used to be so stubborn about hiding it but it feels great just taking care of me even though others can see it now. I did not specifically post about it through facebook but I also don't hide it. I think it's hard and draining to hide this. All my best to your showing you!
I wish sometimes I never told anyone,because once they knew automatically they treat you different, like you can't achieve what someone else that doesn't have ms can. Don't sell me short because of their prospective of the illness or what was read online about the illness.