Hi everyone! I am going to keep this one semi-short, but I want to take a minute to talk about the MS community that is on Twitter. Twitter seems to be the go-to platform if you’re searching for information, real-time reactions to something, or following along with a specific topic or person that interests you. I recently joined Twitter to connect with others within the MS community, and I have to say, I have come across a ton of amazing people on there.
On Twitter, we have our wonderful MS neurologists that are the experts in this field, they will sometimes even take the time to answer questions that we may have for them. We have our MS activists that are campaigning for better care and more fair treatments for our community. We have our seasoned MS veterans that are full of knowledge and willing to lend a hand to anyone that is in need. Lastly, we have the people that come to Twitter because they are newly diagnosed and looking for answers. We have to remember that MS is being diagnosed everyday and people are scratching and clawing for answers, looking for help, and trying to deal with their world being flipped upside down. I think we can all remember our “D-Day” (diagnose day).
Whenever I see someone come to Twitter and post about being newly diagnosed and feeling lost and hopeless, my heart always hurts for them. This feeling of desperation is all to familiar for a lot of us, and I can’t help myself but to offer them a helping hand and words of encouragements. I wish I was more open about my illness out of the gates, I think I would have made better choices for myself if I would have allowed myself to lean on the MS community for help. The remarkable thing is that the MS community is always there to lift these newly diagnosed people up and guide them in the right direction.
Last month, I asked a question on Twitter: “Best piece of advise you could give someone newly diagnosed?”
I didn’t ask this question for any particular rhyme or reason, but boy did the MS community show up with some great advice! I read every single comment, and I have hand selected four comments that I couldn’t agree more with (although I received several great comments). These are in no particular order, but all of them are fantastic pieces of advice for those people that are newly diagnosed, I wish someone could have said these things to me early-on:
While Twitter is definitely a controversial platform for many, it certainly has a place for the MS community and is filled with a lot of great resources for us. People always talk about having tools in our tools chest when dealing with a chronic-irreversible disease, and I believe this platform could be a helpful tool as we navigate this unforgivable and unpredictable illness.
Keep up the good fight!
2 thoughts on “MS on Twitter”
Thank you for recognizing the MS community!
Good for you for not only jumping in full force to self-advocate for yourself but for staying curious while also offering others what you’ve learned so far.
That is exactly what our community is all about!
When I was diagnosed in 1986 there were no meds and no internet. Yikes! That’s why I advocate. To help others feel less alone, unlike how I felt way back then.