How to get involved
Well, let me start out by saying that I have had a lot of readers message me on Facebook, asking me how they can ‘get involved’ within the MS Community. So, I thought that writing an article about it would help answer a lot of questions for everyone.
Now let me start out by saying that, when I was diagnosed in August 2010 at the age of 22, I wanted to ‘talk’ to other people with MS, to see how they were doing and answer some of the questions I had. However, I didn’t want to go to a local meeting… because at the time, I was scared… completely terrified of what would happen to me in the future. Everything I had looked up online made some sort of reference to wheelchairs, disability, etc. So, at that point in time, I didn’t want to ‘face my fears’ going to a local meeting.
I found MSWorld.org through the National MS Society. Why did it grab my attention? Because it offers a Live Chat Room & Message Board... I finally found a way to take part in the MS Community, and ask the questions I had but I didn’t have to do it one-on-one.
Now don’t get me wrong, I know now that there isn’t anything bad or terrifying about going to meet with people in a local MS meeting, but at the time I was clueless as to what MS really was and what was going to happen.
I have since been involved in the MS Community in many different ways. I still don’t go to the local MS meetings, hosted by my Local National MS Society Chapter, but it has more to do with... I just don’t have the time to get out to a meeting.
I am now a volunteer at MSWorld as the Social Media Director & the Content Management Director. Words can’t describe the friendships I’ve made by simply visiting their website all those years ago. I get to talk to people from all over the world, at any time of day, coming from every type of background.
So, let me just say that if you’re reading this... it seems that you have taken the first step in to getting involved in the MS Community, and talking with others that live with Multiple Sclerosis.
You can even use the MultipleSclerosis.net “Community” area or their Facebook & Twitter to get involved. There is even a list put together on MSWorld’s Resource Center, listing ‘legit’ MS organizations and resources you can go to.
It will probably surprise you about how much is out there and what all you can take part in. You can probably join a MS Community/Group just on your Social Media Outlet aka Facebook and Twitter.
Do you gain support by going to places like MSWorld and MultipleSclerosis.net? Yes, of course you do. But you also get to hear how other people live with MS, tips or ideas on how they make things easier... or how to find a MS Specialist in your area. I do know that it is hard to find a MS Specialist close by, if you live in a rural area… but there are resources that can help you find those resources, so you aren’t searching on your own. (Click here, then click on “How do I find a neurologist specializing in MS?” for some tips.
Another way I stay ‘involved’ in the MS Community, specifically on what is going on in the World of MS, is by checking the News Outlets available on many different MS Organization Websites. I also signed up for a “Google Alert”, which will e-mail me daily/weekly e-mails about what has been published online recently about Multiple Sclerosis. Of course, I go to MS Conferences on behalf of MSWorld’s Conference Center, as well. So that’s a good way to stay up-to-date on what’s going on in Research & News, but in a “patient friendly” manner. MSWorld also has a ‘news feed’ for MS News.
There are even Apps out there to help you out along the way. I really do need to make a list of those, speaking of which. Maybe I can do that soon? But I do use things like MS Manager by MSAA, for example. MSAA’s website also has a lot of helpful resources as well!
In the past, I wrote an article on “Building Your Healthcare Team” that you might want to check out! Some other helpful resources to check out if you want to get involved in the ‘studies/research’ for MS are NARCOMS & iConquerMS.
Also – don’t forget to follow other MS Advocates, like myself, that write on MultipleSclerosis.net. Click here to check out all of them.
“My strength did not come from lifting weights. My strength came from lifting myself up when I was knocked down.” – Unknown
(P.S. I know that there are a lot of ‘linked’ words/text in this article, but there are some great resources & information to look into by clicking on them.)
How do you feel before getting an MRI done?