It’s hard to believe, but back in 2006, when I was diagnosed with multiple sclerosis, the only person I knew who had the disease was my uncle — and he never talked about it. See, he was (and sometimes still is) a runner! MS hasn’t stopped him from being athletic, which is good, since exercise is a very important part of maintaining good health while having our condition.
You’d think that the first thing I’d do would be to run to him for advice, but I didn’t. I had to figure out things for myself. (Don’t get me wrong. I still called him, but I wasn’t about to hound him to tell me how to make things “better.”) I was astounded by the number of people who said, “Oh my [insert relative] has that!” and how many folks were basically shoving phone numbers in my hand.
Now, anybody who has had a chronic illness can tell you: the first thing you want to do when you get a diagnosis you don’t like is to go into hiding or cocoon. You don’t exactly want to use it as a platform for making friends with perfect strangers… but they’ve got all the secrets and shortcuts to feeling better.
Folks who were diagnosed before you have been to the rodeo! They’ve seen the evil bull-of-medical-destiny knock riders off in less than 8 seconds and watched the clowns get that angry fucker right back in the pen. It’s worth listening to them, in other words.
That’s why I was so excited when I found out that there is a Facebook group for people in the Chicagoland-area who are in their 20s and 30s who have MS called “Empowered Living.” It was a great big ole positive for the move, as I now have an online support group of locals who deeply understand what life’s like for me, who are all within an hour’s drive! There’s another group on there called MS is BS where our misery loves company, too.
It’s one thing to chart your physical symptoms and have forums on Patients Like Me, but having an age and locality specialized support group has made a big difference in feeling like I’m not alone.
Truly, these online support groups remind me of when I was younger and made friends on Shadowscape and on other BBSes. All of us kids in the same age range had the similar hobby of computer geekery. Here, we have similar lifestyles and a condition that keep us comrades in the War against Whiny-ness.
On G+, I even have circles just for my MS buddies!
What about you, readers? Do you have any online MS or epilepsy support groups that you love?