it’s ironic: invisible condition, invisible people & social networking

myfoggybraini found out i had fibromyalgia over a year ago… i started reading books and attempting to learn as much as possible, yet after a year has passed, i feel like i was not taking in as much information in as i should. in the last four weeks, i have learned more than in the entire year, not by books or doctors, but by social networking.

my name is “my foggy brain” and i am a fibromite. i have the “invisible condition” noone wants to believe and noone can see. the strange thing is, social media, by definition is “the unseen”. it is virtual. it is facebook… it is twitter… it is blogging. so i remain “invisible”. i remain invisible by choice. i admit i am new to this. i have only been doing the fibro twitter and blog thing for a month so maybe there is a time when people get together. i’m not sure if i’d be up to doing that… i mean by definition, we are a group of people who don’t travel well. i can’t fly and can’t see a time when that would be a good idea. i can’t ride in a car more than 45 minutes without major pain. soooooo where and how would a “tweet up” happen? don’t get me wrong here… i was just sitting here and found it ironic. invisible disease/ invisible people.

i have been doing the social networking thing for a long while now, i have two twitter accounts (probably not such a great idea for someone who can barely finish a sentence… but i digress). i have an account just dedicated to my fibro friends and it is the best thing i could have ever done. very focused, provides me great information and the people… the people are GREAT! the level of support that the people provide to each other is so nice… i would have never thought it would be so nice. it is like a 24/7 support group. i totally underestimated the value of twitter in this respect. i am kept completely up to date on the latest and greatest news, medications, therapies, etc. AND provided wonderful support… AWESOME!

with my blog… i love the comments. it’s nice to know i’m not alone. i have been reading other people’s blogs and it’s been inspiring… so many people are suffering from fibromyalgia and feel alone and many don’t have a lot of support. it’s hard to read, i want to reach out and jump through my laptop and help. this condition is so tough… it affects people in so many different ways…  the worst part about it to me is that it seems to affect people who in the earlier years were HIGH HIGH HIGH performers. people who went out of their way to help others and were always  doing too much and basically burned out their bodies. now when they need help, they don’t have a support system. just doesn’t make sense.

what do you think?

btw… if you want to follow me… i am @myfoggybrain

thanks for reading! stay cool!

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3 thoughts on “it’s ironic: invisible condition, invisible people & social networking

  1. Fibromites, Spoonies, ChronicBabes…whatever ya want to call us, here we are. At least this print is visible even if we’re invisible.

    I think Twitter is great for those of us that can’t complete a sentence without getting lost in the great abyss between the beginning and the end. When you’re limited to 140 characters you’re less likely to get lost, right?. Well, I still manage to get convoluted and lost, but whatever. I’ll just blame the fibro and call it good.

    Thank you so much for the RT on Twitter for Advocacy for Chronically Ill Patients at http://tiny.cc/H1khp That’s a project that is totally near and dear to my heart. Jennifer just rocks. If you get a chance check out her blog at http://advocacyforpatients.blogspot.com/ She doesn’t have fibro, but she’s definitely chronic in a bad way but she still fights (brilliantly) for the little guy.

    BTW, your puppy makes me smile too…I’ll come visit your blog just for the pic! And I’ll stay for the posts, of course.

  2. Just wanted to say “hi”. I’m like you. I was diagnosed with Fibromyalgia in 2008 and discovered that social networking with fibromites is a wonderful way to stay motivated and help others do the same. I like the way you realized the invisibleness link.

    I look forward to reading more of your blog posts.

    • Thank you so much for your comments and the follow on Twitter… I really appreciate it. It’s encouraging to hear that people are actually reading and enjoying my blog! I will check out your blog as well… have a great and painless day!

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