February 24, 2009

Mind power?

I used to spend quite a bit of time in this one MS-centric forum on the web. It's a web site that has experienced some positive press in articles and broadcasts by the New York Times, Business Week and CNN. In less than a year I've seen this site grow in total membership by more than 4,000 people.

I find that now I don't have the patience to keep up with how busy the discussion boards are there these days. There is a lot of crap on there and a ridiculous amount of trivial bullshit.

I feel for the newly diagnosed and was once there myself, but feel as though I can't hold their hands and answer all their questions. I really don't remember being like that, so freaked out by every little symptom. I only freaked when I couldn't speak, walk or see. I sometimes worry that I am losing empathy.

In reality though, I'm not. I'm simply out of patience with people who would rather wallow in an unpleasant mindset than make any effort at all to take charge and find a way to get out of it. Life is good. If at any time I start to question that statement I just think about those who have lost their homes, can't pay their utilities, can't afford food at the grocery.

My point is: MS sucks, but things could really be a whole helluva lot worse. Suck it up people!

P.S. I'd like to give props to Jess, whose words I have seriously borrowed for this post.




I know exactly what you are talking about and agree with your assessment of the community over there. The focus is not on self-empowerment. If it were, there would not be all of the crap and trivial bullshit.

There so much I could say about the site in particular, especially in light of the attention they are receiving. In health policy circles, I often wish to tell the truth of the situation. But those who think Health 2.0 and patient communities are going to be key in solving some health problems would not be the ones to listen with open hears, unfortunately.

Kelley said...

Great post! I am not familiar enough with the multiple MS online communities to know the particular one of which you speak. However, I belong to a Yahoo group for MS that is similar.

I totally agree with you! You have to empower yourself to manage your symptoms. Granted, there are many aspects of MS that are unpredictable, but not untreatable.

Don't you just want to tell some people to STFU, quit whining and DO something? I know it sounds insensitive, but seriously!


Anne P said...

AMEN! Thank you so much for "getting" it. Kelley, you crack me up, seriously.

Yesterday, my BF was getting out of bed and said "Honey, when I sit up in bed and cross legs at the ankle my bottom foot goes numb. Can you find a web site where I can whine about it?"

God bless him, he gets to hear me say STFU to my laptop all day long, reading some of the stupid shit I was complaining about. LOL

Glenn said...

The new 'Hide Off-Topic' feature helps alot. I can actually make it through the first 3 pages without my head exploding. ;-)