Thursday, October 20, 2011

Mission 2011: Finding Social Support Through Social Media

photo by crirez

My Life Resembles a Commercial 

Have you seen that commercial on TV with the young woman who is trying to get her parents connected on Facebook?  She comments that they only have 19 friends there; meanwhile her parents out mountain biking with their friends.  She, on the other hand, has 687 friends on Facebook and is sitting at home in front of her computer.

I got a chuckle watching that commercial.

Then I went to lunch with a very good friend of mine.  She has been diagnosed with a pretty awful illness, Lymphangioleiomyomatosis (LAM), that one day will limit her ability to do things.  So when I told her how I use social media to connect to other people, she told me she is trying to be like those parents.  She wants to get out there and experience as much of life as she can before her life resembles, well, mine.

We both got a chuckle out of her comment.

My Social Reality

I can't be mad at her for pointing out the obvious.  She is blessed because right now her illness isn't making her mostly housebound and unable to work.  She doesn't spend much time on social media sites because she is busy with real life.

If I was in her position, I wouldn't be spending much time with social media either.

The truth of my current situation is that I spend a lot of my time alone.  I have a very limited ability to participate in social activities because of chronic and persistent pain and fatigue. When I can participate, it takes extensive planning on my part, as well as a lot of assistance from my family and friends to make it happen.

Even then, there is always the chance that I might have to cancel at the last minute because my body won't cooperate.

To be honest, I don't see a lot of my real life, in-person friends very often because my very specific requirements for getting together don't mesh with their lifestyles.  That's just the way it is. 

From Real Life Disappointment...

I guess I knew this was going to happen, which is why when I first was diagnosed with fibromyalgia and chronic pain I made a huge effort to find a weekly in-person support group.  I had such a positive experience with the weekly young adult cancer support group I participated in from 1988 to 1992.  I wanted that same kind of experience again as I began to face a life with chronic illness.

So I searched high and low...and came up empty handed.  

The closest I got was a monthly support group, which I tried for a while. With chronic illness making life pretty unpredictable for myself and others, the group was not well attended.  People came and went, often before I was able to get their contact information so we could stay in touch.  Then when I lost my transportation assistance, which was key to my regular attendance, I stopped going too.

...To Online Friendships

Eventually, I turned to the Internet.  It was actually one of my real life friends who pushed me in the direction of blogging, Twitter and Facebook.  (She is now one of those real life friends I hardly see anymore--yes, that is ironic, isn't it?)

From that initial exposure, I went on to discover websites and blogs that included community building tools like forums and chats that took meeting people and getting support to a whole new level.  Through my blogging, I discovered blog carnivals where I met other bloggers and worked collaboratively with them around issues and themes of mutual interest.

Flash forward to today and I thank the Universe every day that websites like Facebook, Blogger and Twitter exist.

Without them, I would be really lonely...

I have more to say on the topic of social support and social media, so please come back and join me next Thursday when I plan to continue this discussion.

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Pamlati said...

OMGH!! I'm the same way.. I'm 20 and barely Have no real Life friends. all I have are friends online plus My family and like 4 friends here in My city But the RA also... No One understands Or doesn't see How, some "old persons' Disease can hurt me So much.. Now I don't really care much But I lost More friends Then making them But my friends on twitter and FB and Blogs are closer to me and Listen to me more Then any friends (who aren't family) Then any friends in Real Life.. she Will come around it just takes Him. when I was Really down about My diseases and all My friends Dumped me. I found friends online.
Sorry for the Long post!
God Bless! XOXO -Pamela <3

Felicia Fibro said...

I love that series of commercials!