Wednesday, October 10, 2012

Can You, and Should You, Live Your Chronic Life Online?


Over the weekend I was reading some articles on social media etiquette.  This was after a couple of weird online encounters which got me thinking about the subject. So I searched to see what others were saying and found some good posts (see Related Articles below).

But as a person living with chronic illness, I was a little taken aback by this rule from the article Rules Of Facebook Etiquette: Tips To Help Keep Friends:
"Social media may be great for sharing and keeping in touch with people but it's not a replacement for human contact."
I understand that for healthy folks this rule might apply.  But for those of us who are sick, can this, and should this, really apply to us?

First Impression

My first thought was, Yes, I would love to have regular, in-person contact with my friends who live in Los Angeles.  This absolutely would be a wonderful and healthy thing for me to do!  If I was able to do this, then social media would definitely be an interim way to connect with friends between in-person visits.

Ah, but only if I was able to do this.

Obstacle #1: My Chronic Illnesses

The first obstacle for me to overcome is my abundance of disabling chronic illness symptoms.  After 8 years, I am doing much better at managing these symptoms.  But managing my symptoms is NOT the same as having control over them, and I still periodically get flare-ups and new, unexpected symptoms.

That makes getting together with others something that happens infrequently; my in-person social life is only an option when I am feeling OK.

Obstacle #2: Transportation

If feeling well enough to see people is the first hurdle, then getting to the place where my friend are at is the second.

This is a problem of logistics and my health really does dictate what works and what doesn't.  So to get together with a friend, these are the conditions:
  • If I am able to drive, my friends need to meet me inside the radius of my comfortable driving distance
  • If I am unable to drive, my friends need to come to my place and get me, then drive us to our destination
"But there has to be other ways for you to get around, right?" Believe me, I've explored other transportation options in Los Angeles and it is a nightmare.

The bus system in L.A. is overcrowded, slow, not very disabled-friendly and requires more walking than I am currently able to do.  Plus it puts me at risk for heat-related illnesses when waiting at unsheltered bus stops or riding in a crowded bus.  

Paratransit disenrolled me from the program when I told them I had a scooter.  In hindsight, that was a mistake on my part, because a travel scooter is really just the wimpy cousin of the full-size scooter, which is what I would really need to travel around by bus.  I could have appealed and gone back that Summer to re-qualify, but declined since their evaluation center in East Los Angeles is a sweltering hot warehouse space. Why?  Because it doesn't have any air-conditioning!

Other options are taxi cabs and private car services, but they are just too expensive--especially since during the L.A. rush hour it can take an hour just to go just 5 miles.  Seriously.

My Opinion

Wow, let's face it: when you are a sick chick, "getting together with friends" takes on whole new meaning.  It probably doesn't help that I live in Los Angeles either, fondly referred to as the "Car Capital of the World."

That said, I still hope that one day I am able to recover enough so that my health is no longer an obstacle to social interaction.

When chronic illness really limits that in-person option, isn't it nice to know there is at least one place to turn to for social support?  I get it that connecting in social media is not the same as connecting in-person.  But those outside our chronic illness community fail to recognize this as a concern worthy of attention and funding. After all, there are senior centers for the elderly, a place where they can go to socialize and recreate, which provide transportation so they can get there.  Why isn't there a real-world place for adults with chronic illness to meet, socialize and come together?

Online is better than nothing!  I know if I didn't have the option of connecting with others via the Internet, I would definitely feel much more alone, lonely and unsupported.  It fills a pretty important need for me, one that isn't really being met anywhere else.

But enough about me.  What do you think about this topic?  Leave me a comment and let me know.

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1 comment

Sarah Mae said...

On a GOOD day, I spend 90% of my day in bed.
And I have many more bad days than good days. I need the internet. I need facebook and blogs and yahoo groups. I'd go absolutely crazy without those things and the friends I have met through them. I see my mom for a few hours each night between her getting home from work and heading to bed.. and most days, that is the extent of my human interaction. There's only so many hours I can carry on conversations with my 3 cats (but believe me, I do that too!)