“The Diagnosis Difference”: stories, chronic conditions & me

“The diagnosis difference cuts another way, too. This study provides evidence that many people with serious health concerns take their health decisions seriously – and are seriously social about gathering and sharing information, both online and offline … Internet users living with chronic conditions stand out from their peers in noteworthy ways: sharing questions online and reading or watching other people’s health stories online.”

– Pew Research Center, November 2013, “The Diagnosis Difference”

I came of age as the internet came of age. I can track my adolescence, and my sometimes-rocky relationship with having multiple chronic conditions, by how I accessed my rare disease community.

It started out in the mid to late ’90s… on rudimentary web forums that were impossible to navigate.  There, discussions were heated and difficult to read but sometimes productive. People were just “meeting”, for the first time, people like them.  We all learned.  We learned what indeed was socially-acceptable in these new, volatile spaces.  We learned to take some things at face value, and others to heart.  We learned what this new sense of community was about.

Then came the better forums, easier to navigate yet also more perilous.  Looking back, in my college-aged naivete, I said things I should not have.  I revealed too much.  But maybe, perhaps, it needed to be said.  People found their voices and a sort of community within these electronic spaces–a community that sometimes translates to a real physical community or friendship and sometimes, perhaps oftentimes, does not. I read more, posted less as I grew older and more wary.

We come upon our present technological state, the era of Facebook and blogs and Twitter feeds and who-knows-what-else. I admit, I eat it all up. I read voraciously, I want to be privy to others’ experiences and advice.  I post and share, too, but I have hang-ups. I, like everyone else who does or does not have chronic health conditions, am complex. I am not a sum of my genetic errors, but I am indelibly defined by them. I uncontrollably hesitate, though, when I sense that I am being viewed primarily through the lens of my conditions only.

Maybe this is why Moebius syndrome is listed as the third of the four things this blog is about.

Because it is about me. Because, while I am defined in many ways (like it or not) by my chronic conditions, it’s more complex. My story is unique, like everyone else’s. I can’t help but get hung up in the pressing question of “why?” Why will whatever I have to say matter to someone else, who isn’t me? I have definitely not done everything “right” in this whole living with a chronic condition thing (if there ever is a “right” way to live), so please don’t use me as any sort of paradigm or inspiration.

People do, though. Because that is what is available. And I can’t blame them. I get sucked in, too, to the stories websites. I read voraciously… and then am left numb. Because, really, what does one do with that voyeuristic feeling after you navigate away back onto Candy Crush or whatever your mind-numbing game of choice is.  That is my fundamental struggle in my life with chronic conditions: what do I do with this reality, with my existence in it?

Pew Research Center, November 2013, “The Diagnosis Difference”

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