August 30, 2010

Chronically Connected

It's virtues are extolled: immediate access to information, improved work/life balance by working from home, and the ability to connect with others around the globe at a minimal cost.  It's also accused of great evils: removing the need for face-to-face communication, facilitating white collar crime, and leading to the muscular atrophy of an entire generation.  What else could have this affect but the World Wide Web!

While it's true, the internet can and is used for the "wrong" reasons and with bad results, the same can be said of religion, airplanes, or freedom of the press.  What's the common link among these ideas and inventions?  They ultimately become tools in the hands of human beings - well-intentioned but imperfect Mankind. 

But just as religion gives billions of people a framework for life, airplanes deliver food and supplies to disaster zones, and free press led to the birth of our nation, the internet gives millions the resources we need to improve our lives in ways never before imagined.  It would have taken our unplugged ancestors a generation or two (or more) to assemble - let alone process - the volumes of information we can now find and search in just a few seconds. 

This access is wonderful, and a gift I make use of many times each day.  However it is not, perhaps, the greatest gift the internet provides. 

Humans are social creatures, hard-wired to need interaction with others - also known as a 'community'.  If you don't believe me, go ahead and use that powerful internet search tool to read about otherwise healthy babies who die in understaffed orphanages for lack of touch or how solitary confinement causes psychophysical distress by denying human interaction.  Or, check out this scholarly article about the science underlying this phenomenon.

We seek to be both one of a million and one in a million; that is, we want to be simultaneously reassured we belong and that we are unique persons whom no one could replace.  But we wouldn't know if either goal were met without KNOWING and RELATING TO other people!  And so we join clubs then seek a leadership role, attend block parties and talk about our latest vacation, or play a team sport and dream of being named MVP.  For the chronically ill, I've found that this mindset takes on a very specific form.  We want to find others with the same symptoms or diagnosis as ourselves, and upon making this connection we immediately begin spouting off our personal stories, complete with symptom progressions, medications, prognosis, and views on the future.

Knowing that I am one of a million (or, in my case with Sjogren's, one of 4 million) Americans with my diagnosis is important to me.  It means information may be available about how to cope with many of the problems I face, and that it's been around long enough for there to be data for use in framing a prognosis.  Moreover, because I know other Sjogies exist, I am guaranteed to find people I can talk to who I know will understand what I mean when I try to describe weird symptoms or processes I go through, and if they understand that must mean I belong.  At the same time, finding these people reaffirms that I am still one in (four) million - we may have the same diagnosis but none of us have exactly the same experience living with it.  There's the obvious differences - severity of symptom progression, comorbid diagnoses, or age - and less obvious ones, e.g. personal stances on specific treatments or even reactions to the same medication.

To my point, social networks or interactions are part of human nature, and take on a prime importance when people are faced with challenges.  Chronically ill persons face the same challenges as the rest of society, but must also cope with their special challenges every day at the same time.  Therefore, it stands to reason that these people experience a greater need for - and find greater benefits in - social venues.  And yet, social excursions often require people to do the very things that are problematic for this population.  Mobility problems, unpredictible symptoms, extreme fatigue, and "brain fog" (or reduced ability to think logically) are just a few roadblocks.  When added to the plethora of 'extras' most of us carry (medications, comfort aides, water bottles, sweaters, joint-support paraphenalia, etc), it rarely becomes worth the effort.  And to top it off, a lot of chronic illnesses and the methods used to treat them make the patient susceptible to contagious illnesses such as colds, flus, and infections.  It's a wonder we don't all become hermits!

But, without these social connections, we are left very vulnerable in every way.  Ill or not, we must have information, access to resources, and support.  We all generally find a way to get to the doctor or pharmacy and meet our physical needs, but for years we simply couldn't find a reasonable way to meet our emotional ones.  Which brings us full circle, to the World Wide Web.  Now, we can find each other.  Now, we can join groups and discussion boards that will fit into our schedules instead of disrupting them.  If I can't sleep at midnight but crash out at 2 in the afternoon, I can post something at night and read someone's response the next day without us needing to be present at the same time.  Instead of being subject to the opinions and educational limitations of one doctor I find the energy to see, I can scour the web for more ideas and insight and take an active role in my care.  And even to my own surprise, I can develop REAL relationships with people I've never met (and probably never will).  A woman undergoing chemo in Alabama is now just as important to me as people who live in my town.  Another woman 3,000 miles away was the first to tell me when she found my group in a newsletter (that I don't even receive and would never have seen on my own).  And, I hope, my stories and advice may be positively influencing someone out there who might never have even pursued treatment if they hadn't heard that something could be done, or know that I care when the 'real' people in their lives turned their backs. 

And so, to the many who are trying to unplug, I tip my hat and offer best wishes that they find the peace of mind connectivity may have stolen from them...and I turn, pick up my laptop and BlackBerry, and settle in to enjoy the gifts of being Chronically Connected.


  1. Thanks. I'm glad to know you, too.


  2. Beautiful... and oh so true! While the internet can have drawbacks for some because the online relationships REPLACE "in person" relationships, for the chronically ill, we may have fewer relationships that are "in person" since we aren't out and about so often. While fewer can also mean we have quality friendships, instead of quantity, it's not always that way. Many people are simply very lonely. At this time, the internet is an amazing tool that provides the resources to make REAL friendships as you so eloquently wrote about. Thank you so much for your passion... and finding your purpose! You are one in a million!

  3. Here's raising a glass (of ice water) to that!!! We can't feel so lonely knowing there are many others out there with the same problems. Makes you feels as if you are part of a community, even if you never meet! :o)


I'm excited you're here - and can't wait to read your comment!

* Transparency Note *
If you are commenting as someone affiliated with a professional organization to promote said entity, please identify yourself as such. I'm not opposed to hearing from you or your organization, but must ask that you provide transparency by stating this for my readers and myself. Thank you for your compliance.