Sunday, July 29, 2012

The Invisible Illness

One of the most emotionally distressing components of fibromyalgia syndrome is the feeling of being invisible to those around us.  It seems as though no one "gets it".  I have friends that seem to listen intently as I tell them about my pain and the myriad of other symptoms that make up this complex syndrome.  I can see their impatience as their eyes glaze over and they change the subject.  I realize that I have just used what precious little energy I have on an seemingly impossible task.  I feel defeated, alone and frustrated . . . and angry too.  I think about my strategy in attempting to get my message across to just one person, but my strategies have been exhausted and I want to stand on the rooftops with a megaphone like a curbside preacher and try one more time.  Doesn't anyone understand?

Let me tell you about my daily encounters with Freddie.  I have a small garden lizard that comes out to sun himself on the couryard wall.  I named him Freddie since our daily talks have turned into a good friendship.  He always looks as me suspiciously as I discuss the events of the day with him.  While I talk he keeps a keen eye on me while simultaneously watching for a meal in the form of an unsuspecting insect.  He also watches carefully for the Roadrunner that suddenly appears out of nowhere and threatens to devour him in a single bite.  As I talk with Freddie he seems to be a good listener as he gazes into my face.  But as I watch him closer I can see his indifference about my personal concerns.  Can't you just see the indifference in his expression?  I can tell he is more interested in his own daily plight and he is quite preoccupied with
his own good time and his own survival.  He actually looks quite bored.  I suddenly realize I have been insensitive; Freddie has not had breakfast yet and the Roadrunner snatched up his best friend only yesterday.  His own personal drama and fight for survival have preempted my concerns, after all I have already had breakfast and I caught him at a bad time.  So I stuff my feelings back into their usual place of residence and smile.  I tell Freddie that I'm so sorry he hasn't had a good meal yet today, give him a few ideas where he might find breakfast, and offer my condolences about his good friend.  I call out to him as I walk away, "I'll be seeing you tomorrow my friend!" and he scurries along to get on with his day.

There are so many invisible illnesses and personal dramas going on around us each day.  How can I tell who those people are?  Are they the drivers that cut me off as if their day is more important than mine?  Or are they the people who look so grumpy and forget to say "thank you" for a small gesture of kindness?  And then I see a friend walking with a cane, happy and smiling . . . I learn he has Parkinsons and I grieve for just a few moments for him.  How could I be so insensitive that I never knew he was sick??!  If peoples' difficulties are invisible and so cleverly disguised how will I ever recognize the faces of grief, pain, illness and personal loss?

And then an epiphany!  I can't always see it, because not everyone carries a cane declaring their personal traumas.  The reality is everyone carries a burden and I can only see it if I listen and then it may be difficult for me to "get it", because I'm in pain and so exhausted that I hardly have the energy left to hear.  On top of that I can't really walk in their shoes nor they in mine.  I must conjure up my own picture of their life drama by using an inadequate imagination lacking the experience and frame of reference that would provide the data I need to truly understand.  So I smile and work hard to be gentle and kind to myself and others, because we are all damaged.  I have friends with fibromyalgia, but they don't truly "get it" either, because my life path and its challenges are uniquely my own.  Every human encounter provides a piecce of what I need to thrive and I need many human encounters to fill that enormous bucket I carry around with me.  But bit by bit that bucket is fuller.  It is up to me to recognize what belongs in that bucket, to be keenly aware of the precious tidbits people throw my way and to thoughtfully and carefully discard the rest.  After all we are only human and that is very good!

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