Tuesday, August 6, 2013

Invisible Disease

photo credit - Tracy Andreassen
10 Years ago I had a traumatic fall.  I was left with a paralyzed leg and using a cane for walking.  Even when the nerves regenerated I was left with a foot drop which leads to frequent stumbling.  I am a fall risk...trust me, no one hires me because of that title.  I still use a cane for stability...I use it hoping that IF I stumble, it might help me catch my balance before I make an inglorious splat in  "action aisleway".  I have several canes...some for stability, some actual weight bearing.  I change canes like purses.  My cane however is an advertisement...similar to that of a chemo cap....something is wrong with this person.  And MOST people are compassionate and assist me with doors, lifting and general thoughtfulness.

I have other diseases as well...diabetes.  Sometimes in public, my sugar drops and I feel slightly confused but VERY wobbly.  Before I started carrying glucose with me, I would fumble on my hurried way to obtain something to eat...to bring up my  blood sugar.  Though I wear an medical ID bracelet identifying me as a diabetic it is really not much of an advertisement.  So as I interact with the general public, they do not see me as a diabetic in need of sugar.  They see me as a slightly goofy, clumsy overweight woman indulging in a sugar binge.  Diabetes doesn't carry it's own advertisement.

I have a young friend that broke his leg.  He proudly displayed his lime green cast as people asked for details, clucking their sympathy.  They patted him, helped him through the potluck line, and generally waited on him.. No one expected him to participate in given activities after all...he had a broken leg.  People were compassionate.  His cast advertised something was wrong

I have a loved one with an auto immune disease.  His disease attacks his nerves directly.  His own antibodies attack his nerves and attempt to destroy the protective covering around the nerves (myelin sheath).  When the protective covering is thin or gone, the nerve ceases to work.  Once he was diagnosed, he was given a treatment which requires a monthly infusion of a special medication that prevents his antibodies from attacking the nerves.  But the effect of the medication wears off before then next infusion begins.  Of course it effects his right arm and he happens to be right handed.  So his handwriting gets sloppier.  He ability to hold things securely lessens.  Before he started treatments, buttons and zippers were difficult to operate.  This is a man who doesn't adapt well.  To HIM, adapting means giving into the process or disease.  So he fought every assistant device created.  He was totally humiliated in a buffet restaurant when on the way to the table, he dropped his plate.  Servers rushed to clean up.  He felt the eyes of the whole restaurant upon him.  In truth, people looked but when back to their own dinner.  HE felt they looked and judged..."fat man got too much food to carry."  He finished a salad and left...never really eating because he embarrassed and convinced everyone was watching him eat.  Neurological disease doesn't carry an advertisement.

This last spring I was diagnosed with psoriatic arthritis.  I had such a painful winter.  I was barely able to move.  I lived on the fringes of everyone else's lives.  My laptop was my window out of misery.  Getting out of the house required more energy and endurance than I had.  For me, life had hit an uncomfortable halt.  People did not understand my limitations.   I had someone ask me, "isn't that just an arthritis?"   There was no advertisement for what I felt.

Many people have no concept of what this disease is...or other arthritis type disease. They don't understand fibromyalgia, CRPS, chronic pain, chronic fatigue. the dozens of other invisible diseases or plain diagnosed disease.  They don't know how bad you may feel.

You see their judgement in their eyes when they don't speak it.  Often they speak condemnation with unwanted advice.   "Maybe you should just MAKE yourself try it and it will get easier".  "Well I know, sitting at home doing nothing can't be helping you."  "Have you tried blueberries...I read this article on facebook..."  And hundreds of comments like it.  We hear the comments like blame...."you're not trying.  It's all in your head.  You are just lazy.  You were never very social anyway.  You're a hypochondriac."  They think it's helpful advice but it hurts and defeats and attacks.

Invisible disease carries no cane.  It has no chemo cap.  No emblems, therapy pets, or special support systems.  There's no special license plate to put on the car stating you need special consideration.

Yet I'm struck how we might enjoy our world more if everyone extends courtesy to another as if everyone had their own invisible disease.  My Mister recently told me he was making an effort to be more kind.  If we all stopped obsessing in our lives and miseries and considered for a second the person you are interacting with has their own invisible difficulty; we might all be more kind.

1 comment:

  1. I feel for you sister! I have fibromyalgia and while I function quite well with it I know others who do not fair as well. My daughter has PCOS as well and so many people don't have a clue what she deals with(difficulty losing weight, difficulty getting pregnant...though God has blessed us with our beautiful first grandchild!...and she could not breast feed as she had dreamed of doing, well, not for long as the pcos affected her milk production). I have seen her suffer the stupidity of judgemental remarks of other young moms who have no clue.
    Thanks so much for speaking to this subject!!
    Gay @ Captive Heart