Monday, August 20, 2018

The Frustration and Blessing of Having an Invisible Disability

 The handicapped placard hanging on my rearview mirror is both a source of support and embarrassment for me.   Even the logo shouts to everyone around that I’m faking it.  Living with a disabling invisible illness for more than 30 years has been a challenge like no other.    Not only does the illness itself present limitations and challenges, but few people are able to understand why someone who appears to be healthy needs to hog a parking spot reserved for those who are “really handicapped”.
I was chatting recently with a paraplegic Christian friend over lunch and was sharing  how frustrating living with an unseen disability can be at times.    My friend had to overcome some very difficult challenges,  but thankfully, he was able to complete college and enjoy a good career.   Even so, I still felt awkward talking about my situation while sitting there looking perfectly healthy.  
My illness came on overnight during a time when I was a happy and busy 36 year old mom of three running around like a chicken with my head cut off.    I have ME/CFS aka Chronic Fatigue Syndrome – which is an absolutely LOUSY name that doesn’t begin to describe it.   There’s a link at the top if you want to learn more —Jen Brae's short Ted Talk is perfect.

The morning I woke up with it I couldn’t lift my head off the pillow.   Most of my children’s growing up years flew by while I was confined to bed.   I missed many of  their Christmas concerts, track meets, and didn’t darken the door of the church for over a year, even though we lived in the parsonage, literally a stone’s throw from the church my husband pastored.    Robert was affectionately known as Mr. Mom because he did both his and my job for several years—and never once complained about it.      If there are special rewards in heaven for good husbands I know he’ll get one.   

The illness has waxed and waned over the decades.  Even now there are months  when I rarely go out of the house.   If you ran into me at church or Costco you’d never guess what how unpredictable this illness is.    Some days just walking from one side of the house to the other is a challenge while the next I might be able to clean the house and go shopping.
Disabling invisible illnesses have many causes and are not unique by any stretch. 
“It is estimated that 10% of people in the U.S. have a medical condition which could be considered a type of invisible disability… some struggle just to get through their day at work and some cannot work at all.” 1 
I hope it doesn't sound like I’m whining, because truly, I am not.  The Lord has helped me in ways I could not begin to describe.   Even though it's frustrating to have an illness that others don't understand,  James says,
“Consider it all joy, my brethren, when you encounter various trials,” James 1:2
And trials come in all shapes and sizes.  Everyone suffers with some kind of infirmity  because the whole creation groans under the fall.  And flawed as our bodies are now,  one day the trumpet will sound and Christ will resurrect us and give us a glorious new body.   
And this is why I can rejoice!  
Susannah Spurgeon was no stranger to physical affliction, nor was her husband.
“When the fire of affliction draws songs of praise from us, then indeed we are purified, and our God is glorified….Singing in the fire! Yes! God helping us, if that is the only way to get harmony out of these hard apathetic hearts, let the furnace be heated seven times hotter than before.”2
We can “sing in the fire” because whatever trial God has brought our way,
"This light momentary affliction is preparing for us an eternal weight of glory beyond all comparison.” 2 Corinthians 4:17

2. Singing in the Fire by Faith Cook: Banner of Truth Trust; 1995; pg. 34

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