Invisible Sufferers – Unseen Disabilities

I have been struggling with a dilemma for some time – get a handicap pass or not.  I am so worried about how I will be perceived when I get out of my car – not the handicapped part – but the part where I don’t look handicapped.  Often when I begin my shopping trips, I feel relatively fine.  When I walk into the grocery store, I usually don’t need my cane and so I leave it in my car.  However by the time I am finished, I can be very fatigued and the pain and stiffness can affect my walking.  Unless it has been a terribly stressful day out, I can still manage without my cane, just more slowly.

I am fortunate to have a husband who supports me and my restricted lifestyle, both emotionally and financially.  I also have two amazing kids, who seldom let me go out-and-about without one of them as co-pilot.  But my husband is military and sometimes must leave home, and my kids are nearing college age.  The reality I won’t always have their help and buffer is settling in and forcing me to deal with my fibromyalgia in a new way.

Many times when I have been overextending myself with errands, I resort to using the handicapped restroom facilities.  I feel self-conscious about doing so because I don’t look handicapped.  I worry about the person who might challenge me, setting off an anxiety attack.  Anxiety is a major trigger for my fibromyalgia pain which in turn triggers crippling fatigue. While I have learned to keep the anxiety at bay under normal circumstances, confrontations are very difficult for me and will usually put an end to my plans for the day.

I know I am not alone in my worry over perception and subsequent confrontations.  Sufferers of many types of disabilities, suffer invisibly. Sadly, it seems the stronger you are and the more you challenge yourself to live a normal life, the more you are disbelieved.  “You look normal,” becomes a burden not a relief to hear, because it always seems tainted with disbelief and accusation.

Now I am planning a trip to DC with my family to see all the museums.  I know I will need to rent a wheelchair if I am going to make it through the trip.  Luckily wheelchairs are available for rent at most public locations now.  It won’t be the first time I will resort to such measures; I have utilized the wheelchairs available at our military shopping facility.  However, on the base where people are more aware of the unseen injuries of war, I feel less self-conscious.

Over the years, I have learned that talking about my worries and my experiences helps me to both feel better and helps others feel informed.  So today I have chosen to cry, and write, and hope that by posting this I will feel more confident in my decision to get a handicap pass for my car.  And maybe if a concerned citizen decides to challenge me or another invisible sufferer in a parking lot someday, one of you readers will be there to come to our defense.

 

* The following is a painfully accurate account of another Invisible Sufferer  Privilege and Prejudice: Disabled Parking with an Invisible Illness

Becoming the Director of Our Own Play

Worries, sorrows and pains are frequent characters in life’s ever unfolding drama, often making our days feel more like a tragedy rather than a romance or comedy.  They stand in our way, trip us up or block our view.  They discourage us and prevent us from searching out the light, laughter and love that is just beyond the gloom. They encourage us to follow their lead or worse, simply be the audience and not the director of our own play.

These actors of drama and tragedy are essential to our play of life, but they should not block us from the other actors essential for a balanced performance.  Pushing past these dramatic characters requires effort.   Just beyond their shoulders, we can find opportunities for the joy they are trying to hide from us.  Sometimes it takes work to pull back the curtains of trouble and reveal, through service, the joy and laughter we seek.

A great man taught this principle two millennia ago.  Whether you believe him to be a savior or simply a prophet, he taught that the trials of life could be lessened by learning of him, of the things he did, and the promises he made.  His mission was one of service and his lessons taught compassion over worldliness.  Our worries, sorrows and pains, or in other words, our burdens would be made light if we emulated him and served our fellow man.  He did not promise they would be removed, just that they would be made more bearable.

He said, “Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light.”*

*Matthew 11:28-30, Bible, King James Version

The Cowardly Lion

The Happy LionIt has been quite a while since I thought about the Wizard of Oz. Truthfully I was never a huge fan of the movie. The witches and flying monkeys always bothered me.  I remember watching it once in the 80’s on TV and being perplexed when the scary monkeys didn’t appear.  The channel had cut them out for some unexplained reason, but even without the monkey scenes, I still wasn’t a fan.  By the time I reached adulthood, I had developed a dislike for the good witch as well as the bad one, but for entirely different reasons.

I thought Dorothy was childish, loved everything about Toto, felt sorry for the Tin Man, laughed at the Scarecrow, and wanted to pat the Cowardly Lion on the head.  I understood the point of the movie, but found it to be nauseatingly sweet.  Now, that I think about it more – I really didn’t like the movie.

Today however, I gained a greater appreciation for one of the characters.  I began to ponder the Cowardly Lion.  As long as he stayed in his dark and scary forest, he thought himself a coward.  He could not see the courage inside of himself; the courage it takes to live in a scary world and not run away.

Sadly, his definition of courage was based on the acts of thrill seekers and desperate men.  He thought that by facing danger, suffering hardship and journeying to some far off land, he would become brave and thereby receive the rewards given to brave men.   His journey to OZ had not been necessary, and even after leaving his comfort zone and placing himself in danger, he struggled to recognize his own natural courage. In the end, the Cowardly Lion had to be told of how he had always possessed the thing which he desired.  Even through the journey, danger and challenge, he had not recognized his own courageousness nature.

Real courage is often overlooked and undervalued.  The courage to like oneself, to make good choices, and to be your own cheerleader is too often called pride and therefore underdeveloped and under-recognized.  How many people, especially youth, seek challenge and danger just so they can receive a reward or praise?  Just so they can fit in with a crowd?

Today the Cowardly Lion became the focus of a mother-son discussion, and while the Wizard of Oz will never be a favorite movie, the Lion will hold a tender place in my heart.