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

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