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I am One of the Millions

“Be kind to others. For everyone is carrying some kind of burden, you know nothing about.”

A visual society, we too often take to heart the adage, “Seeing is believing,” and sometimes make judgments not represented by facts. But, you can’t always believe what you see.

Case in Point
On a recent trip to our local big box store, I found few vacant parking spaces available and ended up parking at the far end of the lot. A couple walked ahead of me. As we made our way to the store, we slowed to allow a woman to pull into one of the handicap parking spaces.

When the woman exited her car without assistance, I was struck by the couple’s reaction. Their indignation was almost palpable and the expressions on their faces, plain to read. How dare she, an able-bodied woman use a space designated for those with REAL disabilities. With heads shaking in disapproval, the couple glared and mumbled loud enough for her to hear. “You should be ashamed. What’s wrong, too lazy to walk?”

The woman’s face flushed. She turned away, sat back down in her car, and waited for them to pass. I could tell this wasn’t the first time this woman had experienced such behavior. Although the appropriate handicap placard hung from her mirror, this attractive woman bore no visible signs of disability, and therein lies the rub.

It’s possible she was taking advantage of a family members handicap placard. On the other hand, she may be one of the millions in this country who suffer from an invisible disability. And by that, I’m not implying it’s in her head. She didn’t make it up; she isn’t pretending, and she isn’t a hypochondriac.

Invisible disabilities are indiscernible to others. People with hearing or vision loss, chronic back pain and mobility issues are the tip of the iceberg. Chronic illnesses, cognitive disorders, congestive heart failure, lung disease, rheumatoid arthritis, lupus, or other autoimmune diseases are additional examples. [1]

The Americans with Disabilities Act of 1990 (ADA) defines disability, “as a person who has a physical or mental impairment that substantially limits one or more major life activities; has a record of such impairment; or regarded as having such impairment.” [2]

Those who make snap judgments, as did this couple are ignorant of the facts. In the United States, 96% of people with chronic medical conditions will show no outward signs of their illness, and 10% experience symptoms considered to be disabling. [3] Yet, cars have been vandalized and people physically accosted for parking in a handicap space and all because they didn’t look disabled. [4]

The biggest reasons people react negatively to those with invisible disabilities is due to society’s expectations. Our culture was built on values of hard work, organization, and contribution to the community. We are also a compassionate people, yet individuals who can’t work or contribute are stigmatized. [5]

I don’t deny abuses of handicap placards occur; it does. In fact, abuse has become so rampant states enacted new laws. In my home state of South Carolina, a new law went into effect January of 2010 requiring every placard to have a picture of the person issued the card. In addition, all tags and placards for the disabled now have certificates to prove their authenticity. “Violations of this law are a misdemeanor punishable by fines of one to two hundred dollars or imprisoned for more than thirty days, for each offense.” [6]

The truth is; the impact of these diseases is life altering leaving many unable to work, socialize, or maintain normal day-to-day activities. The same activities taken for granted by most people. [7] But, for the those suffering from an invisible disease, the act of walking across a parking lot can leave them breathless, in pain, subjected to prejudice, unwarranted judgments and verbal or physical assaults.

A run to the local big box store for most people is just another errand, but for those with invisible disabilities it becomes an errand in emotional pain and humiliation. I should know; I am one of the disabled millions in this country. I am Sjogren’s.

Sjogren’s is an autoimmune disease in which white blood cells attack moisture-producing glands causing severe dry eyes, mouth, and dental problems. It may also cause complications to the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients with Sjogren’s experience extreme fatigue, joint pain and have a higher risk of developing lymphoma. [8]

Pain is my constant companion. Sleep eludes me and the fatigue can be so debilitating, the simple task of washing my hair becomes too taxing. Some days I don’t have the energy to move, but I force myself because I’m too afraid to stop. Allergic to most pain medications, I have no choice, but to suck it up and deal with the pain of my disease.

In the last two years, I’ve suffered hearing loss, seizures, blood clots, lung lesions, and pacemaker surgery. But, unless you’re a close family member or friend, you wouldn’t know this.

Welcome to my world.

When the more overt symptoms can’t be disguised, I stay at home. A proud, independent, and vain woman (I’ll admit it), I refuse to give in to this disease or the pain. When you see me out, you’ll find me dressed to the hilt, in full make-up, smiling, and eager to listen to your latest adventures or complaints, in spite of my pain.

I don’t primp for two hours each morning to impress the outside world; I do it for me. How I present myself is the only thing I can control these days, and even that has limitations.

Those of us who live with these invisible diseases would give anything to be independent, free of disease, without pain, or able to walk from the rear of the parking lot. We hate the looks of doubt, insults, real or implied and detest having to explain ourselves, especially to strangers.

In remission now, I no longer require a disability placard, but when the time comes again and it will, I will offer no apology. My disease, like millions, is not visible to you, and I refuse to put on a display of symptoms to make you more comfortable.

May I suggest, the next time you see someone park in a handicap space; please forgo the judgment and petty insults, regardless of how they look. They as I, would gladly trade our disease, pain, limitations, and even our convenient parking permit for your health, any day of the week.

Interested anyone? I didn’t think so.

[1] “Invisible Disabilities Information: What are Invisible Disabilities?” Disabled World. Retrieved 13 July 2012.
[3]  2002 US Census Bureau
[6] ]

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