Looks Can Be Decieving

Living with an invisible disability isn't easy. Living with any disability can be soul-wrenching. But the invisibly disabled get a special sort of prejudice and disdain from the healthy public that has to be one of the circles of Dante's hell.

Hard enough that we have to go through rounds of doctors to finally ferret out what is wrong with us; only to be accused of doctor shopping. But when we finally are diagnosed, many of us have to give up our dignity, our dreams and a lot of people we considered friends don't stick around too long, either.

Yesterday I had to go to pick up some medication with one of my children. I pulled into the handicapped spot and put up my placard. When I came out I went around to the back of my car and pulled a small box out to place it in the back seat for easier access when I got home. As I was getting back into the driver's seat I noticed a woman standing on the passenger side of my car, looking it up and down... glaring.

"Is there a problem?" I said to her. She continued glaring. "Take a picture it will last longer" I said, not wanting to be too confrontational with my child with me.
She finally looked at me with a scowl... "I am looking for your placard!" she snapped.
"It's right there," and I pointed to the NYState placard hanging from my rearview.
"You look fine to me" she said.
"And you're the disability police?" I said and got in my car closing the door. I wanted to say something else but I decided it would have fallen on deaf ears.

"Mom," my child said, "you have a hard time walking. She's mean."
I told them, "Some people have a hard time since they don't SEE the pain." I got a hug from my child and then put the car in gear and drove home. A few years ago I had one stranger tell me I had no right being a mother, as I was walking with my child, while using my cane in the grocery store.

I used to be very healthy. During the NYC Subway Strike in the summer of 1981 I walked 70 blocks to and 70 blocks from work every day until the strike ended. I had very little pain and joked about how my legs were long and never bothered me. Now I am in pain every day. Lately its been so bad walking brings tears to my eyes and I can often only drive in a 10 mile radius, on a 'good' day, from my home.

Try to have compassion and empathy for the invisibly disabled and teach your friends & children the same.

Privilege and Prejudice: Disabled Parking with an Invisible Illness
By: Lisa Lorden

Much has been written about the difficulties of living with an invisible illness or disability. Well-meaning friends and acquaintances who say, "But you look good," can touch off a sense of isolation and the feeling that no one understands what you're going through.

The word disability is defined in the dictionary as "a disadvantage or deficiency, especially a physical or mental impairment that prevents or restricts normal achievement" or "something that hinders or incapacitates." However, our visually oriented society may not take the time to look beyond appearances.

People tend to believe what they see; and if it can't be seen, it simply doesn't exist.

When our lab tests appear "normal" and people keep telling us we look good, some of us with chronic fatigue immune dysfunction syndrome (CFIDS) or fibromyalgia (FM) may even have doubts about our own illness. These feelings are familiar to many of us who have been sick for a significant period of time. But sometimes having an invisible disability can touch our lives in unimagined ways, triggering new hurts. I'll never forget the day it first happened to me.
It was a clear, sunny day and the weather was glorious. Yet despite the sunshine, I was struggling with excruciating fatigue. I needed to go to the bank and I dragged myself on this one errand, knowing that as soon as I finished, I could return home and lie down. I pulled my car into the parking space closest to the building, between those blue lines that indicate parking for the disabled or handicapped. One of the privileges I have come to count on in coping with my illness is my blue disabled parking permit. When doing an errand or two would be an insurmountable task if not for the ability to park close-by, the blue tag I hang from my rearview mirror allows me to function in ways I otherwise could not.

As I got out of the car, a woman approached me. "I hope you feel good about parking there," she said sarcastically. I was caught off guard, and responded dumbly, "What?" and looked at her, not sure if I had heard her correctly. "I hope you're happy, " she said, "taking a space that's for the handicapped." My heart was beating furiously. "I do have a permit," I stammered. "Well, " she said, disdain all over her face, "you look like you can walk fine to me--you're about as handicapped as I am!"

I was stunned. I stood there mute, horrified, but unable to even defend myself. It wasn't until she walked away that the tears began to roll down my face. I started to think about all the things I could have said -- should have said -- how I might have made her understand. Instead, I felt ashamed -- that my disability is not apparent -- and I felt crushed by this woman's cruel judgment of me when she had no idea how much I have suffered.

I now know that this happens to lots of people. I've heard many stories like mine about people with invisible disabilities who are accosted by "do-gooders" intent on protecting the rights of those for whom the parking spaces are reserved. In an essay in the Los Angeles Times, Connie Kennemer -- who suffers from Multiple Sclerosis (MS) and had a similar confrontation--writes,

"I feel violated by a self-righteous and judgmental society that narrowly defines disability. I am not in a wheel chair. My handicap is hidden. Do these facts eliminate the possibility that I share the same limitations as those who are visibly disabled?"

For many with fibromyalgia (FM) or other invisible illnesses, that blue permit allows us to live our lives more "normally" by helping us complete seemingly easy tasks -- like grocery shopping or a stop at the dry cleaners -- that would otherwise be exhausting, extremely painful, or completely overwhelming. Says one writer who calls herself the Invisible Disabilities Advocate: "These spaces do not make life easy, they make it possible."
Errands like these may seem trivial to some, but they are precious and essential to those of us who struggle with illness and disability on a daily basis. Writes Kennemer,

"I want to shout at the world, 'give me a break! I'll give you this handy placard if you'll take my disease! Deal?'"

While it may not be possible to make sure everyone is knowledgeable about invisible disabilities, we can take care of ourselves. Many people who sorely need a disabled parking permit hesitate to get one for fear of confronting the ignorant reactions of others. Others who do have permits hesitate to use the very privilege that was designed to assist them. Why do we feel ashamed? Wouldn't we readily give up this privilege if it meant having the health and energy we used to have? We must stop feeling guilty about our limitations, in order to do what we need to do to live the fullest lives we possibly can. If you feel you need a disabled parking permit, your doctor can usually help you with this; or contact the vehicle licensing agency in your state to find out how to apply.
In all likelihood, I'll continue to wrestle with others' perceptions of my apparent "good health." But the next time someone confronts me and my blue placard, I'll be prepared. On one online message board, a member posted a letter to Ann Landers written by someone who'd had back and knee surgeries, but looked to be healthy.

One day when she used her parking placard in a handicapped space, a man approached her and said, "You certainly don't look handicapped to me. You should not be parking in that space." She replied, "And you, sir, look intelligent, but I guess looks can be deceiving."

SOURCE