Invisible Illness

By Lisa Copen
"Do you know the fine for using someone else's handicapped parking permit is $300?" "That parking spot is saved for the disabled! You should be ashamed of yourself!" Nearly everyone with an invisible illness has been told, "You don't look disabled to me!" One of my friends replied, "Well, you don't look stupid to me." I just bite my lip to try to prevent the tears from forming, broken-hearted that I appear to be deceptive, when I would do anything to give back this parking perk that I use on a rare occasion.

As I circle the parking lot a fourth time on this day I hope for a spot to open up within two-hundred yards of the store, but there is nothing remotely close at this bustling superstore where I need to buy my prescriptions and milk for my toddler. My rheumatoid arthritis is flaring badly, causing extra fluid in my knees to dislocate pieces of loose bones. Every step is painful and unpredictable.

Finally I sigh in resignation and pull into the farthest "blue parking spot." I reach for the placard-the one that has a bold white symbol of a wheelchair-and no, I don't have a wheelchair-yet. So after fifteen years of having this "privilege" at my disposal I still warily scan the area before reluctantly dangling the placard from the rear view mirror. Is there anyone watching, wondering, or waiting, ready to confront me.

I've had scathing notes left on my windshield and many people, empowered by television exposés, have approached me with their opinions. Judgmental expressions and whispers sting just as much. My husband and I adopted a baby and when I would get my child of the car I would avoid eye contact with onlookers because I could hear their whispers of, "She's not disabled! Or-if she is-she has no right to have a child!"

Nearly 1 in 2 Americans (133 million) live with a chronic illness. It could be diabetes, cancer, cystic fibrosis, fibromyalgia or even chronic back pain. Many illnesses make walking long distances impossible because of limited lung capacity, physical pain, or unpredictable numbness in the legs. According to statistics provided by the U.S. Census Bureau, about 96% of these illnesses are invisible. There is no sign of the illness existing, nor the use of an assistive device like a cane or a wheelchair.

I began National Invisible Chronic Illness Awareness Week in 2002, (which is held this year every year in September,) after witnessing thousands of people who had frustrations, fears, loneliness, and bitterness, about feeling invalidated. One's illness, age, diagnosis, or level of disease degeneration, doesn't change the emotional pain

Strangers and loved ones alike doubt the severity of our illness or even the diagnosis. We've heard, "You look so good! You must be feeling better." But we don't feel better. We just bought some fake tan in a bottle and pasted on a smile.

National Invisible Chronic Illness Awareness Week is a time to acknowledge that invisible illness is more prevalent than we'd imagine and everyone-both those who are healthy and ill-can make a difference by encouraging someone with an invisible illness, rather than tearing someone down.

Are those parking spots painted blue because they give so many people the blues? That small area of square footage is a breeding ground for many frustrations as we are forced to defend our illness and character to total strangers. I'd gladly trade in my placard indefinitely for just a week of having my old body back when I could run, sit on the floor, or even hold a fork without tendons popping out of place.

I anticipate the day when a nationally designated system is formed. Texas law states that blue placards are for those who use assistive devices; red permits are for people with a "condition that impairs mobility." In other states, red symbolizes six months of disability and blue is permanent. It's confusing! And for one with invisible illness, the wheelchair symbol discredits both our physical pain and-in the eyes of others-our reputation. Until then, we rely on Invisible Illness Week bumper stickers.

The next time you see a healthy looking man loading groceries into his car-parked in the "blue spot"-don't glare. Stop and offer to help him, or just smile nicely, giving him the benefit of the doubt. Seventy percent of suicides have uncontrollable physical pain as a factor. Your smile may save his life. At the least, it will astonish him, perhaps providing him with genuine encouragement he hasn't felt for months.

This article is by Lisa Copen and can be reprinted at no cost, if you leave everything exactly "as is" including this footer. Get a free download of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen when you sign up to receive HopeNotes, Rest Ministries weekly ezine. Also be sure to check out Hope Endures, Rest Ministries weekly radio program every Tues and Thurs and National Invisible Chronic Illness Awareness Week.

Illness Bloggers Join Together to Blog for Invisible Illness Week
By Lisa Copen

Chronic illness statistics are staggering, with nearly 1 in 2 people in the USA living with a chronic condition and, according to U.S. Census Bureau, about 96% of illnesses are invisible. With hundreds of thousands of people on the Internet searching for health information and support, thousands of bloggers now post daily journals about the emotional challenges they live with while facing a daily chronic illness filled with pain.

National Invisible Chronic Illness Awareness Week, held annually in September, is inviting these blogs to have a substantial role in their awareness campaign. For example, part of their outreach includes over thirty days of guest bloggers as well as bloggers across the internet posting about invisible illness matters. For example, if you have an invisible illness-and a legal handicapped parking placard-you've likely faced a few stares and questions if you park in the blue spot since your invisible illness does not require the use of a wheelchair.

Bloggers around the web are joining this awareness effort for Invisible Illness Week, showing support through their own blogs by posting about different issues related to invisible illness. One can even download an "I'm blogging for Invisible Illness Awareness Week" badge to let others know about their commitment to the cause. Bloggers are also publicly thanked each Friday on the Invisible Illness Week blog, gaining extra exposure for their own blog. Bloggers are posting on their own schedule, but the II Week committee is also encouraging them to post specifically on September 8th, creating a large kick off of awareness for the beginning of the week.

Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, "Though we live with thousands of different illnesses, we have more in common than not. For example, illness impacts our families, careers, finances and daily living, to name a few. We can all learn from one another and share during this journey." She adds, "And frankly, people are tired of hearing, 'But you look so good!' and they want others to know that their illness is legitimate despite how well they seem to be holding it all together."

Laurie Edwards is the author of a recently published book called, "Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties." She has blogged about her illness since 2006 and says, "When you are a young adult, people expect you to put in long hours to establish a career, to jump into the dating world, and to build a life for yourself. But they certainly don't expect you to be sick. There's no such thing as 'too young' to be sick! That is just one of the many reasons why Invisible Illness Week is so important!"

If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillnessblog.com . You can also receive updates, participate in surveys, win prizes, and find out more about the telephone workshops at the Invisible Illness Week web site: www.invisibleillness.com .

This article is by Lisa Copen and can be reprinted at no cost, if you leave everything exactly "as is" including this footer. Get a free download of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen when you sign up to receive HopeNotes, Rest Ministries weekly ezine. Also be sure to check out Hope Endures, Rest Ministries weekly radio programevery Tues and Thurs and National Invisible Chronic Illness Awareness Week.