When Police Don’t See Your Invisible Condition

In 2004 I was involved in a terrible auto accident caused by a negligent driver. This resulted in my living with constant severe pain throughout my body primarily caused by a Mild Traumatic Brain Injury and the herniation /rupture of 8 discs in my spine. As a result of this I now need tinted windows as a medical necessity since the sun is too bright and causes me to have severe migraines.

In May 2009 I was pulled over by a local police officer. I have with me a Letter of Medical Necessity, a visible disability placard, and a mobility scooter in my vehicle. The policeman’s first question after telling me I had illegal window tinting, after I mentioned it being a medical necessity, was “what is wrong with you?”

This was rather very hurtful and shocking, so added more stress from being pulled over in McDonalds for no apparent reason. The policeman treated me as if I was guilty of breaking the law which I was not according to the Michigan Vehicle code. I kept my cool as I sat there in severe pain for 30 minutes until I was ticketed and he let me go. In the end I was upset and wept for the injustice that had just occurred since I am a very safe driver and actually drive very little due to chronic pain. I get severe migraines caused by even just a little sunlight on a cloudy day. The officer told me that everyone has a Letter of Medical Necessity and that doctors hand them out like candy here in MI.

The Michigan Vehicle Code Act 300 of 1949, 257.709 –which includes rules for vehicle window tinting– is in need of revision so that disabled people, such as me, are not pulled over and ticketed by police unjustly and needlessly. States such as Ohio, Texas, and Washington require a sticker be placed on one or more windows of a vehicle with legal tinting. I believe that Michigan needs this incorporated into the vehicle code. House Bill 4343 supports adding this exterior identification for vehicles with legal tinted windows and this amendment also protects my wife if she is driving me in my personal tinted window vehicle when I cannot drive myself.

I now await a letter of approval from the Driver Assessment and Appeal Division (517) 335-7051 which I have been directed to take to my local Secretary of State to have a tinted window restriction placed on my Driver’s License. Please help protect those of us that legitimately need tinted windows to drive safely.

I think what I’ve learned the most through this tinted window ticket by the police is that even law enforcement cannot see invisible illness; I do not have to accept their false assumptions or disbelief.

Now I have to go to court and fight the ticket but I have an attorney if I need him. Being in my mid-forties I know that people may assume I am fine even though I suffer from chronic pain due to a host of conditions attributed to an auto accident that was not my fault. Being a systems thinker with an eye towards continuous improvement I realized that vehicles with legally tinted windows should have some way to identify them to law enforcement.

Tinted windows seem to be all the rage here in MI and I see several cars with them when I drive. A proactive approach would be to certify cars first with a sticker in order to get window tinting applied. I checked online to see what other states require and I discovered that Ohio, Washington, and Texas all provide a sticker to identify legal window tinting. This protects the law enforcement and people like me with medical conditions. I then checked online with the Michigan House and Senate for laws related to window tinting and I discovered House Bill 4343! This bill was introduced in 02/09 and if approved will require a sticker to identify legally tinted vehicles and it will protect my wife if she is driving me or driving my car alone to get gas, etc.

I have contacted several organizations and government representatives about this matter. I have received many positive responses including my State Representative Marty Knollenberg, the Speaker of the House Andy Dillon, Michael F. Dabbs President of the Brain Injury Association of MI, the American Chronic Pain Association, and Leah Vassas Member Services Coordinator of the National Pain Foundation.

I hope that my efforts will make Michigan a safer place for all of us to live in especially when we hurt. This unpleasant experience is not over yet so more pain is to come but I hope in the end to help others avoid this type of very unpleasant experience.

7/2/09 Update: I went before a magistrate at court today and my case was dismissed so I am very glad and thankful to God since this has been a terribly stressful event!

David W. Stickley

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Let’s Blog for Our Cause

Whether you have a blog or not, you can help us blog for Invisible Illness Week. Here are ways we need you and your stories!

If you don’t have a blog:

• You are still welcome to submit a “blog post” and be a “guest blogger” here at the Invisible Illness Week web site. We recommend reading some of our past blogger’s posts for ideas, but we are happy to consider anything of interest to those with invisible illness. We’d love to hear your reflections, ideas, stories, and more.

If you do have a blog:

• Submit a blog post you wrote in the past or just yesterday as a guest blogger here on our web site.
• Be a host for our founder’s Blog Tour (More information coming soon but you can sign up here now if you want. Details will be emailed to you). Lisa will have different interviews in text format that you commit to posting on a certain day. Do you know friends who blog who may be interested? We’d love to spread the word about II Week all through the blogosphere of many illnesses, from cancer to autism, migraines to arthritis, celiac disease to other rare disease.
• Submit your blog post in July for an August edition of Grand Rounds, the biggest (and first) medical blog carnival online. (Read more about this here.)
• Join Bloggers Unite to commit to blogging on your own blog about invisible illness.
• Don’t forget that on our front page we have a button, widgets, all kinds of things you can add to your blog if you want including our 2009 Invisible Illness Week logo.

Thank you for your help! We really couldn’t do it without you!

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• Patients for a Moment: A New Blog Carnival Hits the Scene! (emergiblog.com)
• Grand Rounds: The Diversity Edition (digitaldoorway.blogspot.com)

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“You Don’t Look Sick” Can Sting

Each day I receive a list of people who have blogged about their invisible illnesses and I’m still surprised at the number of people who hear the words “You don’t look sick” and write about how it feels to hear this well-meaning, but still stinging words.

Here are some people who, like you, “don’t look sick.”

You ask me if I’m sick?! Where do you get that from? I’m not sick. I have never been sick. And I will never be sick. Not in the way you ment it. All that happened, is that I have got an issue with my balance, a balance disorder. Or no, not really. I have got no issues whatsoever with whatsoever. Actually balance has got an issue with me.  JudyDonnelly.com

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How YOU Can Make a Difference

There are lots of ways to get involved in National Invisible Chronic Illness Awareness Week. In fact, just spreading the word that such a week exists seems to be therapeutic to some of us who are tired of hearing, “Are you still sick?”

We are always updating our web site under the category What to Do – How to Help, but if you are looking for a fast list, here are some things you can do that will all help us a lot! Most have links with more details if it’s not self-explanatory.

Bloggers or Writers

• Write a blog post for our web site as a guest blogger. It can be something fresh or something you have posted before.
• Submit a blog post you wrote in the past or just yesterday as a guest blogger here on our web site.
• Join Bloggers Unite to commit to blogging on your own blog about invisible illness.
• Don’t forget that on our front page we have a button, widgets, all kinds of things you can add to your blog.

Do You Twitter?

• Follow us @invisibleillwk
• Retweet our tweets to let more people know about II Week
• Use the hashtag #iiwk10 when tweeting
• Tweet out our 20 Things to Say to a Chronically Ill Person and 20 Things to NOT Say to a Chronically Ill Person
  
• Twitter 25 facts about illness in 25 days
  
• Get a Twibbon for your profile photo

Are You on Facebook?

• Join our cause & tell your friends and family The easy address to rememberis http://www.InvisibleIllnessOnFacebook.com
• Whatever you see on our web site that you like… scroll down to the share button and share it on Facebook. It’s easy and helps more than practically anything else you can do to help!
• Ask your friends to join the cause.
• Give a donation to the cause (We are aiming for $1900 to help us cover costs.)

Pray!

• We have a prayer group jut for the week – join us if you’d like.

Do You Have a Web Site?

• How to Put II Week Blog on Your Site
• Add our button to your site!

Buy Some Goodies to Help us Financially and Also Spread the Word

• We have some great II Week items to help you share about your passion for the cause.

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GUEST BLOGGER: Can People with Invisible Illness Park in the Blue Spots Without Others Seeing RED?

This is an Op-Ed piece I wrote last year, which caused quite a stir at one particular web site. I’d love to hear your feedback too!

 

 

 

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“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 [Sept 8-14, 2008], 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.

 

Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week, www.invisibleillness.com, and author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” She is the founder of Rest Ministries which has served the chronically ill with spiritual support for ten years.

 

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SURVEY: But You Look So Good!… What do you say?

When someone tells you that you look great, how do you respond? How does it feel? For some odd reason, though we don’t want to be told we “look as bad as we feel” sometimes it can seem like our pain isn’t being acknowledged. It’s hard when it feels like no one understands how much your life has been impacted by this illness.

We sent out a survey last year and we have over 1000 respondents… but we still want YOUR input, because we are going to sned it out as a new press release in the next couple of weeks.

Tell us what you say when someone says, “You look so good!”

AND… one of you will be chosen to win a copy of Sherri Connell’s book, “You Look So Good!” [[link]]

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