Clearly You Are Not Disabled

This is a reprint from awhile back. I read another case of this happening but the gal took it as a compliment and I thought it was lovely. I put a link to her article at the bottom. Still though, it's important to me for folks to be aware of the huge effort as it IS easy to fall into this trap because of how "we" (folks who have invisible illness) look and how some of us do so stinkin' well at pulling it together and lookin' good !!  It really is a show....but it's for everyone's good including our own!   

YOU ARE CLEARLY NOT DISABLED SHAME ON YOU

from an article here 

Please read this post as written with a tone not of anger but of sharing. I read the above article and it touched me because I am handicapped and I have "looked" handicapped but right now do not.

I want the reader to kindly think. Please put yourself in the shoes of someone who has one of these diseases. That someone is so unkind or maybe has never considered how many different diseases do not show on the outside is understandable but still amazing to me.
Can you SEE......

Cancer?

Arthritis ?
Juvenile Arthritis?
HLA-B27+ Spondylarthropathy?

Kidney Disease?

Congenital Heart Disease?

Epilepsy (not all seizures show)?

Ehlers-Danlos Syndrome?

Marfans Syndrome?

Pseudo-Tumor Cerebri?

Chiari Malformation?

Cranio-Cervical Instability?
Mastocytosis?

Lupus?

Mitochondrial Disease?
Gastroparesis (with a feeding tube)?

3 Beta-Keto-Thiolase Deficiency?

Dysautonomia?

Tethered Spinal Cord?

Prosthetic limbs?

I could go on and on and on with literally hundreds of diseases you CANNOT SEE but make life very difficult, many ending in death. Most readers would not want to know how life would be to live intimately with the above diseases. We live with almost all of them at our house.

I do realize there are those who abuse the system. However, the vast majority of those who obtain handicap privileges do so legally. When you see someone who "looks fine" get out of a vehicle with a handicap placard or plate and go into a store, it may mean they are having a good day. We have to stay home when we are not doing well so it stands to reason you will not see us or them that way.  It may mean their meds are working that day or week. It may mean the surgery they had has worked and they are recovering and are so thankful to finally be out of their homes and going somewhere....ANYWHERE. It's impossible to know what medical situation they are in.

Another factor that I, my children and many of the folks with chronic disease work really, really hard at is.....

 Looking and acting normal when we are not.

For me it may be for the short time when I leave my home to shop or when I have guests. It may be when I go for a BBQ at someone's home or a birthday party. Whatever it is......

I desperately want to look like you 
I want to socialize like you
I don't want to look sick
I don't want to act sick
 I don't want to be sick

 Being sick I have no control over and have accepted as a gift from God and I do not resent it or pout about it or make others miserable because of it. But I DO feel sad when I get looks as I get out of my car with my handicap placard and I don't "look" handicapped (right now). I know what folks are thinking and I have to overcome the thoughts that I don't "deserve" to have that space.

I'm not trying to be on a soapbox. I am really trying to tell you that we are a family that appears perfectly normal on the outside most of the time. We have many rare debilitating, progressive, incurable diseases that cause pain and disability. We live in hospitals, doctor's offices, labs, pharmacies and fly across country for care in several states. We are in studies all over the U.S. We have been in the New England Journal of Medicine and drugs are being developed that may help your family because of that study. We are weird enough that the study was on our family only! It was on the front of the Wall Street Journal and on every science journal online. We are three headed turtles out of nuclear waste dump at this point and we do not complain, we laugh...a lot.

When our twins both had brain/spine surgeries in the winter and had to wear cervical collars so their "disabilities" were obvious to the people who always stare when we would park I didn't have to think about it. But when they thankfully got to take them off last month my radar was back and I was instantly aware of the looks again. I know, I know it shouldn't matter. But it does. I am a rule follower and I do not want people to think I'm taking advantage. But for myself, 5 brain surgeries, a million diseases, a  stroke, seizures, a feeding tube that follows me everywhere (but is fairly invisible) and a bunch of other garbage later, don't even say to my husband I don't deserve to park there.....

When I was in a wheelchair it wasn't an issue. Now that I am so blessed to be out of that thing, it's now an issue. Geez.

Please allow us to park a bit closer to make our lives a little easier. Please allow anyone you see that privilege because you just don't know what they suffer. There are so many diseases that just don't show and so many sufferers that carry their diseases so well that suffer at home where you don't see because they want to look just like you.

Maybe, next time the note could say....

~Blessings~
Lisa

The lovely gal who wrote that piece about the note pictured at the beginning has a great blog
A Special Needs Mom

Here is another great post by a gal I was impressed by
A Note on Her Windshield, But She Took it as a Compliment