Monday, September 12, 2011

Invisible Illness Awareness Week

Today begins Invisible Illness Awareness Week.  Those of us with chronic illnesses, 96% of us anyway, have diseases that are invisible.  For example, a person such as myself with Myasthenia Gravis, upon first look, doesn't appear to be any different that others.  It amazes me that some people don't even notice my trach!

I have to cover it when I talk, so I would assume it's seen right away.  But many people will say, "Oh you sound like you have a cold."  And then I just say, "No, it's just my voice from the trach."  And they get all embarrassed. It's not a big deal.  I'd rather have people say something that just stare.

Some of you already know that I had an experience last Monday that really bothered me.  I was trudging through sand--no easy task even if you're 100% healthy when there's a 40 mile an hour headwind!--and had to stop no less than FOUR times in the space of about 30-40 yards.  My MG legs felt like they were going to drop me right there. It was a bit uphill, and as I said, the wind was blowing strongly in my face.

There was a group of late teens, early 20-somethings sitting at the picnic table closest to our van.  They were watching me.  One of them said something, and they were all laughing.  Watching, and laughing. 

Now normally I would have given them the "what for" and lectured them and maybe even cussed once or twice.  At LEAST tell them to grow up.  But I was already tired, emotional, and completely out of breath from the struggle up the hill.  I couldn't have said anything if I had wanted to.  Normally I would have been extremely proud that I had already walked part way out to the pier, fished for almost 2 hours straight and THEN made it through the sand.

But that particular day was not a normal day.  Those people hurt me.  Because all they SAW was a fat woman waddling through the sand.  They didn't see ME.  They didn't see the struggle I go through every day because of my illness.

They didn't see the pain, discouragement, embarrassment or frustration I experience trying to do day-to-day things.  They don't know how many times I almost died in the last 11 years.  They don't know that I have an incurable disease.

So the next time you see someone struggling, or grumpy, or who you THINK may be giving you a scowl or frown, give them the benefit of the doubt.  Maybe they are in pain.  Maybe they would like to smile at you but can't because their facial muscles are all but paralyzed.  Maybe they are tired of struggling day to day with a disease that shows no sympathy and does not discriminate.

Maybe, it's someone just like me.

1 comment:

Patty Ann said...

Kerri, I have migraines, they aren't as bad as what you are going through, but they have their moments. I think we can all learn to be just a little bit kinder to everyone around us. Most people are carrying some invisible burdens, even if they aren't illness, they are still hurting. Seems to me that we all need to be just a little bit more gentle when dealing with each other. Love you!