Tuesday, August 24, 2010

Invisible Illness

Invisible. Shrouded. Hidden. Veiled. Unseeable.

Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. Sometimes I wear an eye patch because of the double vision, but there again...could be an injury.

When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don't feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why? I. Don't. Know.

Pride I suppose? Just because I feel like crap doesn't mean I have to look like crap?

So what would I wear if I could wear my illness? A sign that says, "I'm not drunk I have Myasthenia Gravis, that's why my speech is slurred and I sound like I have marbles in my mouth, and I may walk unevenly."

Another that says, "If I'm riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly."

Probably should have one that says, "I can't breathe because my muscles are severely impaired by neuromuscular weakness, I'm not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs."

And, "Please don't make "Arrrr, matey" sounds when I have a patch over one eye. I have double vision, probably a severe headache from the double vision, and I'm exhausted. Unless I take the lead, I'm probably not in the mood for jokes."

I would have a sign that says, "Don't judge me for parking in handicapped just because I look okay now. When I'm done walking through this store, I may have to stop three times on the way to the parking lot."

And of course a sign that says, "Please don't say, 'But you look so good!' For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?"

We are out there. We are someone you know.

Ever wonder why the middle age man on the subway is always so grumpy? Maybe he's in chronic pain.

Ever think that the young woman who "can't control her child" on the train has an invisible illness that makes her so weak and tired it's truly a miracle she and her child are even ON the train?

We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.
And we don't want to be invisible anymore.

7 comments:

Hello! I'm Kate. said...

I love this post--I always try to keep in mind what "invisiblities" might be going on in someone's life before I make a snap judgement.

I had a friend whose mother was diabetic. She went into a diabetic attack in the middle of a department store & the employees there kicked her out of the store because they thought she was drunk. And this is a depressing ending because she didn't live through that seizure. All she needed was some ORANGE JUICE & a call to 911 and she would have been fine. That story haunts me because my father is now diabetic, his brother & mother are diabetic, & my MIL has MG--what if someone treated them as disgustingly as those store clerks did to that poor woman?!

Kay's post today is on Optical Illusions in regards to chronic illness...y'all must have been thinking alike today.

bluewhitelife said...

Love this post :) Most illnesses are "invisible" hence why we need to be just a little more NICE. You're not invisible to me though :)

Dorkys Ramos said...

Great reminder. We often forget what you so eloquently stated here. It's easy to just rush about only thinking about the problems in our little world without stopping to think about others who have so much more to think about - things we just take for granted.

Karin said...

Hang in there girlfriend!! You might weak in body, but your spirit is strong & inspirational. And you're doing a bang-up job of educating lots of people!!

Jenxr77 said...

1st - Love the blog design!
2nd - I just today got the "you look so great" from the cardiologist! That was after explaining that it took 2 hours to get out of bed due to extreme leg pain and my eye was so droopy, well you know. Urggg, I think they are trying to be nice, but it is deflating on bad days when you feel like no one really understands.
Okay, I won't go on more of a tangent but well done! you speak for all of us with hidden, and sometimes not so hidden, illnesses.
Jen

CoconutPalmDesigns said...

Great post. You are so right, most people, myself included, often don't think what someone else is going through and are quick to judge. Thank you for reminding me to stop and think before just reacting.

Cheers :-)
- Rainforest Mommy

Margaret Almon said...

Thank you for writing this. You can never know how much pain, emotional or physical, someone is in just by looking.