Saturday, August 28, 2010

Chronic, Invisible Illness

Invisible Illness Awareness Week is September 13-19. However, I don't want to wait until then to start writing about it. The more information we can get "out there" the better off and more educated people will be.

I've talked about judgement, which I admit is super tough to NOT do. I'm sure I do it too! If I see certain people doing certain things I make assumptions. I do it a LOT less than I used to, but sometimes I don't think I'm even aware of it. I think our society has almost ingrained certain images into our mind of what's right, what's wrong, and what to think about this or that. Well it's time to start using our own brains, people.

Much of what society says is okay is definitely NOT.

Here are some things NOT to say to something with an "invisible" illness.

1. You look really good today! { only took me 10 minutes to put my ponytail in today because my arms can't stay up for more than 10 seconds. I put make up on so you don't see the luggage under my eyes from not sleeping from being in pain, or not able to breathe...}

2. Well, you don't LOOK sick. {well thank God. I must not be then!}

3. I read about this doctor who uses hypnosis to cure anything! Maybe you should call him! {Ah, yes, and maybe I'll end up quacking like a duck when the clock chimes. Maybe you should go play in traffic. It will probably have the same effect.}

4. "Where do you work?"
"I can't. I have Myashtenia Gravis and cannot work anymore."
"Well have you tried? You look okay to me." {Well, stop the presses. If I look okay to YOU then I must be okay! Hallelujah! Of course I've TRIED. Do you think I LIKE not being able to work?}

5. "I'm so sorry. This must be so difficult for you! I couldn't never get through it. I'd just curl up and die." {Gee, thanks. Like I'm not depressed about it enough already!}

6. "Well, if you just have enough faith God will heal you." {Don't get me started on this one!!!}

7. "Oh, is that serious?" {Don't ask unless you really want to know. And most of the time, casual people don't want to know.}

8. "How are you?" {Honestly? See my answer to number 7. I may ask you if you want the TRUTH, or if you want me to just say fine. People always look shocked, which never ceases to amaze me.}

9. "What did you do to get that?" {Yes, I'm sure it's my fault. I'm sure I did something to set off this autoimmune time bomb in my body.}

10. "Maybe you should see a psychiatrist." {First, believe me I have. Mostly because of people like you. Second, just because YOU don't see it, doesn't mean it's not there. I. AM. NOT. CRAZY.}

And yes, I have actually heard To my face. Nice, I know.

If you have any questions about Myasthenia Gravis, chronic illness, Invisible Illness, whatever, PLEASE leave a comment and I will be MORE than happy to answer them.

Have a wonderful weekend!


CoconutPalmDesigns said...

Number 3 is just too much! I have alopecia areata and was taken, as a teenager, to a doctor who looked in my eyes to see what was wrong with me. She was the biggest quack and I just can't believe my mother would really put any faith in her.

I'm sorry you've heard all these. People astonish me sometimes.

Cheers :-)
- Rainforest Mommy

Karin said...

Wonder if "just plain stupid & insensitive" could count as an invisible illness? Oh, no, probably not, since most people that are such are obviously ill. Sorry you have to endure such rot AND your illness too.

Young Wife said...

Oh. Wow. People are so insensitive and ignorant.