Sunday, September 20, 2009

Invisible Illness Week - A Few Thoughts

I wasn't really feeling Invisible Illness Week, you know? Why, exactly, do I need a week to focus even more on what it is to be abnormal. I don't get a present or flowers, like my mom does on Mother's Day. It's more like Black History Month, I guess. *They* set aside a little time annually to basically give an acknowledging nod to a group of people who are repressed, suffering, or otherwise in need of attention that go largely unnoticed for the rest of the year. Yes?

But, I get it, of course. I'm here. I've got the virtual badge and the invisible illness to go with it. My prize is disability payments and occasional scorn from those who have less than a clue about what it is to be less than perfectly functioning.

I have a grandmother-type person in my life who is well aware of my issues. We've talked at length about my migraines, how I treat them and the effect they have on my life. She, herself, has suffered from ailments of mysterious origins, so she had always been sweet and empathetic towards me. Or, so I thought. I learned otherwise when I overheard her telling someone that she doesn't care who has sensitivities to scent, she's going to wear her perfume because she feels prettier with it. She realized a little too late that I was within earshot, and hasn't looked me in the eye or spoken to me since. Is it embarrassment, or a unwillingness to face the consequences of her selfishness? We've never been close, but her intentionally avoiding even saying hello and goodbye at family events is becoming a little obvious. I'm not rushing to reassure her either, because if she's still laying on the cologne like she does (and she DOES) I don't really want to be around her anyway.

Now that I think about it, my migraines have given me a small gift in that way: I no longer have to deal with anyone I don't want to. People who are too loud or rude, people who smell, people who have personal space or boundaries issues, people who interrogate me about my illness as if that's the only thing I have to talk about, I can avoid them all with one simple phrase, "I'm sorry, but you are giving me a headache." I just throw the "I'm sorry" in there to be polite, but I'm really not sorry. Get the hell away from me all of you insensitive jerks.

I've mentioned this before, but I am nervous about getting my disabled placard from the DMV. Oh, the happy dream it'll be when I can park close enough to stores to still be functional by the time I get in the door. I don't imagine that I'll use it every time I go out, but if I need it, I have no shame. What I do have is a fear of the crazy judger people out there who think that they are the disabled police. If my head hurts, and I need to use a disabled spot to make it in and out of my destination with *less* exertion icing being lathered onto my migrainous cake, I really doubt I'm going to be able to defend myself adequately. Or, maybe I'll just rage out, which happens when the wrong buttons are pushed on my head. What I need is something like a cane or a wheelchair, something that sends the message that something is wrong with me and there is no need to bother me with my parking choices. Something to make my disability a little more visible. **Lightbulb** I bet if I wear my bright yellow industrial-looking earmuffs while I park my car in the blue spot, no one will bother me. They'll all stare, but I doubt I'll get any conversation. Unless I see someone I know. I am NOT pretty in those earmuffs.

What was I talking about again? Oh yeah, sorry.

The nice thing about my illness being invisible it that I can fake it. (This can also be a bad thing, but we'll touch on that in another post.) When I am just meeting someone for the first time, or I'm at a birthday party, I can smile and be quietly cheerful, and no one is the wiser to the demolition that is going on inside my head. I can't keep it up for long, though. Faking it is exhausting.

I do sometimes wish my illness was more visible. It would be easier in some respects. Then again, my invisible burdens weigh me down so much I can barely move some days, so how I can assume that someone else's would be easier, just because they can be seen?

I am what I am, I have what I have, and all I can do is my best with it. So, I do.


WinnyNinny PooPoo said...

When you get your the blue hanger thingie don't worry about the "handicapped parking police" gripers - they just want that spot themselves - the heck with them! You deserve that spot just like any other person with a disability.

Scents were always a trigger for me - just certain ones. People who surround themselves in a cloud of perfume have probably desensitized themselves to how much they are actually using and how far the cloud extends!

Diana Lee said...

Did you have a chance to listen to any of the Invisible Illness chats? Oh my gosh, they are so amazing! It's wonderful to not feel so alone, but more importantly, they are jam packed full of important information to help us live our best lives. Everything from more abstract thoughts about how to keep going when it's hard to very practical advice about applying for SS disability, finding health insurance with pre existing conditions and keeping your job despite your limitations.

It would be a real waste indeed if it was all about just saying, hey we're sick. But it's so much more than that and I get so much out of it.

Stephanie said...

Diana - Despite my preconceptions, I found myself enjoying the gajillions of "30 things" posts, and I found a lot more blogs and resources because of all of the cross-promoting. That was pretty great.

I tried listening to the podcasts, but they hurt my ears. :( I need captions on my computer.

WinnyNinny - Perfume wearers and smokers. They make me crazy with their blissful ignorance. :)

Diana Lee said...

Well that just stinks! I can imagine you weren't the only migraineur with that problem.

I had a blast reading all the 30 things posts, too. Very eye opening!