Wednesday, April 16, 2014

Wordless Wednesday #HAWMC


This picture comes from the #invisible #disabilities banquet from last year (http://InvisibleDisabilities.org). I didn't know it at the time, but Sherri, wife of founder Wayne Connell, is the one who came up with the term "Invisible Illness" (and they have the documents to prove it too!) and I was lucky enough to be seated with Sherri's mom at the banquet! It was a marvelous evening, and I was so delighted to be able to attend.

It amazes me how many people are involved in this community who you would never think of as sick. Take for example one of the 2013 Award recipients: Kevin Sorbo, or as you probably knew him, TV's Hercules.that's right, the guy who played the strongest hero-of-old has a chronic illness, and one that would qualify him for disability, based on his descriptions of how they had to manage symptoms on the set. (Yes, he was ill during the shooting of that series... You didn't realize he really was Hercules, but for totally different reasons!)

And that's the thing, most of my employers were willing to work around my health issues. I was sick a lot longer than my disability date tells. For the year prior, I was working through migraines and sudden weight loss that left me too dizzy to climb stairs. I wasn't coming in to work on a set schedule, but then my boss was showing up later than me! So it was all good... Until my disease crossed the line and I couldn't even work under those conditions.

If I'm honest, much of my anxiety and discomfort comes from the fact that my disease is invisible. On the one hand, it's a plain advantage because I don't get judged as less capable just by the way I look. On the down side, the expectation is that I am just as capable as anyone else, and I'm not. But I have no way of proving that to anyone else.

So to me, I've already pissed you off... You just don't know it yet, and I can't handle knowing I'm eventually going to let you down bad enough to warrant you yelling and/or judging me as unwanted (even if that never actually happens). That anticipation right there makes me neurotic and in "people-pleasing" mode, that all of the therapy I've been through has been wasted money. And they don't made SSRI that strong! Lol

I have to thank InvisibleDisabilities.org, because it's through their continued work that I am able to be less neurotic about my disease. Because they are spreading awareness of what it means to look good, and still be chronically ill. They've worked with the government, they've done outreach and awareness campaigns... They've really done a tremendous amount for our community. Go pick up one of their glow-in-the-dark (I *love* that!) awareness bands and the booklet: But you LOOK Good! I believe purchases are tax deductible (in the States).

Thank you so much to Wayne, Sherri, and their families for their dedication to this cause!


*(Edited to add:) To be fair, having to "prove" I'm worthy of being called "sick" is directly related to a trauma I had to endure --- I did not have adequate pain contol for 3 of the 4.5 years that I had my migraine. So there is psychological damage there... I think many of us with invisible disabilities can relate to that in some sense. I'm not sure what to do about it though, so I'm open to suggestion...

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