I-ragey

HAWMC Day 13: Perfect Comeback

Tell us about a time when you felt marginalized or stigmatized by someone because of your health condition. Maybe at the time you didn’t speak up, or maybe you did – what did you say or what would you have said to take back control and let them know they were out of line?

Because I don’t get enough bullshit from being a mother of twins, let’s add us some schizzle about how my health is some kind of Karmic penalty and/or how baking soda is going to cure it, but really…it’s all in my head, so just be “Happy.”

Twins: “Did you plan for twins?”

Yes. There’s a website you can go to and “Add to Cart.”

My personal favourite, from a woman: “So, are ya fixed yet?”

Lady, you are a special, special kind of stupid…

Anyhoooooooo…disease.

Lupus.

My favourite disease of “I’ve never heard of it thus it cannot be as bad as my cancer.” kind of perceptions.

Huhn. This prompt is making me a little rage-y.

Which makes me rage-y at people.

Then I emotionally eat Peanut M&Ms which then prompts a call from the Diabetes Police which then kicks my esteem in the junk.

So, here’s the thing. I have “Days.” These “Days.” are days wherein I pretty much have this defensive stance on being a Go, Go SpazzyAss and still being able to “Do.” shit.

SOOOOO, when people tell me shit that contraindicates the level of commitment I exude into trying to make myself a personification of Courage and Perseverance, I get a little rage-y.

Case in point:

Ran into a “friend” awhile back. Said friend and I had had a difference of opinions on certain things and I am happier without them and they are happier without me and life is pretty much cool.

BUT. Person knows of my disease, looks at me and says, without hesitation:

“Hey! You’re looking so great! Your lupus must be gone…how the hell are ya?” with a civil and friendly smile.

People, I lost my proverbial shit.

Without hesitation, in the middle of big box chain store, yelled out:

“Still dying! How are hell are you?”

 …and I took my leave.

I, um, am not really proud of that. I can’t even begin to explain it, let alone attempt to find reasoning or, hell, even an excuse.

DuelinthegreathallI meant every biting, scathing word I venomously spewed, like a Harry vs Voldemort end-game battle. I think if you could see the words, they would look like the red ring of death on your XBox…inflicting the same to-the-soul fear of impending defeat.

That.

*shifty eyes*

I get that people don’t know what to say, at times. I really do. But, the people saying “The Things.” are one person. Add up every person that makes a comment or off-handed remark, and suddenly I’ve got a “You don’t look sick.” onslaught of Stormtrooper proportions.

(how many geek references can one possibly make, I wonder)

I think it’s contributed to why I don’t want to “People.” right now or, at the very least, pick and choose very, very carefully what company I keep, or where I go.

I hate Lupus to the very fibre of my soul.

I wear a metric ton of makeup to hide my malar rash.

I put on a dazzling smile in attempt to hide my nauseating, Hounds of Hell kind of constant pain that makes me want to run head-first into a wall. Of nails. That are on fire.

I reach out to let people know that they matter because I fucking hate this very existence of living with a chronic disease that I know how important it is to be make to feel like you contribute to someone’s life in a positive manner…because I so often cannot wait for it to be over.

So.

When I hear that meme-making, well-intentioned, maybe-kinda-of-true-on-the-outside, “Hey, you’re looking great!” kind of comment, I secretly rage against the urge to punch the Cosmos in the junk.

I know you genuinely mean every loving word of it.

I’m hurting so bad that if my outsides matched my insides, you would probably call 911.

Maybe…I shall take the opportunity to ponder an alternative suggestion of wording that would enable people to express the outward truth that better validates the inner truth.

If you could rearrange a statement addressing someone with chronic disease that would be a positive, esteem reinforcing truth, yet validate their daily endurance of all things suckage…how would you say it?

That, my friends, is the right question.

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