Monday, June 3, 2013

A Hearty Helping of Ugh, With a Side of Woe is Me.

Chronic illness is a bitch.

(By the way, if you've grown ever so tired of this subject, I understand.  Pack 'er up and wait for the next hilarious Sophie moment.  She just informed me she's going to make "something extraordinary out of regular, everyday Q-tips", so you shouldn't have to wait long!)  :-)

Unlike cancer or diabetes or something that is fairly universally understood, rare diseases like POTS Syndrome, or Carcinoid, or Lyme Disease, or Mastocytosis often are not.  Even by physicians.

Chronic diseases are more subtle.  Their flares are sporadic.  They don't often radically alter your appearance, at least not suddenly.  You don't necessarily "look sick".  And because of that, people allow themselves to think you are fine.  Your dirty house is presumed to be laziness.  When you don't join in on activities people invited you to, you're rude.  People can't imagine "what in the world is wrong with you", so they talk behind your back to try to figure it out.  They distance themselves from you.

Empathy is usually born from a shared experience.  It means you have gone through a similar trial, and because of that, you are able to directly identify with a person's feelings or difficulties.  Sympathy is different.  Sympathy is the capacity to share someone's feelings or pain, even without experiencing their struggle personally.

I would venture to say either would be a breath of fresh air to a person suffering from a chronic illness.  Granted, it's more difficult to achieve true empathy - to get in that inner circle of understanding and be able to offer the kind of support that comes from really "getting it".  But, let me assure you, you reeeeally don't want to "get it", and sympathy is nice, too.  Sympathy involves a little work, though - it involves taking the time to do some research - because you care about the person who is "acting weird" and you want to be able to show compassion for them and what they're going through.

Sympathy means letting it not be about you for a moment.

It sometimes means, if you're able, taking it a step beyond praying, to actually doing something to help.

Chronic illness, compared to something acute, is draining because, well, it's chronic.  It's long-lasting.  It's always present.  It doesn't go away...regardless of treatment, or rest, or medicine, or (fill in the blank), it remains.  And people get tired of that.  They get bored.  They moooooove on.  It's human nature for the shock of a diagnosis to wear off after time passes. 

But what it means for the person enduring that diagnosis is a day that looks very different than what you're likely envisioning.  A day of debilitating fatigue, nausea, and a deep aching in places you didn't even know existed.   A day of wobbling around like a drunkard - occasionally stumbling into walls and entertaining your children.  A day of plopping down on the kitchen floor in the middle of making spaghetti because you know if you don't, you're running the risk of doing a face plant into the tomato sauce.  A day of flushing bright red with heat that causes you to scramble, skidding and popping wheelies, to get to a fan and wet rag to cool the burning fire inside.  A day of smelling like a nursing home because of the warm oats and Bengay constantly present on your head, back, neck, shoulder, abdomen.  A day of itching so fiercely, you frequently draw blood clawing at yourself.  A day of walking around with bizarre rashes that spontaneously pop up and then refused to be calmed.  A day of not driving because the balance issues and visual disturbances make you scared to be in a moving vehicle, especially with your children, so you stay confined to your house.  A day of feeling like the frontrunner for the Bummer Mom Award because you so often depend on friends to provide your children what you can't always give them - fun.  Life outside in the sunshine.  Respite from your disease.

And then another day after that, and another day and another day after that.

And yet there you are - on the outside looking just "fine".  You're breathing.  You're mobile.  Your hair (most of it, at least) is still present.  You aren't hooked up to machines.  Heck, you're not even in the hospital!  And while you thank God for that EVERY.SINGLE.DAY, you also die a little inside because people have ZERO concept of what you're going through on the inside.  And if you smile or laugh or hints of your former personality peep through, you get accused of faking it - of "picking and choosing" when you "want to be ill" based on how fun the activity sounds. 

You're not a person who gets hurt feelings, but over and over you're hurt.

You live a life on internet support groups and Facebook because it allows you to talk to people, to share in their lives, to feel a part of what's going on - even if it's a pitiful substitute for the real thing.  You feel the judgement of those who think you should "get off the computer and get out there" - who get annoyed because you're clogging up their News Feed with multiple posts a day.

Chronic illness is such a double-edged sword.  If you hide it, to try to achieve some semblance of normalcy, you're expected to behave like a normal person.  If you dump it all out there - even just occasionally for everyone to see, you risk further isolation with your bad behavior and your neediness.

So you keep it inside.  You bottle it up.  You push it down.  And your forge on.

Until one day you ask someone close to you for help and they sigh and provide you with a mile-long list of others who might be able to help and it triggers something deep inside you and everything comes spewing out in a big rush of ugliness and regret.  60 seconds of screaming, crying, indiscernible, unintelligible pent up rage and frustration come flying out like vomit.

And then you immediately feel horrible for making that person feel bad for making you feel like a burden.


Is this a pity party?  Possibly.

Is it always this hard?  No.  It's not.

Have you lost the ability to experience joy, Kristy?  Definitely not.  In fact, I think I experience it more deeply because of my illness.

That said, today I needed to vent.

And this is where I ask you to read my words and HEAR them.  To not assume this is a passive-aggressive attempt to "call you out".  To not take this general garment and feel it's tailor made to fit you.

To assume this is, in fact, about me and to just let me say it.  And listen. 

If you can do that, it will mean more than I can ever, ever express.

Perspective.  My day was not as crappy as this guy's, bless his heart.  :(


Lora said...

I'm sorry you have to go through that. When anyone reading your blog or Facebook posts can clearly see that all you want is to be a good mother and there for your girls and your family. Love you. Don't judge my punctuation or lack thereof.

Lora Lee

Kritter Krit said...

Thanks for the sweet response, Lore Lee! I don't give a hoot about your punctuation, I just love that you took the time to offer some encouragement. Love you, too, girlie! :)

DebMcC said...

Well said. Thank you.

Jacqueline said...

Wow, Kristy.
Keep posting.
Deep and powerful insights.
I truly appreciate your voice.

Jacqueline (friend of Em's in ABQ)

The Mani said...

I love you Kritter.

whatthebest-mattressforalice said...

I trying to find you on facebook.

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