Four Things You Didn’t Know About People with Chronic Illness

Ever wonder how someone with chronic illness really feels? Let me clue you in:

1. We’re Thrilled as FUCK When You Cancel Our Plans.

"Did someone say early bedtime???"

“Did someone say early bedtime???”

When you call at the last minute to say that you have to stay late at work and can’t make it to dinner–do you know that by the time you say, “maybe we can reschedule?” I’m already whipping off my bra and getting into bed And I’m not even feeling bad, bro. It’s so rare that I’M not the one breaking plans–this is basically like a free pass for me. I’m going to throw caution to the wind and nap like I mean it.

2. We’re Having a Panic Attack Over the Menu.

"Yeah--I'm gonna need a minute."

“Yeah–I’m gonna need a minute.”

So that has dairy in it. That has too much fiber. That has chocolate. Why can’t I get a side dish that isn’t fried? Ordering from a restaurant menu is an exercise in strategy. It all boils down to one thing though: are we going out after this or am I going home so I can be sick after eating in the comfort of my own bathroom? Not only that, but you know this isn’t the first time I’ve seen this menu, right? I’ve been analyzing what to have for dinner since 8AM this morning.

3. We Know More Than You Think About What the Lord Giveth and What he Taketh Away

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I have two well-paying jobs, and so many of my friends can give me a “girl that’s some bullshit” look when I worry about money or toast ginger ale to the idea of this night’s sushi being my weekly splurge item. Fact is though, I’ve got bills you wouldn’t dream of. If my co-pay is $25 an appointment and I’ve got a standard of three appointments a week (on a good week) that’s an average of $75 out of pocket a week. Then there’s medications, preventative or alternative treatment and all of the little things that I can’t do myself (think: food delivery, paying someone to clean when I’m out of spoons, etc.) You’d be surprised just how much you’d pay for a dog walker with fits of fatigue at three in the afternoon.

4.  Every Task Has a Cost

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Wearing high heels. Carrying bags of groceries to and from the car. Washing long hair. Standing at a stove top to cook food. Walking the dog down the street. They might all seem like normal activities–but to patients with Chronic Illness–they’re all very careful choices. We only have so much energy, so just like turning off the apps and features on your smartphone–we have to make careful choices CONSTANTLY about how we use our energy. It’s something most folks don’t ever have to think about, but for it’s something you’re always conscious of.  Everything is a choice.

 

Comment with some things someone else might not know about you and your chronic illness!

Comments

comments

  • joy

    I have two daughters with EDS, one with IBS & polycystic ovarian syndrome the other has scoliosis & very mild spina bifida.
    Then add in the normal ear & sinus infections. The $30 Dr copays per child add up quickly, not to mention the $200 ER copays. July has been a good month with “only” $350 in co pays so far!

    As for fatigue, you’re right on the money. I also have had schools and other parents ask me, repeatedly, to volunteer at school because I’m a stay at home mom. I stay home because I’m disabled, not because I’m rolling in dough.

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