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I'm Not Getting Better, and That's OK

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author in hospital bed

I keep thinking, “I’ll write when I’m better, I’ll write when I’m better.”

I’m not better. I’m not getting better. I have chronic illnesses. I may have better days, but I’m not getting better.

I’m not in that place of acceptance yet. I’m not seeing the light at the end of the
tunnel, nor do I have some great epiphany to share with everyone.

I am in the middle of a rough time. I admit it. I’m down, I’m out most of the time, and my attitude reflects that.

And then I thought, I can’t be alone in this. I can’t be the only one who tries to get better and doesn’t. Who’s spent years with the glass half full, and now it’s on E. Or, the only one who wants to throw the damn glass at the wall and cuss
it out, along with these chronic illnesses.

I wish I could write some prolific story about how everything is right in the world even though it’s upside down, but I can’t.  I am tired. I am sick. I am angry about it. I am in denial. I am, for the first time in my life, quavering over the half-full glass and teetering more along the lines of the near-empty glass.  That’s reality. I’m owning it for the first time and definitely for the first time publicly.

I would rather make dinner than have my child bring it to me in bed because I can’t get up. I’m proud but shamed that my oldest panics and bring me my Epi-pens because he’s scared I’ll die (I’m proud he knows when I need them). It’s miserable and depressing and anxiety-inducing — although my middle son gets awfully excited when the ambulance and EMTs arrive; he loves the lights and uniforms. So, there’s one bonus.

Will it get better?  I hope so. Everyone who’s not sick says it will. They mean well. But in my super cranky state of mind, that’s not really what I want to hear— they don’t really understand. If I’m more myself, I would say they mean well and let it go. But Miss Cranky Pants avoids them so she doesn’t say something rude. My tolerance levels are teetering on empty, as is my ability to censor myself.

Things tend to come out during times of extreme exhaustion (and medication cocktails) that wouldn’t normally. And being at the end of my rope and admitting it for the first time, my sense of remorse is lacking a bit too.

You know how rock stars have a different persona on stage, how they turn into someone else?   suppose I do too. Miss Cranky Pants has a few levels of crankiness to her, but then she’s complex, like her illnesses. When she was alone, she could hide it. Now that she has a family of her own, which she didn’t think possible at 21 when this journey down the road less traveled began, she can’t hide it.

I can’t hide it.

Not from the people most important to me. They get the brunt of it. I need them. I need their help. I hate needing help — it fuels Miss Cranky Pants’ fire. Which isn’t fair to anyone. But reality isn’t always fair.

So, why am I writing this?

To hopefully find someone else in that miserable place. To find camaraderie in our miserableness. To let people know it’s not always OK. We, the chronically ill, are not always chipper and sweet and seemingly healthy, and that is OK. It’s OK to have a Miss Cranky Pants in you. It’s OK that your child puts on your bandage, or feeds you soup, or gets you a cold/wet cloth to put onyour feverish head. It’s OK that our kids are learning empathy and to care for a loved one. You would — and have — done it for them. Let them love you back. You’re teaching them to tough out the rough times. You’re teaching them love is

It’s OK to not be OK.

Reality isn’t always tied up in a bow — it’s not always pretty. But, even Miss Cranky Pants deserves a break now and then. I hope she (I) gets one.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 23, 2016
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