The Truth About Chronic Illness: A Poem

There will be times when you have to live off ramen, poptarts and take-out because you don't have the strength to cook.

There will be nights you can't sleep because the pain is so bad, and days you can't stay up because you're so tired.

There will be days you'll wish the ground would open up and swallow you whole.

There will be years you have to rely on welfare, or savings, or the kindness of others.

There will be times you feel guilty for that.

There will be countless doctor's appointments. You'll be weighed and questioned and pricked with needles. You'll have x-rays and blood tests and ultrasounds. Lots of meds. Lots.

There will be invitations you'll have to turn down, parties you'll have to leave early, brunches you'll have to cancel at the last minute.

There will be times people won't understand. And you'll feel awful about that.

There will be weeks you can't leave bed, days you can't leave the house, mornings you can't shower or brush your teeth. You'll feel unkempt and pathetic and ugly.

But

You'll think to yourself, 

"I'm stronger than ever before.

Other spoonies understand me.

My family-- my true, chosen family-- has never left me.

And I am not my illness."

And somehow, you'll survive.

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Just keep fighting.

Every day, I pray my pain will go away and this dark, increasingly heavy cloud of fatigue over me will dissipate... but it doesn't. The more tired I am during the day, the more my insomnia plagues me at night, and I eventually pass out, sleeping all day. Then I can't fall asleep the next night. It's a never-ending cycle.

And yet, optimist that I am, I keep hoping my fatigue will magically go away, my doctors will find a cure for my pain, I'll 'snap out of' this, I'll drink a few cups of coffee or take an Advil and be totally fine.

But chronic pain and fatigue don't just disappear.

It's a daily struggle to walk the very thin line between accepting we have an ever-present disability, and allowing that admission to derail our attempts to live a fulfilling, happy, meaningful life. 

I know the struggle is worth it, deep down. Even on days like today, when I've been up for almost 40 hours or when my joints ache so much I sob or when I can't stop pulling my hair out.

Just keep fighting.

I shed people like snakes shed skin. I'm not proud of it.

I'm so tired. All the time. I can't keep up with the people in my life, and I'm afraid they'll decide they don't want to be part of it anymore. Sometimes that's exactly what happens.

Days feel like weeks until I finally fall asleep. Then I sleep the week away, and find everyone's moved on with their lives but me. I'm stuck in a constant fight between insomnia and fatigue, too exhausted to do anything at all.

Relationships take work, and I'm willing to put in the time and effort. I'm just not (always) able to. My nearest and dearest understand, but I feel like an awful person when I'm not able to give them that.

There's a very thin line between cutting yourself slack and indulging in self care, versus using your illness as an excuse to eschew responsibility. Illness is a reason for falling behind, not an excuse to stay there. I know you know that. I know I know that. And I know we're careful not to cross that line.

How do you pick up the pieces after an especially tough couple weeks of unrelenting fatigue?

(note) Title inspired by two lines of It's Love by The Jane Austen Argument.