Chronic-Pain: I’m Done Apologizing For Not Showing Up

I have a rare, chronic neurological disease that affects my central nervous system. It’s caused me to become temporarily half-blind and feel throbbing pain everywhere.

I was diagnosed with Devic’s disease (the sister of MS) last month after my MRI scans showed optic neuritis and brain lesions — and it’s completely shattered me.

Seven years ago, I experienced the same heartbreak in a cold office when the doctor told me I had systemic lupus. No matter how long you’ve lived with chronic pain, you’re never quite prepared for the next invasion of torment. The pain from Devic’s disease fused with the suffering of lupus are unbearable at times. I feel ambushed. Walking is a joke as my knees have turned to brick. The pain is unreal. All I want to do is curl up in a blanket, take pain medicine, and sleep all the time (if I could sleep). At least when I’m sleeping, I’m not crying from the unbearable waves of pain or feeling the sting of missing the things I could once do normally.

Living with chronic disease wrecks you emotionally and it devastates all parts of your life. I’m a teacher, and I’ve missed sixteen days of work and it’s barely November. I have to apply for disability in my twenties and stay on a life-long treatment of IV infusions every two weeks.

I live in a world of uncharted, scary possibilities; the only known thing being the familiar pain I know I’ll face the moment my eyes awake in the morning.

And I’m done . . . I’m done apologizing for not showing up when I’m in the pit of hell swelling with tears every hour. I’m done pushing through physical suffering. I’m done pretending I’m OK; being able to walk without showing my pain is a skill I shouldn’t have mastered. I’m done pretending that I’m not absolutely wrecked by this physical, mental, and emotional assault on my body.

I’ve no reason to miss work. I love what I do and I’ve worked damned hard to be a teacher. Forget sick days, I’m just losing income now. But I can’t worry about things like that. I have to have an unrelenting faith that things are going to work out. That the things that I desire to do now may not happen today, but they will. That I will be back on my feet, warm mug in hand, ready to face anything in my day — pain-free.

I saw this on Twitter once:

Chronic illness: no one gets it, until they get it.

Pretty accurate I’d say. I can’t worry myself with what people think of me. They’ve no idea the pain is still there even when I’m smiling. That the pain is still within, even when I’m not talking about it.

I don’t want my struggle to make me a victim. I want my battle to give others the courage to keep going even if that means — not going. Not showing up. Not saying yes to every — single — thing. Staying in. Crying if you need to. Putting comfy clothes on and eating more chocolate than usual. Putting you first.

People need to understand that saying no takes just as much courage as saying yes. It hurts us to say no — to not show up because we’re struck with an incurable illness that we can’t control. It hurts us to not show up to the birthday party you had planned or the coffee date to catch up on life. We wish we could have control over when our pain strikes us, but we never will. It knocks, comes in uninvited, and changes everything we thought we’d be doing. Sometimes it’s manageable, most times it’s not. In a flare, it’s usually a high pain day, week, or month — and we’re probably staying in our PJ’s.

The thing with a chronic illness is that it’s not going anywhere. It’s made it’s incurable home and we have to arrange our furniture — some things are thrown out, some things collect dust, some things get broken.

Chronic pain isn’t a cry for attention. It’s not something we ask for or choose. Chronic illness is something that happens. It’s a disability. It’s real. The unknown is scary and most days, we don’t know how we’re going to manage the pain, we’ve just learned to. But we can’t always be strong.

And for pete’s sake, we don’t always have to be grateful it’s not worse.

So, I’m done apologizing for not showing up when I simply cannot. I’m done being ungentle to myself and forcing my body to push through the pain when every second it’s begging me to just stop. I need to heal the way that is right for me. It’s the only way I’ll get better — and I’m done apologizing for it.

Also published on: The Mighty

When You’re Homesick For All That You Were Before Depression

My fifth attempt.

This is my fifth attempt at writing this piece only to erase what I’ve written to prove to myself that maybe, just maybe I’m not in this.

Stare at blank page.

Resume latest episode of “This Is Us.”

Tears birth that have nothing to do with the show.

Close laptop.

I can’t wrap my mind around the place I’m at very well and so writing about it seems absurd — silly, even. You could say it’s all of life’s major disappointments all piling up. Or you might say it’s living with an incurable disease, but then I’d tell you I’d choose my physical pain over depression any day.

Maybe it’s people’s disappointments one after the other.

The timing of it all.

It pains me that I no longer feel like a broken plate of glass, salvageable because it’s only cracked in three pieces. Maybe some people can cement their broken parts with green tea matcha and essential oils or whatever the earthy healing trend is today, but that doesn’t cut it for me.

I feel crushed. Shattered in ashes.

Dust-like.

Homesick for all I was before depression met me.

The home of my heart is vacant; every blow of life only churns the ashes round and round in my heart.

If you’re going through depression, I know you feel heavy. You make a list of different reasons to tell your friends why you can’t make the outing so they sound different each time. Maybe you have a good family, a loving spouse, even a furry friend to take away your Sunday blues, but you still feel alone. It’s not that you’re not grateful — you’re heartbroken, hopeless at the thought you’re alive and yet no matter how hard you keep trying, you can’t seem to be present.

I have a reoccurring memory of my husband stopping me in our hallway to dance with me. I started to cry, croaking, “I don’t feel like dancing.” My husband’s reply was everything when he said, “Well then, we’re gonna dance.” Though my husband was holding me, I couldn’t seem to feel him. I only felt his hands holding mine and the warmth his neck brought to my freezing nose. My tears could fill a stream. No, it’s not that I’m not grateful. I’m desperate — frantic for just a moment not to feel miles and miles away from everything and everyone I love.

Depression feels like you’re waiting for something that’s never going to happen. I don’t know how to encourage you in my pain except to tell you a short story.

In early October of this year, I got a tattoo of an olive branch. Its meaning goes deep in my veins: Olive trees surprisingly thrive in deserts and rocky soil and when these trees are pressed, they produce something called beaten oil of the highest quality.

Olive oil was used to light household lamps in the past — the very thing that came once the fruit was picked and crushed, became the thing that gave new light.

Two months later, I walked into a Christian book store and saw a book titled, “100 Things God Loves About You.”

I opened the book and landed on #22:

God loves your ashes.

Tears filled my eyes and the words became a blur. I realized my dust doesn’t have to mean the end to anything. God loves my ashes because He will use them to make something new, like He did in the beginning.

But dust was essential, you see. This heartache has a purpose. And like other seasons of my life, this will be something I’ll look back on and know exactly why it had to happen this way.

Whether it starts out as a small flicker like the day I opened that book, the household lamp of my heart will turn on.

My light is coming.

Originally published on The Mighty