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

If You Think You’re Tired of Listening to People Talk About Their Chronic Pain, Imagine How Tired They Are of Living With It

Chronic pain affects more than 1.5 billion humans worldwide so the chances that you’ve heard someone talk about their pain is pretty likely. However, if this is your first time hearing about chronic pain, you’ll probably understand it more after reading this.

Chronic pain feels like you’re wearing a 100-pound coat filled with random pricks of cacti. Depending on the kind of chronic pain one is dealing with, it’s likely invisible, which means a lot of people can’t comprehend how someone can feel like this all the time.

I was 21 years old when I was diagnosed with systemic lupus. It’s been seven years now and if you know chronic illness — you know how tired we are of living with it.

I remember the day after I was diagnosed, I needed to go to the grocery store for milk. It was a cold morning in Colorado Springs and as if I wasn’t stiff already, I had worn three layers that made my movement robotic. I remember waiting for the area where the milk was to be clear of people in case I did something embarrassing. Well, as my life would have it, I grabbed the milk carton with my wrists and it slipped down and bounced on the floor. What was more embarrassing was trying to pick it up. Good Lord…it felt like bobbing for apples. All of a sudden I wished I hadn’t worn three layers of clothes as it only made me sweat more. A woman my age came around and picked it up for me (after she must have witnessed how ridiculous I looked). I made a weird, awkward laugh and muttered something like, “Sorry, ha-ha, condensation.” She replied with something along the lines of, “We all do it,” and then she was gone.
I starred at the milk carton in my basket and then at the girl as she walked away. I felt like I had egg on my face — so awkward and embarrassed. I stood there staring at my swollen, rosy hands wondering what my life was going to look like if I couldn’t pick up a carton of milk at 21 years old.

As time went on, the inevitable began. Pouring coffee was a struggle, brushing my teeth became a chore and brushing my hair was never going to happen.

My new normal was greeted by chronic pain in the mornings and kissed goodnight by never-ending tears. I knew I needed to accept the pain but I still couldn’t understand why my body was failing me.

My body continued to fail me throughout the years as I got sick with hypothyroidism, gastritis, migraine, and depression. And as much as I love the cold weather of October, this month has been especially piercing (and still painful) after I was diagnosed with Devic’s disease. They discovered I have optic neuritis and five brain lesions. I couldn’t say why pain likes to torture me. Why, if I’m not vomiting every day from gastritis for a week, I’m flaring in my knees or walking around half-blind with head pain for a month with sleep being my only relief. Why every second of every minute of the day I think about what it used to feel like to not feel a damn thing. And I look at the girl at the grocery store that has that extra pep in her step and I can’t help but feel an ache for normalcy.

I wish people would understand that chronic pain is a disease. It’s pain that requires lifelong management and it’s not cured by a magic pill or magical green tea matcha. People who suffer from chronic illness, or any disease for that matter, didn’t do it to themselves by what they ate or didn’t eat. Think about that before you blame a human being going through their own never-ending pain. Pain is pain and human life is human life. You can do all the right things and eat all the right things, but you won’t escape pain. It meets every one of us at some point in our lives.

Maybe if we tried to listen before we judged, we’d have a lot more people feeling less lonely in their pain.

I’d say I’m an extremely empathetic person toward chronic pain because I’ve been through the lonely part. You don’t even have to explain yourself to me — I just get it — and I’m sorry. I know you miss a thousand and one things and I wish I could tell you every broken part of you will be normal again, but I just don’t have the words. So, I’m going to tell you about the morning I drove to work and heard the Japanese legend of Kintsugi on 90.9 KCBI-FM.

According to legend, a Japanese shogun named Ashikaga Yoshimasa sent a cracked tea bowl back to China for repairs. However, upon its return, he was dismayed that it had been put back together with hideous metal staples and thus, Kintsugi was born. The tea bowl was put back together with golden glue and Yoshimasa found that it was even more beautiful after it had been broken and glued back together than it was before.

Kintsugi is related to the Japanese philosophy of Wabi-Sabi, which calls for seeing the beauty in the imperfect and also mushin, the acceptance of change. I know it doesn’t feel like it now, but as your pain breaks you — cracks you in every way — you’re changing into something new. You are your very own Kintsugi masterpiece.

So, to the people who don’t suffer from chronic illness, the next time you have the urge to give your opinion on chronic pain or perhaps roll your eyes at the person who takes a handi-cap spot even though they’re walking with two legs, remember that not all pain looks the same. Remember that they’re a human being suffering from a silent, invisible illness that you’re lucky you don’t have—and I hope you never have.


Remember that though you’re probably tired of hearing about people’s chronic pain, they’re undoubtedly more tired of living with it.

What if you were the golden glue that mended someone’s brokeness from chronic pain? That makes you part of the beautiful; a part of Kintsugi—a part of the change.

Don’t be a staple.