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

Dear Teacher: You’re Not Wrong For Going Home

I know you’re finishing up your lesson plan in your classroom right now at six o’clock in the evening drinking whatever stale coffee you have left in your morning mug—I’ve been there.

But if there’s one thing I’ve learned from staying late at work, it’s that whatever I was working on could have been done the next day or the next week.

As teachers, we’re always trying to get ahead. We always feel like we can give more, do more, be more. But I’ll bet if you’re reading this, you already are.

The thing is, work will always be there. So go home. Go home to your family, your spouse, your children, or whomever your loved ones are at home and be with them.

Truly be with them; make memories and stop working. Yes, I have to swallow this pill every time I leave work and hope that it does its job on the road home. My husband reminds me of this every time I pick up my laptop to start writing IEP’s or my next lesson plan. Don’t get me wrong. I wholeheartedly believe in completing deadlines, but everything else can wait.

Statistics say teachers work an average 50 hours a week and we keep working over 400 hours of overtime a year. At the beginning of the school year, I stayed late at work for almost four months and kept working until nine o’clock at home. The time I was missing with my husband grew on me especially the weight I took home. My go-to spot on the couch was no longer my unwinding place with a glass of wine snuggling up to my husband, but one where I’d snack on a PB & J while my laptop kept my legs warm.

Doing this inordinately drained me. I had no spirit to give my eighteen non-biological kids day after day. This became a chronic problem because my students deserve first class and I wasn’t giving them that. I needed to take care of myself by giving time to all the wonderful things that once nourished me. I needed to feel my husbands hugs and hear the laughter that springs from family gatherings again. I needed to taste the goodness that comes from a fresh glass of wine while soaking myself in a hot lavender bath. I needed to be in nature and feel the sun’s kiss on my skin and see the beauty that comes from blooming trees. I needed to be with my friends and catch up on life. I needed to pray and be OK with not doing anything.

I need to do my life; all that it is when I’m not teaching. I absolutely love my students and what I do as a teacher, but it is not my whole life—so I choose not to give my work all of my time. I choose balance; giving myself to all the different things I love in life.

I realized the work I stayed late to do wasn’t due the next day. I had made up my own rules to make myself feel better in the moment not sensing the taxing impact it was having on my loved ones or myself.

So, my dear teacher friend, you’re not a crummy teacher because you don’t stay late at work. We have one of the largest professions in the country with more than 3.1 million teachers, which means that much more people have your back on that. So go home and sip your cup of evening tea on your front porch and feel the warmth of sunset before dusk hits. It’s OK to choose home and be with your crazy humans before the moon rises. You see, we give our best to our students by giving them a well-rested healthy us—not we got three hours of sleep and ate a PB & J before bed us.

You deserve to go home and truly be home. Your people at home deserve it—and the on average 3,000 students you’ll affect in your career life do too.

You’re already an amazing teacher. It’s time to take care of yourself.

image by Rustic Vegan @ therusticvegan.com