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

45 thoughts on “Chronic-Pain: I’m Done Apologizing For Not Showing Up

  1. Girl this is amazing. Your line about being a teacher is perfect. I have said before to people. Do you think this is where I want to be ? I love my job. Worked hard as hell for it so no this is not what I would have chosen !

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  2. I’m glad you know how to put yourself first. It’s so important when the majority of your waking time is spent feeling pain, fatigue, and everything else draining. <3

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  3. Such difficult emotions, so eloquently spoken. I’m sorry you’re facing new diagnoses and their consequences. I’m also a rare zebra who collects diagnoses like pokemon. I’ve felt so many of these feelings myself. It may have risen from difficulty, but I think it’s great you’re ready to choose yourself. I hope it leads to an improvement in symptoms and a new determination to more forward.

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  4. I am not sure if there is a cure for your suffering, but I think you really do not need to apologise for your down time. It is your body and mental health so if you need to rest, you rest. All the best to you and take care. PS: Thank you for liking one of my posts too.

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  5. I felt like you made this for me. I teach SPED and have already missed 5 days and it’s barely November. Now, I’m looking at my 4th surgery for the year, on top of more appointments for some life threatening issues (like you). I always feel bad for leaving or taking a day off work.

    Thank you!

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    1. I am so sorry. I pray you feel better soon. Be kind to yourself…..a teacher always reminds me every morning I come in early that if I were to walk out those doors or something were to happen to me, they’d post my job the next day….it’s hard to hear, but it’s truth. Our jobs are replaceable, our life is not.
      I do hope your surgeries go well, fellow spedtacular teacher ;) and that you can find rest in knowing it’s OK to miss if you have to. (hugs from afar).
      -Sav

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  6. Been there with the “be grateful” or the preppy “at least you still have…” people, NO!!! Walking the path of M.E./CFS (housebound now) and I hear you on all you shared so beautifully. Thank you Savannah for a glimpse into your world, sending gentle love for your journey. ❤ xx

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  7. My mother has psoriatic arthritis so though I don’t personally have chronic pain, Ive watched someone I love suffer it and struggle and change their limitations over time. It sucks. For everyone. Go ahead and stay in is what I say. I wish you some restful nights

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  8. Thank you so much for sharing your story. I can’t imagine what you must be going through. You don’t owe anyone any explanation or excuse. Give yourself some grace daily ♥️

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  9. Sav, first of all, thank you so much for following my blog yesterday! I’ve been reading yours…and I’m following you in return. You are a warrior, Sav. One of the “Janice people,” and I have been deeply taught by you today. In the midst of suffering, sometimes it seems that all we can do is put one foot in front of another, even for days and weeks at a time. But in the pain that you describe and live with every moment, even that has to be more difficult than most of us can fathom. Your honesty, your authenticity, your pure “guts” have moved me immeasurably. So many of us bloggers write so that we can maybe make a difference. Well, you do make a difference in sharing your incredibly difficult life with the world. And in lifting up the crazy graces that sometimes show up to keep us going. May you find joy where you least expect it and endurance when you most need it. And may the love and strength of God bring you through to the next moment, the next day with some peace.

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    1. Hello there, your comment has quite literally moved me to tears. I cannot thank you enough for taking the time to write this to me and encourage me and lift me up. I often wonder if I’m making a difference sometimes in my writing, but it means so much even if I move just one person. God is good and sovereign and I am trusting him in this process. Again I thank you so much for your kind kind words and I hope and pray you are having a magnificent and lovely weekend Friend. Hope to hear from you soon again.🥰💚

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  10. I couldn’t have put it any better. It’s always so hard to put it into words for people to actually understand. How every fibre of your body is protesting but people don’t. Your post summed up how I feel these days. I am done apologising.

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  11. I see myself in in you Savannah and I feel your pain – literally. Thank you thank you thank you for your courage to speak so boldly about chronic illness and the day to day struggle that you go though. The journey is long and difficult. It surely isn’t something one chooses for themselves. I struggle so much with missing the woman I was yesterday and all the things I cannot do today. You have sent out the war cry, that we who are suffering with you, are not strong enough to do ourselves. We are right there with you, we support you and we appreciate you immensely.

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    1. Hi friend. Thank you so much. Missing every day that goes by, the bubbly, energetic self that I was….I’m irritable and showing myself grace has always been a struggle. I pray you have a restful weekend. <3

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  12. God bless you! I know it’s nothing like you but I do suffer every day with back pain. I can’t do ANYTHING without it causing me excruciating pain! No one seems to understand! That makes me feel like they think I’m lying. They say walk exercise. They don’t understand it’s too painful! Your story is a very good read! I pray you get some relief somehow!! I know you’re not supposed to question God but sometimes when it’s so bad you wonder WHY? Hope your day is good!

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  13. Thank you for writing this. My wife has lived with chronic pain for years and I gladly passed it on to her. I’m so happy she has learned to take care of herself and say a simple “no” when necessary. Listening to one’s own body is one of God’s gifts.People, no matter how well-intentioned, fail to appreciate what those with chronic health issues go through on a daily basis. Take care!

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  14. Savannah! Thank you so much for writing this and sharing your story and your raw emotions. I totally resonate with you, I felt like I was writing my life! I was diagnosed with NMO 12 years ago, it’s changed me and my life in ways no one can Truly understand until they walk in our shoes. Hang in there, remember, you’re a warrior!
    Xo, Sandra 💚

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  15. Excellent post, really stirred my heart. “And for pete’s sake, we don’t always have to be grateful it’s not worse.” So true!
    Thank you sister Savannah, for this glimpse into your day.

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  16. Savannah, thank you! So well-written. I love your line “people need to understand that saying no takes just as much courage as saying yes.” I struggle with that myself, and I applaud you for writing it, for sharing it, for living it.

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