Writing through the pain
This is about my life with an invisible disability.
Hey, y’all. I want to start this post by sharing a trigger warning similar to the one that I shared with my wife last week, before I let her read this piece.
If you love someone with chronic pain or another invisible disability, or have experienced said pain yourself, this may be a triggering read—I don’t sugarcoat and I don’t prioritize a “happy ending” over the nuance that is necessary to get my points across.
That being said, if you do choose to read, I appreciate you. I’ve been trying to get these words out, since 2020.
For me, chronic pain feels like waking up with searing pain shooting directly through your spine.
It feels like somebody is tightening a rubber band around all the tendons at the nape of your neck.
It feels like someone is slowly and constantly pushing an exacto-knife into the flesh between your shoulder blades.
It feels like knowing that your primary care physician either can’t, or won’t, help you.
It feels like the most painful part of a deep tissue massage, except it lasts for hours when you’re supposed to look friendly on camera during zoom meetings.
It feels like spending hours recovering when you’d rather be spending time with friends.
It feels like having to choose between preventing a flare-up and going above and beyond for your family.
It feels like praying that you’ll sell enough books, and art, to be able to get as much rest as you need—if there is such thing as enough rest.
It feels like scrolling past Instagram videos of weights that you used to be able to lift.
It feels like people who don’t care to understand your pain telling you to stay positive.
It feels like not knowing if you’re more tired of the pain itself or trying to make people understand your pain.
It feels like people assuming that you haven’t gone to three PT’s, two specialists, two primary care physicians, and five urgent care facilities.
It feels like having to call your wife so that she can come downstairs and pick you up off the floor because you can’t stand up on your own.
It feels like consciously nurturing a caffeine addiction because it helps you to manage the pain while you manage your life.
It feels like thousands of dollars on new mattresses and rehabilitative equipment.
It feels like people assuming that your entire life doesn’t revolve around pain management.
It feels like having to take off work for a month because you can’t even sit up by yourself, even as your wife is recovering from childbirth during postpartum
It feels like not trusting yourself to start another essay because you don’t know when you’ll feel good enough to finish it.
It feels like worrying about leaning the wrong way when you’re playing blocks with your daughter, because leaning the wrong way for 30 seconds might mean that you have to work from bed tomorrow.
It feels like ordering another product, not because you think it will fix you, but because the possibility of it fixing you makes the pain more bearable for at least five business days.
It feels like trying to remember how many years it’s been since you had a pain-free day.
It feels like self-isolating so that people don’t think that you’re an asshole.
It feels like working from the same desk chair, at the same table, every day, because you don’t know if you’ll be able to find a chair that gives you the support that you need at a coffee shop or co-working space.
It feels like lying when people ask, “how are you?”
It feels like knowing that the pain medication that your urgent care provider assigned you won’t work before you pop the first pill.
It feels like wishing that your disability came with crutches, or maybe a missing limb, so that you didn’t have to tell everyone about it yourself.
It feels like being both remarkably strong, and terrifyingly fragile.
It feels like craving the intensity of a hard workout, and the clarity that would follow, while knowing that you can’t afford the risk that accompanies said intensity.
It feels like a never-ending search for the silver lining.
It feels like waking up and pushing through again, because what else is there to do?
It feels like resigning yourself to finding distractions because you’ve lost faith in the existence of solutions.
It feels like shaming yourself.
It feels like questioning God.
It feels like spending hours trying to find the right way to articulate your pain, because if people understood, they would treat you differently…right?
Thank you for reading this—even if it was hard to digest. I hope you know that there are people living with invisible disabilities all around you. According to the CDC, 61 million adults across the U.S. identify as having a disability of some kind, and about 10% of those are invisible disabilities. They impact people of all ages, and can drastically function how a person functions. The sentiment “be kind, you never know what someone is going through” is based in fact. Thank you for reading.
Thank you for being here. All of these words are from the heart. If you care to support my work as a writer and creator, consider purchasing a print from my art shop.
I see you. I hear you. And I believe you. One sufferer to another, I am so sorry for your pain and for all of the adjustments you’ve had to make in your life. It isn’t easy to live this path. But it is always comforting to know that there are other people who know, who understand, and hold space for all the grief that comes with chronic illness/pain. I appreciated reading of your experience and I will continue to hold hope for our healing, even amidst all the surmounting odds. May you continue to find small ways to help ease some of your pain, and draw strength from the love of your family.
Thank you for this, you wrote what I want to tell everyone but never seem to be able to 🙏🏻