Shifting Self-Care for Illness from 'Rest' to 'Work' Really Does Make All the Difference

I wrote this essay at 1am on Saturday, before I finished the novel. I can now say OMG you must read this novel because of it's beauty, honesty, humor, and thought. I miss these characters, but am thankful they were brought into my life by chance (A wish list fill by Teresa, who's note I carry in my house sweater pocket).


In the middle of reading my book of the moment (“The Fault in Our Stars” by John Green, who’s writing is so beautiful, funny, and sad at the same time, I’m glad this book will throw more money at him to keep writing beautiful books) and a line jumped out at me that got me thinking.  

And yes, dear reader, I have actually paused reading said book to write this, propped up in my bed at a quarter to one in the morning. 

Basically, it goes something like this: Hazel is asked if she’s going to Support Group, and she recounts: 

“…but I was really tired from a busy day of Having Cancer, so I passed.”

The thought that entered my head was this:

“I never thought of having a chronic or terminal illness as work.”

But if you, like me, are unfortunate Side-Effects (as Hazel calls us) of Disease, then you know just how much work it is. Oh, it may not look like much on the outside, and if you met me in the street without having read or seen my vastly transparent digital life (side-note: is there such a thing as too much authenticity?), you would have to be as hyper-observant as Sherlock Holmes (and here I’m thinking more BBC Sherlock than any other, though I do enjoy a good Rathbone Sherlock from time to time) to know there was anything less-than-healthy about me. 

And since I’m pretty sure you’re not Sherlock, nor any of his contemporary incarnations, I’ll lay down the clues for you, since I’m in a helpful mood: I walk with a slight limp, grimace when I sit or stand up, and move constantly. In fact, that is the one clue my mother can pick up with alarming speed, though that might be from prolonged exposure to, well, me. My twitchiness and inability to sit still increases in relation to my pain level, and this can be quite annoying, I’m sure, when you’re sitting next to me. I don’t notice it myself, but that’s probably because I’m trying to distract myself from noticing on purpose. 

Quite a lot of acting goes into Living With an Illness That Will Never Leave — you learn to project smiles and excitement when you feel like a zombie out for brains, and resist the knee-jerk reaction to answer the question of “How are you?” with the truth (which would probably make the asker uncomfortable — and that’s okay, since most people aren’t equipped with how to respond when someone admits unrelenting pain and fatigue coupled with Medical Drama when all you wanted was a good or alright in response). 

But acting isn’t the only work you do. I currently have 5 prescription bottles on my nightstand, with another tucked away inside, one in my purse, one I haven’t filled for years since I’m uninsured (America: get your act together, please!). I need to keep track of refill dates and how many refills are left, then check when my next doctor’s appointment is to make sure I won’t run into any bumps (I usually do, as one of my medications isn’t taken at the high dose, normally, so pharmacies are always running out of it). I have to make sure there is a back-up dosage of medication with me at all times in case I go out somewhere and am too fatigued to make it home — friends and family have been known to stay on the phone with me to make sure I stay awake. 

Then there’s the simple act of Living With an Illness. Going up and down stairs is not fun for me in the least, and yes, person watching me hit the elevator button, I am going to elect to use it to go up one floor despite appearing young enough to not need to. 

People love to judge with the eyes. 

This is where I roll mine. 

There are the times when you’re asymptomatic, or in a flare up (affectionately misspelled during my times as Flair Ups, which sound so much more fun, don’t they? Also, there is no spell check on my cell phone and computers usually make me sick when rolling with the waves of pain) when all I want to do is crawl under my covers and die — I’ve been known to punch my legs (the main source of nighttime OMG Kill Me times), pull out hair, slam my fists into the mattress, and so on. When all I can do is sit on the couch or lay in bed, caught between asleep and awake, unable to fully commit to either. 

And even on good days, like today, where I managed to run a few errands, play with paint a bit, and smile more often than not, I come home to rest my body because it simply doesn’t want to move anymore. Like it’s given up on it’s one and only job. Get it together, body! 

How many times have I berated myself for not getting much done in a day? How many times have I gone to sleep feeling guilty because I only managed to cross one or two things off my to-do list? 

When I go back to examine what I did that day, I see large holes of time used for what? Nothing? Rest? An impromptu Netflix-induced television marathon? I beat myself up even more for this unaccounted for time in my day, feeling it could have been put to better use. 

But if I really look at it, I was probably spending a lot of time busy Being Sick. 

Read that again. Go on. 

I never really considered Being Sick as busy or something requiring more of my time. I’ve often fought against my limits, measuring my output to that of others who are Not Sick, striving to achieve more if only to prove my worth to society. Shifting self-care from the Indulgent column to the Work column doesn’t change the inherent facts of the case, simply allows for a bit more slack to be thrown my way when things haven’t gotten done and I’m still in my pajamas at 8pm, having watched four episodes of “Hoarders” as a way to tell myself my apartment doesn’t really need to be cleaned. 

In fact, re-organizing Being Sick to something you can possibly be busy doing gives it the proper time it requires in a daily schedule to stave off those asymptomatic times. Ask a bunch of us, and we’ll tell you of times we’ve bounced back a little too quickly simply because we were feeling a bit like complainers. 

Which is my cue to stop typing this essay and get back to reading, as I only just removed my wrist brace and typing 1200 words was probably a bit too much, too fast. 

I’ll be busy Mending tomorrow, and that’s a hard job all by itself.