The Taboo of Talking About Remission in Rheumatoid Arthritis
"Are you in remission?"
I cannot answer. My throat is closed, the words caught somewhere deep within. I can't even answer the question in writing, instead starting the sentence and then deleting, starting another one, phrased slightly differently and delete that, too, before I even get to the part about the R-word. Just writing it in that first sentence of this post makes me feel all antsy and uncomfortable. Those nine letters positively pulse off the page, making me feel as if I am tempting fate, calling attention to myself, inviting disaster. Because we all know that the flares are out there, don't we? Know (sort of) that all that's needed for one to remember that it has a life -- your life -- to take over is saying that you're doing okay and the next morning, you won't be.
I once called it living under the shoe. Living with what Sara Nash a few weeks ago called "the specter of rheumatoid arthritis," the unpredictability of this disease, never knowing when the next flare is going to happen, but knowing that it will and every day, beating back the fear that today will be the day the other shoe drops.
Feeling good can be terrifying. If things are not going well, at least they're right there, in front of you, in full view and you're not waiting for it to happen, constantly scanning the horizon within for signs, for the wrong kind of twinge, for swelling, for that soggy feeling that comes with a flare. But when you find a medication that works for you and start getting your life back, making commitments, taking on more responsibilities, making plans not just for today or this week, but a couple of months down the line and maybe even next year, the fear grows even larger, because now you have something to lose. Quite a lot of something.
The longer your RA's suppressed, the more you expand your life and the more attached you grow to all the parts that make up your life -- the To-Do List that grew because now you can, the people who entered your life because you have energy to be with others. And part of you is getting used to feeling good, while the other half of you is constantly freaking out because history shows that you shouldn't get used to feeling good and before you know it, you're in a really strange place where you have conditioned yourself to not expect good things to happen. Where if they do, you twist yourself into mental and emotional pretzels, superstitiously knocking wood whenever you mention that things may not be entirely terrible anymore.
And you never, ever say the R-word. Because if you do, it is like calling the monster, jumping up and down, yelling here I am, come get me! It's had its claws in you before and you will give anything to not go back there. So you try to ward it off and not just by treating every wooden surface as your own personal drum kit, but by saying your RA is "managed," that the "meds are working pretty well" and you always add so far at the end of that, because saying even something so vague makes you hear the wing beats of the flare whomping ominously. You don't commit to saying the words and have trouble committing wholeheartedly to decisions, to plans, to people, because committing, settling in, feeling safe is just asking for it, isn't it?
But if the meds are working, if they have given you back your life, if advances in medications like the Biologics have changed the prognosis of RA, could possibly allow you to live well with the disease merely muttering in the background for years, do you not owe it to this new chance, to yourself to not live in fear? To instead dive into the world, to embrace the good fully, to face your fear and deny it dominion over you?
Easier said than done, to be sure -- almost every day, I beat it back and remind myself of the litany against fear from the novel Dune by Frank Herbert that starts "I must not fear; fear is the mind-killer..." and it helps. Every day, the good carries a bit more weight, every day the joy in life makes it a little easier and sometimes, I even forget to knock wood.
I still never say the R-word, though.
You can read more of Lene's writing on The Seated View