I used to start the day with crying in the shower, hiding my face under the spray, silent tears of pain mixing with the water. Once the day got going, I’d build up the barricades again and distance myself from the pain, but in those first moments after waking, my soul was too raw and tender to take the assault. Every morning, I felt the full impact of my illness, the pain too much to bear, the despair of facing yet another day like this overwhelming.
And then one day, a friend reminded me that it isn’t normal to be in that much pain and that the meds I was taking were low on the ladder of rheumatoid arthritis treatment, so perhaps there were options. I had spent months enveloped in pain and had come to believe that this was just the way life was, a new normal called hell.
It turned out that there were indeed options, scary options. Drugs to suppress the immune system that came with the kind of possible side effects that made me want to run the other way. But I had to face it, had to look at what my days were like – or weren’t, rather, because I wasn’t doing anything except being in pain – and consider how much I wanted a different life, a better one. I had to ask myself what my life was worth. How much was I willing to risk to have days of manageable pain, days where I could work, go out with friends, be involved with my family, days where I could laugh again? And suddenly, it was a no-brainer.
We are raised in a culture that values stoicism, admires those who suffer bravely and never “give in to the pain,” but when you’re the one elected by perverse chance to do the actual suffering, you begin to question this notion. How sane is it to have your life stolen by illness and pain and not do anything about it? Will there be a standing ovation every time you go out in public? A medal at the end? Or just a quiet life of feeling crappy and crying in the shower, watching the world go by?
Years ago, I took part in a pain management course and learned about “the race” – the race between me and the pain. I learned that if you always wait to take painkillers until the pain obliterates everything, they will just barely take the edge off. I learned that if you’re always chasing the pain, you will always live in pain, that to manage chronic pain, you take the painkillers at regular intervals, even when the pain is not that bad. This allows you to stay ahead, focused on life instead of using every bit of yourself to cope with the all-encompassing pain. I learned that there is no virtue in managing (badly) solely on over-the-counter Tylenol or ibuprofen. Big pain requires big painkillers and I got introduced to codeine. Very quickly after this, when I excitedly held forth about this new wonder drug that allowed me to see straight for the first time in months, people who cared about me spoke to me very solemnly about addiction.
And that’s another reason we don’t take the kind of medication we need, isn’t it? Taking “too many pills” implies that some of them are unnecessary and taking unnecessary medication leads to addiction, right? The fear of taking “too many pills” is a valid concern if you’re a healthy person, but not so much when you have a chronic illness. Chronic, high levels of pain need to be turned down to a dull roar and the pills are necessary. And so, I cheerfully tell those who are concerned about my getting addicted that yes, I am addicted, but not to the pills. I am addicted to being able to lead my life, addicted to my Humira and my codeine in the same way that a diabetic is addicted to insulin. And nobody ever thinks of it that way, instead believing that taking pills is somehow giving in, as if it were possible to control your immune system and your pain levels with the powers of your mind.
Living with RA is living within the unreasonable. An immune system attacking itself is not reasonable, a disease that warps your joints is not reasonable and the kind of pain that makes you cry every day, can make you scream, takes away your sense of humor and will to live is not reasonable. Therefore, it is not reasonable to expect that you will live cheerfully using the same tools as a healthy person with a bit of a headache.
Four years ago, I started each day crying. Then I decided that getting my life back was worth the risk and was worth changing the way I think. Now, I am on Humira and I take big painkillers. My life is mine again.
Best of all? These days, I’ve been known to sing in the shower.
You can read more of Lene’s writing on The Seated View.