Waking up in pain. Going to bed in pain. Never knowing if tomorrow's going to be the day it comes back with such force that your life is shattered, sidelined again while you put everything on hold, while you find a treatment that works. Hoping you'll find a treatment that works, having waking nightmares in which you don't. No longer remembering the time Before, back when your body was your own. Fighting, always fighting, to live, to get better, to not lose function, to find hope, somehow. Living with rheumatoid arthritis is living with a relentless assault, not just on your body, but on your mind, as well. Sometimes, your biggest challenge is to not give in, to stay focused, to stay sane.
Certain studies show that people who live with RA have a tendency to "catastrophize," in other words, to assume the worst, to interpret feelings and events as worse than they are. I have issues with those studies, because after all, don't each of us get to assign an emotional value to what happens to us, regardless of whether other people - healthy people - think we are drama queens? But beyond that quibble, this is what happens to you when you live in the equivalent of a disaster area, a situation where you never know if the sky is going to fall. The unpredictability of daily life with RA makes it really hard to look at the bright side of life.
But you have to. The choice is simple: cope or get lost in the darkness. And in order to cope when it is dark, you need to practice, every day, even on good days. Especially on the good days, Because it creates a habit, a mental discipline that integrates coping mechanisms in the foundations of your core, making them automatic, reflexive, instinctive. You may not be able to control what happens to you, but you can - eventually, most times - control how you react.
Counseling helps. Finding a therapist who specializes in cognitive behavioral therapy can be a godsend when you live with a chronic illness like RA. This type of counselor can help you change the way you think about your disease, about your life, about your capacity for strength. It was with such a therapist that I learned about mindfulness and in mindfulness, I learned about 12 words that changed my life: there is more right with you than there is wrong with you.
And that's what it's about. Remembering the other side of the coin, that you are not wholly about RA. That it is merely part of your life, part of what you are, but only that, a part. It's about not getting stuck on the days where you feel sorry for yourself - sure, allow yourself to fully experience the sadness, the part where you want to stamp your foot like a five-year-old if only it didn't hurt so much, but once you have embraced the tantrum, leaving it behind and moving forward. It's about remembering that you are not helpless, that you have tools to get out of the trap and the willingness to use them, whether they are extra painkillers, a hot bath, a day off spent lying on the couch watching costume dramas or the phone number of your rheumatologist. It's about practicing a relentless sense of the positive, about always asking what can I do about this, what can I learn from this, making even the worst of it constructive and creative. It's about turning the prism from the dark facet to one that reflects light.
The hardest thing I've ever done is learning to find hope, even when it's darkest. It sometimes takes a while, sometimes requires mental acrobatics worthy of a performer from Cirque du Soleil and every now and again, the grain of hope, of positive, of maybe that I find is logically ridiculous, a tortured Pollyanna moment, but that doesn't matter. What matters is to find it, because it is that first step out, the first step to remembering that there is help out there, that you are not doomed, that you are not alone and that there is more than RA to your life. And because you have practiced this, on good days and on bad, you have the tool to inch by inch get out of your head and as you begin to see the beauty around you, you remember who you are.
You are more. And that's what keeps you sane.
You can read more of Lene's writing on The Seated View.