If you live with chronic pain, you are not alone. Pain affects more than 76 million people in the US, more than cancer, diabetes and heart disease combined. It is estimated that conditions involving chronic pain cost the US economy more than $100 billion a year in healthcare expenses, lost income and lost productivity. And that’s just the money part of the equation.
Six years ago, I lived within a flare that burned so high and so bright that it consumed my life entirely. It was like living inside a ball of flame, like being locked inside a torture chamber with several excited apprentice torturers practicing their craft, like being eaten alive by something with very large teeth. I was drowning in pain and turned inward, more exhausted each day as a flare demanded more of my physical and mental resources.
As my energy dwindled, the losses continued. Loss of function, of ability, of independence. And then, as I lost the capacity for lighthearted conversation, for laughter and for spending more than an hour or so at a time with even the people I loved the most, I started to lose them, too.
When you are in the middle of a crisis, lost in a fight against your own body, you stand still, wrapped inside the battle, but for the rest of the world life goes on. There are times where it seems as if everyone moves in fast forward, busy lives taking over and oh, has it really been three weeks since we last spoke? Yes, you say. Yes, it has and I am bereft and ill and as I watch my life slip through my fingers, those I love slip away, too.
People don’t talk about the cost of pain much and when they do, it tends to be the numbers, the money. We don’t talk about the social cost of pain and maybe it’s because they - the healthy, able-bodied ‘they’ - believe it cannot be quantified. But this is not so. I can count the losses still. One relationship, that certain someone with whom I thought I’d spend many more years. This job and that, this many friendships, this many outings, this many dinners to which I was not invited because I couldn’t go out anymore. And when you can’t go out anymore, when the world must come to you and the world is busy, the attrition starts. Slow at first, just the periphery of your social circle slipping away and you don’t notice, because it is the outer edges that are no longer there and because the pain is all around you, you can only see as far as your nearest and dearest. And then it accelerates and before you know it, some of the nearest and dearest are still dear, but not so near anymore. Before you know it, not only aren’t you going out, but the phone doesn’t ring anymore.
And then, if you’re lucky - and we increasingly are in this age of Biologics - something works, something clicks and you get better. It takes a long time, but the pain subsides and your strength returns and as you build your life back up again, you look around and reach out for those who were there before. And sometimes, you find that they are gone for good and now you must grieve not only the loss of this joint and that, but the death of feiendships you thought were for the rest of your life.
And no one talks about this. That chronic pain, big enough chronic pain, is like a living death. Those who love you try to stay, but not all can and so they grieve the loss of you and move on and there you are, alive but gone and it is the weirdest thing I’ve ever felt, this presence that to others is an absence.
You get over it. You grieve - a delayed grief because before you were too busy dealing with the pain - and then you, too, move on. Lighter when you didn’t want to be, feeling as if a part of you is missing, but move on you do and eventually, you find other friends, maybe even another love and your life is there again. Different, scarred, but glorious all the same and you dive into it with the joy of a dolphin playing in the surf.
But some days, every now and again, the loss of those who left haunts you still.
Lene is the author of the award-winning blog The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.