Living, Not Suffering, With Rheumatoid Arthritis
Lately, on my travels through the Internet, I've noticed a new term being used on health information sites -- including this one (look at me biting the hand that feeds me!) -- and it's been percolating in the back of my mind, making scritching sounds like nails on a blackboard. The term is "Patient Identity." I'm still jolted by those two words, something in my brain has trouble digesting it, because I don't have one. I'm not sure I ever did.
Who you callin' patient?
A patient is someone who is sick -- the word conjuring up images of weakness, feeling unwell, debilitated, frail. And of course, it can be argued that I am indeed sick. Clearly I have a disease, one that through four decades of dogging my every step like an annoying younger sibling has caused severe damage to my body, affecting my strength, stamina and mobility. I use a wheelchair, all of my joints have miscellaneous deformities and I see a doctor more often than the average person. Still, I don't consider myself a patient in a general sense, although I'm a patient of Drs. X, Y and Z. With the exception of periods of illness significant enough to require hospitalization or sitting still for a long time, I would not include the word 'sick' in a description of my identity, of who I am. It's not even part of what I am. The impact of the disease, having a disability and using a wheelchair is, but my arthritis isn't.
It wasn't until I sat down to write this post that I realized I refer to it as "my arthritis," rather than "the arthritis." Over the years, I have developed at proprietary view of the disease, made it into something I own and therefore something I can control. Which is complete nonsense -- I may be able to have some control over the symptoms through various coping strategies and medications, but ultimately, it is an unpredictable little monster that frequently attempts to take over. Being the ornery type, when faced with the choice between letting the disease run my life or fight back the only way I know how, I choose putting myself in control whenever I can. And to me, that means rejecting the label of patient. It means creating an identity that may include having health issues, but not being ill.
I Don't "Suffer" Voluntarily
"Patient identity" is usually accompanied by a secondary definition, the term "sufferer," e.g., as in "patient identity as an arthritis sufferer." I looked up the word -- it's always a good idea to start with the dictionary when you're tilting at windmills -- and found the following definition: "to undergo or feel pain or distress." All right, fair enough. The blasted thing does have a habit of making sure you're experiencing pain of various levels at all times, so I can accept that. There was another definition, though: "to endure pain, disability, death etc., patently or willingly" and that's where my argumentative side got going. Because I may have pain, but I rarely endure it willingly or patiently. In fact, my emotions regarding the pain run the gamut from mild annoyance through anger, despair and right on to moments of raging, white-hot fury where I spit in its face. However, despite a part of my brain muttering unintelligible threats in the general direction of the pain, I still live my life and in doing so, place the focus squarely on the positive. Most days, anyway.
And that's the thing that makes me question the terminology. There are times when yes, arthritis can make you "suffer," but the rest of the time you have to buy groceries and feed the cat, be with family and friends, do your laundry and go to work. Having had this disease for four decades, I know that arthritis is like the tide: it ebbs and flows. Some days, you're drowning in it and others, it just splishes around your ankles. Even on the days it overwhelms, you still have to feed the kids, be they human or four legged, and you very quickly learn to develop mental and emotional filters that muffle, sometimes even silence the pain. Well, until you're done with whatever you're doing and then it pounces and knocks you down.
Life goes on. Life has to go on -- there has to be something other than the disease to provide some balance to a life that could otherwise become mired in misery. What does it do to your ability to cope, to bounce back if you're enveloped in an identity of being sick, of being a 'sufferer'? So much of coping with a chronic condition and with pain is about choosing to focus on something else. When you wake up stiff and sore every morning, what gets you out of bed? When you've had the kind of day where you pop painkillers like they were peppermint candies, what makes you laugh with a friend on the phone? And so we read, we watch movies, we play with the kids, we cry, we love. We turn outward despite the disease clamouring for us to turn inward and we figure out a way how do it anyway. To take our lives back, at times wresting it out of the claws and teeth of the disease, emerging battered and bloody, but dammit, having proven one more time that although we may have a disease, it doesn't have us.
You can read more of Lene's writing on The Seated View.