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.
