Hidden disability surely seems a misnomer for those of us affected by them. One might ask, hidden from whom? The answer of course, would be people who don’t know you… the public at large I suppose. Surely, the people who do know you, particularly loved ones or close friends, have seen this “hidden” disability, even if only in your lack of presence at some night out or an important event. Sometimes we, the disabled, will either feel the need to extrapolate upon our limitations or perhaps defend them. Most likely we’ll regret having done so, because it’s extremely difficult to communicate something so personal without feeling we’ve either overstated our case or apologized for something we have very little to no control over. My least favorite act is making up some bullshit excuse for my absenteeism or tardiness for the simple reason of not wanting to hear the words of “I didn’t feel well,” or “I was just too tired” escape my mouth for the umpteenth time.
My own hidden disability is an aching, throbbing, sometimes knifing, burning patch almost two square feet in total running from a few inches below my belly button to a couple inches above my sternum and wrapping itself around my entire left side, terminating at my spine. There are patches within the greater tract that are less painful, and there are those that scream like scantily clad ingénues in smutty, cruddy, done-in-by-your-buddy slasher films – is there any other kind? Thankfully, my ingénues aren’t hollering incessantly, rather, the never-ending form of pain comes in the dull, pulsing ache in the side accompanied by a strange metallic taste in my mouth, as if somehow the pain bleeds over into another sense, that of taste in this case, as if I’m biting into an aluminum can.
If you read my “highly motivational” exercise blog (quotes indicating more of a hopeful appraisal rather than an objective one admittedly), you’ll see that my most successful coping mechanism has been cardio exercise – pretty goddamned intense cardio at that. It literally saved my life, and if you’re suffering from chronic pain, it can save yours too. But that’s another subject for that other blog – there will be endless overlap to be sure, but this blog is primarily dedicated to the day-to-day struggle of coping with constant pain, or any “hidden” disability.
One of the more daunting aspects of a pain disability is the “hidden” part. At the outset, you wouldn’t know there’s a thing wrong with me… I can do practically anything I used to do, as long as I don’t do it for very long, and I can lay down soon after. The reality though, is that the massive fatigue, and of course the physical pain itself, curtails many activities. Neurological pain, the kind I have from a horrific case of shingles, is a bizarre adversary… if the task you’re engaged in requires enough sensory devotion, like riding a bike, or even driving a car, the severe pain uptick might not occur until you’ve pulled over, allowing more space on your neural highway to now process that pain. When you’re in the middle of something that commands multiple senses, the pain waits at the onramp until it can latch onto your neural highways and be recognized. Then wham, you better lay your ass down, or at least sit the fuck down in a hurry.
At the most basic level, a hidden disability makes it more daunting to ask for a seat on the subway or bus; on a more complex level, a hidden disability requires explaining. If I had a cane, many people in New York City would offer such seats, I know because I’ve seen it happen – we’re actually a pretty decent bunch, our abrasive reputation aside. The most challenging adversary to those with a hidden disability is perception: if your disability is in fact hidden, you must be taken at your word, and sometimes you may even be chastised silently with a look, or on occasion challenged outright by a challenging phrase like “you look okay to me.”
None of which is to even remotely imply that a hidden disability is more egregious than a more conventional, visible affliction, obviously that’s not the case at all… it just presents its own unique challenges and obstacles to those affected. In fact, I feel very lucky that I can “pass” as disability-free and participate (on a very limited level) in many of the things I love to do, such as going on a hike or riding a road bike, etc. I’ve found that regular cardio not only helps combat the depression that accompanies chronic pain, but provides an endorphin release that simulates an almost pain-free hour or two post workout, allowing me to briefly revisit sanity as I used to know it for those blessed minutes per day. More importantly, cardio fitness helps my body cope with intense pain, lowering my heart rate and blood pressure significantly from the post-chronic pain spike that occurred 15 years ago.
That’s enough of an intro for now, folks. In my next blog, I will discuss my upcoming surgery that will see me implanted with a DRG (Dorsal Root Ganglia) Stimulator. I’ve already undergone the 5-day trial installation and had dramatic results in my most painful area, so I will discuss that and more. Until then, good people, I feel your pain, well okay, my pain… I feel my pain, but in so doing, I greatly sympathize with and understand yours. Hope you visit again soon.