The Pain of Faking It
I'm smiling as I talk to the young lady across the counter from me. We have exchanged pleasantries about the day, the rare pleasure of a rainy and overcast morning in Southern California, and she just asked genuinely how I am doing. She knows that I have lung cancer, though I cannot recall whether I had mentioned my new medication. And there I am, still smiling at her, pausing for a moment while a fresh rush of pain crawls over my scalp as though a hot blade is peeling away the skin while salt is spread in its wake.
Trying not to show my pain
The sensation passes quickly and I try not to wince -- I am getting better at not reacting every time a chill makes me shiver, causing my scalp to tighten up momentarily where my rash is most sensitive. I am not sure whether she senses my silence as anything other than taking a breath, but for me, it seems overly long.
"I'm doing okay." I shrug, changing my smile to something more wry, and continue: "Relatively speaking." I decide to leave it at that. She's busy and there is nothing that I can do about the pain right now other than try to tolerate it.
I never quite know how much to share about how I am really feeling. There are some people, of course, who need to know. My oncologist, for starters, and those tightly associated with my care. My family has to have some indication of what I am going through -- the more we communicate about what we are going through, the easier it is to be empathetic or offer help to one another, or even get the space we might sorely need. But there is also a point where I feel it becomes an over-share, where the other party just feels helpless. That's when I might bite down and say, "it's going to be all right." Because I believe it will be, generally speaking; all of these things eventually pass. And I don't want to keep talking about it.
From annoyance to anguish
This rash has spread quickly, beginning as an annoyance and turning into a menace in less than 72 hours. I have tried every lotion, ointment, and spray that I could get my hands on, first to treat it as acne, then to treat it as a sun or wind burn. On the plus side, it has taken my mind off the aches in my joints and the strained muscles in my back and arm. For the first time, I find myself thinking about how great it would have been if my hair had just fallen out and I could actually get something therapeutic slathered all over my head. Instead, I am left dreading the next time I need to shampoo.
It has not been my everyday experience with cancer treatment. Most of the past three and a half years have been more physically tolerable, even when bogged down with fatigue or nausea. But there are times when basic functioning is difficult and faking it is near impossible, and that in itself takes a toll.
Smiling through the pain
It all ties into the stigma of lung cancer, the stigma of drug use, the stigma of being chronically ill or disabled. It is not that I am ashamed of my pain, but it becomes a burden to carry. And I have endured the looks in the pharmacy, the delays from my insurance company, and even medical professionals who second-guessed what I needed to simply feel close to normal or even safe. Keeping some of that pain for myself, then, has become both second nature and part of my natural defense system. Still, I try to smile, though it hurts no less.
Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.
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