While I’m very interested in the “why” behind the conditions I live with, I’ve never really gotten trapped in the “why me” that can be so common. Maybe it’s a spiritual practice that values acceptance, or maybe just my GenX nihilism, but I don’t expect some kind of karmic answer as to why my body doesn’t work the way I want.
Yet as humans we’re hardwired to search for meaning. We have a profound need to understand, to solve even a subconscious “why?” even when something may not have an answer. I don’t think I realized I was still searching, until I started understanding, standing in front of a classroom.
I’d given a brief medical history, described the injury and resulting surgery. I started discussing the symptoms, pointing out the objective signs (every single item on the Budapest criteria, the reason I’d been invited for show-and-tell). I stumbled over medical terms I’ve read but never heard pronounced, trying hard to use the clinical language I thought expected for a first-year didactic class. But somewhere between “hyperalgesia” and “dystonia,” I started talking less about objective signs, and more about the subjective meaning of those words.
How I was becoming self-conscious about the changes in my hand, and that the aesthetics of it were sometimes more worrisome than the somewhat-limited function, as shallow as that makes me feel. How – at the same time – I didn’t find the objective signs as distressing, because they were proof that it was real, and not all in my head.
That as a middle-aged woman with a history of anxiety and a pain complaint, I don’t expect to be taken seriously. That this made me less likely to disclose the wackier symptoms I was experiencing after surgery. That I didn’t understand that this extreme pain wasn’t normal, and that because of that I felt like a crybaby who was simply too weak to properly rehab a broken elbow.
I shared why I wished one particular clinical encounter would have gone differently, and what I hoped they might do instead. Why pain science education was more helpful than even the best clinical encounter I’d had. Why my new mantra was “pain without meaning, pain without meaning…”
And as I was standing in front of these future clinicians, chanting that my pain had no meaning, I suddenly realized it did. That I was giving it meaning right there, in that room. That the first time these providers see CRPS won’t be in an overbooked clinic with a frightened, needy patient, and that this means someone else might get an early diagnosis. A better prognosis.
I was sharing more than simple clinical signs during my show and tell. I wasn’t a textbook or a powerpoint slide. I was the whole human attached to the limb, messy, complicated, and in pain. It wasn’t just these students’ first encounter with a rare disease, it was likely the first time they heard a patient voice in quite this way. The pain suddenly felt like it had a purpose.
I took up more than the 15 minutes their education allots to the disease, but still didn’t answer all their questions. I did, however, start answering some for myself. I’m not looking for the answer to “why me,” but I’m still a human searching for meaning. It just turns out I’m finding it by finding the answer to “what now?” instead of “why?”