When a Doctor Says, 'I Don’t Know'

“I don’t know.”

This isn’t a sentence you typically like hearing from your doctor, especially when it ties to something so significant as how your chronic condition works and how to best manage it.  In my case, it was followed by, “I could take a guess, but I’m just making up an answer. The unfortunate truth is that your situation bumps up against the limits of our current medical understanding.”

Trying to get my mind around my newfound condition is tough enough. This added challenge of telling me the problem isn’t well understood and also has no solution is an extra smackdown.

In my case, I was originally diagnosed with fibromyalgia, a condition with only a recently emerging body of knowledge that’s still woefully incomplete, and no cure. The diagnosis impacts everyone differently but still has an established pattern of ongoing pain and impacts to digestion, cognition, immunology, sleep, and energy, so it’s not a pleasant end result of my two-year medical journey. This has recently been compounded by another emerging and unclear problem. My connective tissue has become more susceptible to injury, and then resistant to healing. There’s no term for it, just a problematic pattern. Those injuries are real and they hurt, and the fibro magnifies the pain. So, this isn’t fun, to put it mildly.

When the doctor candidly acknowledges reaching the boundaries not just of his knowledge, but of medicine’s, there is the deeply emotional recoil, such as frustration, despair, and helplessness.

Stark reality emerges from this vagueness. Partly, it’s that I’m in for a rough go of it. But ironically, the lack of understanding also represents certainty. There’s a certainty in not continuing to search for the “real” diagnosis, the “true” root cause, the treatment regimen with a high degree of success as established by those vaunted multiple longitudinal, double-blind, peer-reviewed studies.

In this moment when the doctor admits his limitation, Western medicine isn’t futile. It’s merely limited. Granted, that limitation has a huge impact on me. But there is still value in the conviction of the diagnosis, the scientific certainty about the current lack of cure and unlikelihood of significant pain relief from various treatment protocols. It allows me to see my situation for what it is, in all its messy glory. In a sense, I am given a huge gift: a choice; a choice between despair and comfort; ignorance and knowledge; helplessness or influence.

I can’t expect a cure, or fully resuming my prior life, or ever becoming pain free. Frankly, that sucks. I’ll acknowledge it and occasionally dwell too long on it. But, as with anyone and the various tragedies we endure over our lives, I can choose between surrendering to that grief or learning to accept it and move on.

Choosing to move on brings new challenges, but I can focus on leveraging the information that exists and then methodically experimenting to find my own ways to best manage my conditions. I’m now in charge of my attempts to be as fulfilled and happy as possible. It doesn’t mean I now have total control over my situation. But now I can have greater influence. It means I’m driving this bus instead of being a confused passenger, blindly going from one stop to the next. It means I can explore how to maximize my situation, not wondering and worrying about the next shoe to drop.

This can sound great, and is easier said than done. But the biggest gift of being told by a doctor, “I don’t know,” turns out to be the gifts of ownership and hope.

For now, I’m just taking this life and converting my hope into action – one step at a time.

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