Why I Don't Always Want Doctors to Tell Me What It 'Might' Be

I am learning more and more that I process things of great matter in latency. I don’t become hysterical in the moment; I don’t break down at the first sign of decay.

It is a defense mechanism that has served me well over the years. It allows me to stay sharp, on-task, and quick when a provider has mere minutes to address months’ worth of symptoms, questions, concerns…

Find me in a crisis. I will not shake and I will not fall into pieces. I will be calmer than an unassuming breeze. It is a great habit for “getting through.” It is a terrible habit for “getting over.”

I never know just how long to stay in the moment — meaning I extend the hyper-vigilance beyond the confines of the situation. In clinic I do my own research (often too much), I write down my questions, I challenge theories about why, how, and what to do next. And that’s not an inherently bad thing; it builds rapport with clinicians, moves the conversation beyond the basics, and brings me care I feel more comfortable with. In short, being “in the moment” gives me some semblance of control in a part of my physical life that I have little to no ability to change.

But it is exhausting. The closest image I can paint is of a Disney hero Hercules when his strength is drained or Tinker Bell when she drinks the poison. They become a shadow of themselves, exhausted once the magic has poured out of them. Being so “on” often leads me to an almost certain emotional hangover the next day.

It’s all caused by a tricky little devil called possibility. It sneaks into clinic visits unsolicited and uninvited. It comes at the ends of, “How are you doing?”s and “Oh, I hear you’ve been singing more!”s. It’s after you confirm (individually) the exact dosages of all your medications, the last time you took them, and “are you currently sexually active?”s (which, spoiler alert, can either be the most embarrassing or depressing question I can start my visit with). But moving right along, let me be more clear.

My message to providers here is this: if it’s not happening, don’t bring it in the room.

I know this seems totally antithetical to the idea of keeping the patient included and informed, but really it’s not. Because the engaged, insightful patient learns. They research, they ask questions with words you didn’t think they’d know, they bring up other patients of yours whom they’ve already connected with before meeting you, HIPPA be damned! So if you come into the room and say, “It looks like this might be happening. We may have to do this” then let me stop you right there.

First, you used the word “might.” “Might” is a four-letter word in the healthcare world. It is a drug all its own that causes either euphoric hope or engulfing fear. It is too broad. It is too inconclusive. Because when you tell me a symptom I am having “might” be an effect of a specific cause, what I hear is, “well, we don’t really know at all (full stop), but hey! We’ve got a lot of machines and a lot of syringes and you have pretty good insurance so we’re gonna test this thing out of you somehow! P.S. It could also be this terrible thing, but we really have no clue so try not to think about that.”

I don’t hear what you’re intending. I don’t hear “this has some clinical/historical/situational/etc. evidence of stemming from this known cause and we need to rule it out. That way we will have a better idea of what to target to make X effect stop happening.”

No. I hear, “We don’t know, but it could be the worst. So we should prepare you for the worst.”

Now again, let me stop you right there. I’m a big believer in “under promise, over deliver.” I have no problem with setting the bar low and then working up to an ideal solution. I do, however, have a problem with internalizing possibilities that are medically within the scope of the condition but not realistically in the scope of my condition. For example, I did not know until recently that many people with hypertrophic cardiomyopathy need an open heart surgery at some point. It was always within the scope of the condition, but it was not (to my knowledge) in the scope of my condition. I can only say thank you to my providers for never bringing it up unnecessarily.

I have a problem when providers lay out all the possible causes for whatever out-of-this-world symptom I am experiencing because they don’t have enough information to form conclusive and mindful choices for the patient to chose from.

I think it boils down to the sweet but bitter, balsamic-y reduction that patients don’t all like possibilities. We like options.

I acknowledge the tough balance a clinician must walk between giving too little and too much information. I sometimes feel I come across as someone starved for details, statistics, something I can cling to, desperate to rationalize; that’s not an invalid thought. But I harken back to the old cliché and, if I may, amend it: “Mindful ignorance is bliss.” The clinician has a responsibility to be mindful of what the patient does and does not need to have an awareness of.

Bring me what I need to choose how to proceed. Bring me your personalized thoughts about my condition based on your knowledge of who I am and what my goals are for my quality of life. Because it is, after all, my life.

So, if it’s not happening, please for the love of my sanity, don’t bring it in the room. And if you yourself are without a clear direction, you don’t know what the cause is and you don’t know how you’ll treat it, or there isn’t anything conclusive so we have to try everything, I ask that you remember this:

When the medicine fails, be human.

Follow this journey on A Calculated Risk.

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