Monday, January 28

Disability: Having A Sound Bite

Gasps greeted me as I walked into the exam room.  "Oh my- what happened to you?!"

Caught entirely off guard, I struggled for a response, but blanked.  There was an awkward pause in the room.  The problem was...
...that nothing was wrong.  I had just acquired a new assistive device: a forearm crutch.

The crutch is new, foisted on me by my physical therapist after he discovered how weak my right leg can get with exertion.  Standing for long periods of time or frequent sudden direction changes fatigue my thigh muscles quickly on bad days, and those are things I can expect to have to do frequently in my work.  So the crutch, just one, held in my left hand on days when I need the help.  I have a complex relationship with it.  I appreciate what it does for me, supplementing my weak leg and greatly augmenting my physical abilities.  On procedure-heavy days, it's a game-changer for me.  But I also hate it.  It is cumbersome, it occupies one of my hands, and worst of all, it is visible

It's hard to feel like evidence of my condition is on public display.  Before this past year, I had no idea how much courage it takes sometimes to go out in the world as a person externally marked as different, as less able.  And that's true just going to the grocery store.  At work it's even harder.

All of which leads me back around to my current problem: patients often exclaim in dismay when they see the crutch.  I'm not sure what they think happened to me, but they clearly imagine some kind of catastrophe.  I get comments about the wrist brace I wear, too, but those tend to be more casual; lots of people wear a wrist brace, for a variety of reasons.  This crutch, though... it seems to really concern people.  Some patients cry out as soon as I walk in.  Others try to contain themselves for a while.  I watch their eyes go to it when I enter the room, rather than directly to me.  Often they have to ask for my name multiple times because they weren't listening yet when I started talking.  Whichever path they take, both end at the same place: what is that?  Why do you need it?  Are you okay?  I can't help but feel that the answer is important to them somehow.

I wonder, too: if I make it too clear that I have a disability, will it affect their perception of my safety as their physician?  I know that I would never put my patients in a situation where they could not safely get the medical care they need, but do they trust that?

So what do I say about this crutch?  Through trial and error I have found the most important features my answer needs to contain.  First, it has to be an answer; pushback invariably escalates into tension.  It has to be serious, because a clever joke often just leads to more insistent questions.  It can't be too long or personal, because they are not really there to talk about me and I'm not there to lecture them about my condition.  And it needs to be straightforward, because something mysterious or evasive tends to backfire on me - on occasion, it's even caused the patient to get belligerent about demanding a proper response (as to why patients feel they are owed information on my personal life... who knows, but the exam room is not the place for me to try to figure that out).  The ideal response, then, is a kind of sound bite.  Short.  True.  Uninteresting.

For my wrist, I've settled on, "Oh, it's just a little sore today."

For the crutch, saying, "Oh, it helps me with my balance," seems to go over the best.  If they still have questions (which is rare), I simply say I have neuropathy and leave it at that.

Having a quick conversational tool is invaluable in helping everyone in the room get past my devices.  Why do those two sound bites work well?  I have no idea!  But I'm glad to have something in my back pocket to help me navigate these conversations.  Ultimately, with or without the crutch, my goal with a patient is always the same: to get them comfortable with me so we can focus on the real matter at hand.

"So tell me about what brings you to the emergency room today."

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