Really taking care of a patient means making hard choices, saying things people don’t want to hear, and letting them decide if they will engage in their own care. At the same time, it means learning different ways of listening, looking for opportunities and strategies to trust our patients, believing their stories, and seeing them as full individuals
Passion in the Medical Profession | December 6, 2018 | 5 min read
By Ekene Ojukwu, MD, Johns Hopkins Medicine
This poem came out of a two-hour encounter with my first clinic patient of intern year. She was a woman in her thirties, on disability with three children. She had been dealing with chronic leg pain for years after being the lone survivor of a car accident in her teens.
She had come to clinic with the expectation that I would be able to prescribe her some opioids for the pain, though did not start our interaction naming that expectation. What ensued was a complex dance of her trying to express the right story with the right tone to convince me that her pain was worth treating, and me trying to figure out how to hear her and offer her a pathway to healing that limited the risk that she would be found one day on the bathroom floor unresponsive.
You know, I have no idea what it is like to have real pain.
And when I say real pain, I don’t mean that mild pain is fake
But I mean that there is a certain kind of pain that takes over your entire reality
It dulls the colors of leaves
It dampens your hearing
Food doesn’t even taste like food anymore.
That kind of pain
That kind of real pain
I know that pain exists
Because I’ve experienced it in bursts,
With strong headaches that last a few days, gnawing at my sensibilities,
Transforming me from a babbling brook of compassion to a raging stream of impatience.
Or, in another case, with two days of gas pains where your insides choke the very joy out of you,
isolate you and alienate you,
make you start thinking this world would be better of without you,
Or at the very least, you would be better off without it.
But those are just bursts,
And they are made more dramatic by their intermittence.
What I can’t put my heart around is the everyday kind of pain,
The one that lives within your bones, like a termite that can’t be exterminated,
And turns you into the “difficult” label, thrown around freely in your medical record.
What is it like to not have moved all yesterday because it was one of your “bad days” when any minute twist becomes an avalanche of needles stabbing their way down your back and legs?
What is it like to live with a drum line setting up practice between your ears, with unjustifiable frequency and unknown start times, which would be nice to know so that you could at least know not be home?
And if the physical pain is hard to inhabit, how much more the emotional, the ubiquitous grief that makes your smile just a little bit more forced, your interactions a little more false, your desire to be alive a little less present?
I’ve said to many, “oh I can only imagine.”
But let’s be real,
When I try, a fog rises, and the very pain I wish to see crystallized is blurred, its sounds muffled.
I’ve attempted to picture you many times as you try to walk out of your house,
Stopped by the stab of pain, that forces you to retreat frustrated and angry.
Even the intensity of your emotion is blurred in my world.
It is only a mild irritation to me.
Maybe it is my body protecting me.
Maybe if I were to enter that space, I’m not sure I would come back again.
Maybe this is the story I tell myself so I can see the next patient with a smile.
Regardless, I watch from an insulating distance.
With my eyes, my hands and my stethoscope ready to inspect, palpate, auscultate my way through our encounters,
Layers of skin, mine and yours, separating me from your insides,
The places where the aches burrow
Like rodents digging down into your soul.
I want you to know that I feel You.
As blurred of an image as it is, it is You beneath it all,
Struggling, fighting, trying to survive, needing more than this world seems willing to give,
Hungering, thirsting for relief, for freedom.
I catch glimpses of clarity, like firecrackers exploding in the street,
Familiar looks, a story that invades my personal space.
I see You.
And You are beautiful.
Inside myself, I hide from the truth,
That I can’t always help You.
That one day you may be found crumpled like a paper ball,
Made small by our inability to heal what we cannot yet heal,
To treat what we have no tools to treat.
My helplessness is the pain I have to bear.
Not that I compare it to your own,
How can I?
Simply, it is the pain I know,
The one that is un-blurred, frank, ever-present.
It sits beside me in our clinic sessions.
It sits in the front seat of my car on my ride home.
It looks at me with longing eyes,
Your eyes. expecting, Waiting, a patient defiance.
And only now, as I’ve brought its hidden nature to light, do I realize its purpose:
To remind me of You,
To remind me never to forget You.
What I learned from her that day is that all the patients that I see are not going to like me. They are not going to like what I offer them. And as much as I may try to partner and show them that I desire a solid relationship built on trust, they may carry years of pain and experiences with the healthcare system that cannot be solved in one visit.
But that doesn’t make me any less of a good doctor. It doesn’t make me less committed to their care in the short and especially in the long term. It doesn’t mean that I stop thinking about them and hoping that they found the right person to help them along on their journey.
This encounter thrust me into the full awareness that really taking care of someone (much as I am learning with parenting) means making hard choices, saying things people don’t want to hear, and letting them make the choice of whether they would like to continue on this path with you. At the same time, it means learning different ways of listening, looking for opportunities and strategies to trust our patients, believing their stories, and seeing them as full individuals.