demoralization (noun) | a dysphoric state encountered in both psychiatric and medical populations, characterized by the individual's sense of disempowerment and futility
I met her in clinic. A mother, bringing her baby to the pediatric ophthalmologist. He had been diagnosed with a rare genetic syndrome, one that manifested in multiple symptoms across the body: the heart, the brain, the face, the eyes. Hence this appointment. She made a half-joke about running between doctors’ offices. We half-laughed.
The ophthalmologist finished his exam. The baby was too young to test his visual acuity in detail, but the structures seemed healthy, he reassured her.
She listened to his explanation. Then she asked, “Have you seen patients like this before?”
It was a rare disease. The doctor said that he had seen a few.
“And how many of them have had… good function?”
In those few words, the ache and hope and fear trembled. Her baby cried in her arms. She looked so tired.
As the doctor explained the spectrum of disease, the reasons for hope, the unknowns, she cried silently, rocking her baby, stifling sobs.
He finished talking. She wiped the tears from her eyes, smiled weakly. “Well, off to PT.”
In hospitals and clinics, as we churn through dozens of patients with varying problems, the heartache blends together. There are thousands of ways to be sick. There is a spectrum of tragedy, from the cold that passes in a day to the devastating stroke, from cataracts to cancer. The edges of these diseases are dulled for us; we see the patient in room 808, we think to ourselves “how awful, I would hate if that was me,” and then we turn and move to the next. Rounds cannot stop for us to mourn.
But for the patients whose rooms we pass, for the family members at their side, this could be the biggest struggle of their lives. The woman whose intestines refused to accommodate more nutrition, so that every day was a battle between the distended loops on X-ray and the feeding tube. The dad who brought his child from Guyana for cancer treatment, leaving the rest of the family, spending every day alone in the hospital as his son went through scan after scan. The woman, still in scrubs from her nursing job, tears streaming down her face as inside the room, the rapid response team surrounded her father.
For the mom holding her baby, it is her struggle too. She had plans for her life, dreams for the future. Maybe seeing her child graduate college, or cheering at a soccer game, or sitting at the kitchen table teaching him to read. Now she is here, with her reality, coping with the endless doctor’s appointments and fearful hopes and secret worries. Her center of gravity has changed; her universe is this child, and his galaxy of specialists and treatments.
These are the images of my clerkship year. They are a reminder that empathy has its limits. I can empathize, extend a kind word, hold a hand—but I cannot truly know these pains. That is one of the curses of illness. We can be surrounded by family and friends, but in the end, we suffer alone.
In my psychiatry rotation, I was introduced to the concept of demoralization. It is everywhere in the hospital. One of its pillars is isolation: that an illness must be experienced alone, sometimes away from home, in a hospital bed, perhaps surrounded by the walls of stigma, or the false promises of strength. “She’s so brave,” we say, watching her fight cancer. “He’s so strong,” we say, watching him on the ventilator. Our words do not touch the illness.
Yet there is a way to combat demoralization, and in particular isolation. It is called communion: “the felt presence of a trustworthy person.” That is what I hope to be: present. Trusted. I want to remember that as I continue down this path—to be present with each patient, to take a moment and hold their suffering with them, to acknowledge the undercurrents of fear. It’s true, I cannot imagine what they are going through. But I will try.
I think of that mother sometimes. I hope she and her family are well. I hope she has found a community of caregivers, a network to soften the isolation, a kind hand reaching out through the clouds to say, you feel alone. But you are not.