The sky is an ominous blanket of gray. The ground consists of uneven trails with foreboding vines threatening to trip your step. And there you are, a tired, anxious traveler, puzzled and terrified of your entry into the foreign land of illness, without even a flashlight to guide you through a black forest. This is the environment that Susan Sontag paints in her haunting classic literary analysis Illness as Metaphor. With an unwanted, but preordained destination, travelers into the kingdom of the sick are ill equipped for their journey. They are jet-lagged from the onslaught of information and appointments. They realize that the customary trials and tribulations encountered in a life of health will not adapt to this new setting. However, our perception of these travelers must be radically altered to accommodate another aspect to Sontag’s metaphor. Rarely do we venture into new lands unaccompanied and alone. With this in mind, I introduce the often forgotten caregiver, who must assume a new passport as well.
In medicine, our education and focus are primarily on our patients, the ones whose passports are heavily stamped with the visa for the kingdom of the sick. After all, they must assume the burden of disease, the innumerable changes to their life and livelihood, the anguish of unrealized dreams and an uncertain future. They carry the weight of that harshest of diagnoses, the irreversible stamp of sickness, that renders them different from other members of society. They must fall victim to the unpredictable whims of the unknown interior of their body, a structure that they claim as their own but cannot master, in addition to the inquiring minds of the public, who have deprived the sick traveler of privacy, of secrecy, of an anonymous identity.
The patients’ prognosis may be heartbreaking, their journey to the end fraught with agony. However, as is so often the case in medicine, we find that the caregivers, who define the role with selfless giving of care, of effort, of empathy, are neglected on this journey in our care. Do we not realize when a diagnosis is given in the privacy of a doctor’s office, on stiff chairs that seem to assume all the tension of the moment, that when one partner crosses that boundary between the two kingdoms, the other is forced to follow and thus requires our assistance? Caregivers’ roles expand to incorporate the new duty they must perform; their identities change to accommodate the shadow of illness that constantly follows their footsteps. Interestingly enough, even when their loved one is able to return to the kingdom of the well, the physical and emotional scars of that tumultuous time will forever be imprinted in the caregivers’ mind, just like a stamp on a passport.
How do caregivers endure this reminder of the inerasable past? While their loved ones may emerge from this journey with a heightened sense of the scarcity of time, caregivers might still be plagued with fears of returning to this dark land, possibly as a solo passenger in the future. The optimism for the future, for recovery, might be suppressed by unforgiving memories. And perhaps in a more selfish way, caregivers realize that the burden of disease that they shouldered all this time is one that most likely goes without external recognition, for the duty of caregiving subsumes personal desires and praise. There might be resentment for the silence that meets their devotion and efforts, though they themselves may understand the logic behind the silence.
How is it that when our patients sit before us in health or lie in their beds in more vulnerable times, presenting their fears and hopes to us, we sometimes forget that the ones who sit beside them also require that same reflection of compassionate listening? More so than the patients they care for, caregivers need us to draw out the experiences and emotions they suppress, as these are more submerged out of necessity that their loved one speak first, be healed first. Perhaps they lack the time, the excess resources to care for themselves; perhaps they fear that their concerns might be magnified as selfish, greedy, or time-wasting to the support staff in a hospital and to their loved one. Thus, they bury these feelings along with a simmering bitterness for their situation and for the disease itself, which has usurped them of the life they ought to be living, deserve to be living.
As we remember that Sontag’s reflections stem from her personal experience from cancer, we might charge ourselves with the reminder of our role in this journey. Perhaps because we accompany travelers to the kingdom of the sick too often, remaining on the periphery like a support team to an Ironman competitor, we unwittingly become immune to the drastic changes, the shock, and the jet lag of this journey. But just as one who first travels to Rome encounters the vast drama of history and the tragedy of a fallen empire, the experience widening the person’s eyes indelibly, we who are frequent fliers must remember the significance of the first-time journey, for both of our passengers.
Ms. Karimi is a second-year medical student, University of Connecticut School of Medicine, Farmington, Connecticut; e-mail: firstname.lastname@example.org.